Bella's Blessings

January 29, 2012: Grace...

2012-01-29T23:30:00.000-08:00

Heaveno!

"There is more grace in God than sin in us."

- preached by our interim pastor, Rev. Dale Suggs today at church.

Thank God for this.

Our interim pastor has HIT IT OUT OF THE PARK over the past two week's sermons. They have been A-MAZING. Our praise band is really gelling well and sounding better and better, and last week after church, I started crying while putting away my guitar. Now, it was certainly an intense week, but I wasn't crying because I was sad, I was crying because I was happy. Church life has done much to restore both Ang and my spirits, and we are just so happy in our new community... I just started to cry over it.

On Friday, I was rocking Julian in the rocker, and he fell asleep in my arms...

I started crying in this moment as well. I snapped a pic with my phone and posted my joy on facebook saying something like, "Out of all the hats I wear, watching him nap on my lap is the most magical. Thank you God for giving us another chance." I cannot put into words the feeling of gratitude in my heart as I looked up from gazing at Julian and saw the little framed picture of Bella on my bureau.

What an unbelievable gift we were given. Another chance.

Another chance to really enjoy a baby... having been through the terror of your first one, then the terror of EB... to change a diaper and have it be fun and not terrifying... to lift your baby up by his armpits and just let him clumsily stand on your belly and drool on you while he's smiling, all proud of his accomplishment... to pinch his feet... to SEE his feet... it is sublime.

It is also incredibly healing.

As the joy washes over my heart, it gently fills in some of the scars, and washes away some of the pain left behind. It is a gradual process, but I am committed to healing my heart.

I know when my dad died, I felt bad when I started to feel good again. I didn't want my heart to heal... I thought it would mean, "I was over him." I know that this is a common experience when losing a loved one. First, we judge ourselves for "still" feeling so bad, when it seems that the world (or at least a couple of loud-mouthed people) tells us to move on. Then, we judge ourselves a second time when we indeed start to feel good again, like we are forgetting or betraying our loved one somehow. I remember how confused I was. This time around, I forgave myself in advance for feeling bad, and for feeling good. When I couldn't do anything more than lay in the fetal position on the couch by 2pm, I forgave myself. When I said or wrote something stupid that maybe I shouldn't have because I was just one part raw, one part numb, and without any buffer, I asked forgiveness of the other(s), and of myself.

If I can have one speck of the love and acceptance for myself that God has for me, 1) it makes it quieter in my head, and 2) it allows God in... and in that precious moment that I trust and open the door to my heart, God never leaves me hangin'. The experience is always - ALWAYS - so clear. The feeling of God in my heart... well, after all the pain my heart has felt, it is the most wonderful relaxing release.

Dear God, thank you for how gently you wash and bathe my heart. You have the most tender touch imaginable, and you know just what I need and just what I can handle. You are the ultimate parent. Thank you for never abandoning me, even when I was pissed at you (I figured you could take it...).

Most importantly, God, thank you for GIFTING us with Julian. He is your grace in action every day. There is nothing we could have ever done to earn him, and just like your love, he is just a gift from you to us with no strings attached. However, we'll attach a string since we're such conditional beings... we PROMISE to never forget the gift that he is, and in the moments we do, we promise to forgive ourselves for doing so, since you already forgave us on the cross. Thank you again, for ALL of it.

God night.

January 26, 2012: Returning to Life...

2012-01-26T23:48:00.000-08:00

Heaveno!

I know that in certain cultures, a period of mourning is collectively celebrated by the community after a member of the group dies, and there are certain norms that the group follows out of respect. In our fast-paced culture here in the U.S., life goes by so fast. I returned to my crazy-committed-to-too-many-things schedule, and yet, when it came time to blog on Tuesday, I couldn't. I just couldn't.

I just didn't want anything but Tripp's posts to reside at the top of the blog for a little longer. Even still, as I write, I struggle, because I know that the rhythm of life is so context-specific, and that for many people, life is moving along at its normal rate. However, I also know for many people who fell in love with Tripp over the blogosphere, things just aren't the same without him there fighting. And last, I know a lot about how it feels for Courtney and her family in terms of time standing still... just frozen in grief.

When we finally arrived home in CA after traveling the country in the weeks after Bella died, I stood and stared at the boxes that had beaten us home. They were shipped straight from the Ronald McDonald House. What stood out was the handwriting on the address forms. I recognized it, but it was also unfamiliar. It seriously took me a minute to realize it was my sister Tracy's handwriting, who had flown in all the way from Madrid, Spain, to Minneapolis to be with us, and help us pack up.

I forgot she was there, I forgot all the boxes that were shipped... the whole thing...

... where was I when they were shipping these boxes?

laying on the bed, staring out the window, completely frozen in a daze. I remember the comfort of the warm sun, and how the screen blurred the image of the sun through the window. I remember the sun. I can say that I must have known that all the other activity was happening around me, but it was as if I had earplugs in, and the sound and impact of the rest of the world around me was muted. It's been 16 months since that happened, but I still recall it vividly, and I think about Courtney, and Anita, and Lawton, and what version of that experience they are having. I keep going, but part of me is frozen again...

In the mean time, I say good bye to patients losing their battles with cancer almost every week, and sometimes it's really hard, because they are in the ICU, and all the machines, all the sensors, all the tubes, and all the drugs are the same as when I sat there with Bella for over 3 months. Tuesday, a patient of mine had a tracheostomy that kept popping off... sent me right back to Minneapolis. Then I went from that room to a 31 year old dying of brain cancer, and the dad was relating to me his heartbreak and anger at God that he only got 31 years with his son...

only got 31 years?

Courtney got 31 months with Tripp.

We got 17 with Bella, 3 of which she was intubated, sedated, and eventually trach'd.

I don't mean to say his sadness and anger isn't absolutely VALID, I just see that number as a triumphant blessing rather than a curse, and to that point, I recognize that our 17 months was a triumphant blessing compared to so many who have lost a child in utero, been unable to have a child, lost a child after only days or weeks, or never got to bring their child home from the hospital alive. I can't begin to imagine his experience. He had a healthy son for 30 years, and then suddenly, his son starts to have problems remembering things. Then, he starts to have persistent headaches. Before you know it, his eyesight starts to go on him, and before you can blink, he is lying in a hospital bed, and a hospice coordinator is talking to the dad about "making arrangements." I can't even imagine. Bella was a patient from the moment she was born. It was all we ever knew.

Ali's My Little Ponies "at the Drive-In" she said...

Sorry I'm not my most uplifting and chipper. I know God believes in me and has me smack dab where he wants me, but the work he has cut out for me is not always easy. I just remind myself that I am his, and life works most magically for me when I operate from a place of trust, service, and humility. That helps me a lot. I don't have the capacity to see the view of life from his elevation, so I accept that I only have a slice of the picture in my view. I have to take his word for it that the rest of the picture is beautiful.

Today, one patient lay in the ICU while his father was being buried. They were in a car accident. After a super fun session of classic rock anthems, the patient fell asleep. His visitors were his best friend since childhood (50+ years) and his wife. The wife said, "We just came from his dad's funeral, and to have you here making him calm enough to sleep, it's like God sent us an angel today."

That's when God is nice enough to give you a glimpse at how you can be used in such a beautiful way when you trust, serve, and SHOW UP. God is Good.

All the time.

God night.

I used to joke whenever I put Bella in this shirt and call her "Julian"... crazy, huh?

January 21, 2012: See You Later Little Buddy... part 2

2012-01-22T00:32:00.000-08:00

Heaveno!

THANK YOU for all the wonderful comments. Holy cow, they mean so much to us. Again, I'm really sorry I haven't gotten this whole post out quicker; life is really compressed right now, having squeezed this trip into a week that was bursting at the seems from all the things not done last week due to Wings of Hope... which I still haven't even really written about! Busy doesn't even come close to describing our little HQ right now. Ang travels for work tomorrow through Tuesday, and I am scared of the late night feedings! LOL. Since Julian has been breast feeding, I have gotten a free pass on late night feeds, so here we go!

Alright. Back to Wednesday.

The funeral mass.

Like I said, and the celebrant reiterated, the church was PACKED to the gills with people, some in black, many in red, and the most beautiful voice led the congregation in song throughout the mass. Courtney asked Patrice and I to sit with her family which was truly an honor. There were scripture verses, and a gospel reading, and a traditional sermon, but after communion, a certain Father Mark came up to the lectern to say a few words. I was introduced to this most caring man before the mass, and I really felt his presence. Ever been introduced to someone, and they don't really give off any energy your way, like they don't really care to be introduced? Contrast that with the time(s) you've been introduced to someone and they immediately give their attention, energy, and listening to you... that's what it was like meeting Fr. Mark.

So, as the mass went on, I watched Fr. Mark, one of the four priests on the the altar. He was so deep in prayer throughout, and so passionate in his faith. It moved me. He LOVES his faith, and he LOVES celebrating the mass... you can tell... AND he wasn't even the lead celebrant. It just exuded from him in an honest, authentic way.

It was passion.

It was beautiful.

It was inspiring.

That's all before he even spoke.

Then, he spoke.

While the lead celebrant had a very reserved, measured tone and pace to his speaking, Fr. Mark LET IT RIP.

"MY BROTHERS AND SISTERS..." he began at a pace and volume twice as fast and loud.

He began to tell us about Moses, St. Paul, Mother Theresa, and others who were true disciples and the numbers of people they touched. Then he spoke of Tripp in the same way. As a true disciple of Christ who just the other day had 175,000 HITS on Courtney's blog. NO joke. When was the last time you hear a priest or minister quote hits on a blog from the pulpit? It was awesome! He made the very convincing case that Tripp has touched more people and brought more people into God's witness than any of the predecessors he mentioned... Tripp was in some impressive company!

The way he spoke made me proud of my Catholic heritage. I grew up a devout Catholic, Jesuit educated, and while now I am a member of the progressive Christian Church - Disciples of Christ denomination, witnessing that passion for sharing the good news of Jesus Christ made me feel good.

Folks, this IS the transformative context to this entire journey. The role God and his son Jesus have played in Ang's and my life, Courtney's life, Patrice's life... THAT is where we draw our strength from...

... and even still, we are often weak. Often anxious. Trying to do it our way, not His way.

But that's okay, too.

After Fr. Mark sat down, Courtney rose and headed to the pulpit.

The anticipation was palpable. The tears began before she even made it onto the altar. The tissues made noise throughout the congregation.

With a soft, often breaking voice, she spoke. She shared from her heart, like she always does, and was as vulnerable and transparent as she always is. She spoke to the audience, she spoke to Tripp, she cried her way through it, but stood strong (after standing strong for 2.5 hours receiving guests) through it all. To say there wasn't a dry eye in the church is an understatement. I was sitting in the center of the church, and I could physically feel the energy people were pouring out to her from all points in the church, to hold her up, to somehow soften the pain, to somehow give back what she had given them for so long through her blog and the tremendous example of unconditional love she was these past two years and 8 months. It was beautiful. It was sad. It was heart wrenching. It was divine. I imagined God looking down with such a smile at his people, gathered so close together, worshiping so intensely side by side, loving like they had rarely loved before... and this was just what was happening in the church.

Then, when the mass ended, and we headed to the cemetery, the ripples of that love were seen by the roadside as people lined up to pay their respects, Elmos, signs, and flowers in hand. It was just about the most beautiful thing I have ever seen... the whole day from start to finish.

Bella taught me about my Providence goggles so long ago. Do you remember those? When she was first born, I started seeing God in every situation we were facing. He was right there with us. I started blogging about it, calling it the Providence Story of the Day. Three months later, an entire book had been written. It was with these same goggles that I viewed this entire day from the moment I waited in line at the valet at my hotel to the moment my friend Maria stayed on the phone with me till 1:30 am our time while I drove the hour and 15 minute drive home from the airport. God was there through it all.

Through It All by Andrae Crouch

I've Had Many Tears And Sorrows,
I've Had Questions For Tomorrow,
There's Been Times I Didn't Know Right From Wrong.
But In Every Situation,
God Gave Me Blessed Consolation,
That My Trials Come To Only Make Me Strong.

Through It All,
Through It All,
I've Learned To Trust In Jesus,
I've Learned To Trust In God.

Through It All,
Through It All,
I've Learned To Depend Upon His Word.

I've Been To Lots Of Places,
I've Seen A Lot Of Faces,
There's Been Times I Felt So All Alone.
But In My Lonely Hours,
Yes, Those Precious Lonely Hours,
Jesus Lets Me Know That I Was His Own

Through It All,
Through It All,
I've Learned To Trust In Jesus,
I've Learned To Trust In God.

Through It All,
Through It All,
I've Learned To Depend Upon His Word.

I Thank God For The Mountains,
And I Thank Him For The Valleys,
I Thank Him For The Storms He Brought Me Through.
For If I'd Never Had A Problem,
I Wouldn't Know That HE Could Solve Them,
I'd Never Know What Faith In God Could Do
Through It All,
Through It All,
I've Learned To Trust In Jesus,
I've Learned To Trust In God.

Through It All,
Through It All,
I've Learned To Depend Upon His Word.
I've Learned To Depend Upon His Word.

After the interment ceremony, we headed to the Knights of Columbus Hall for some good southern eatin'! I hadn't eaten breakfast that morning... just didn't feel like eating, so I had worked up quite an appetite by the time we good to the KofC (NOT KFC, mind you...) at about 3:30 that afternoon. Well, as I stood in front of the jambalaya, Lawton, Courtney's dad asked me, "You know what that is, Tim?" I did, but the kicker was the white beans with meat in the tub next to it... "You gotta drizzle them white beans over that jamabalya..." sounded good to me! So much so that I went in for seconds! Patrice and I sat with Courtney and her absolute God-send of a boyfriend, Steven and we all broke bread... and King Cake (oh MAN was THAT good) together. I could tell Courtney was exhausted by this point, but she was gracious throughout.

As the crowd began to thin, it was time for me to make my trek back...

across the lakes...

to the airport...

and back to two sleeping kids that needed to be up in the morning for school and daycare... back to it... this unending journey of faith.

God night.

January 19, 2012: See You Later Little Buddy... part 1

2012-01-20T06:26:00.000-08:00

Heaveno!

It's 9pm PST on Thursday night, and I am holding the last vapors of gas together to write this post, and then, I shall CRASH. 4 hours of sleep this morning after a day like no other, then, boom, get this kids off to school and child care, get to work... you know, back to it. I apologize in advance if this meanders. I wish I had more energy to compose this post 'better,' because I want to do the day (yesterday) justice. Again, I'll do my best here, but please bear with me.

Unfortunately or fortunately, I've been to a lot of funerals in my time, and many - many - of them were when I was much younger, so the tenor of the day was not new to me, except in one MAJOR way.

We had Bella cremated, and in doing so, brought her with us in an urn to the memorials and back home to CA.

Yesterday, I saw the toughest image I've faced yet at any funeral... that small, tiny little coffin.

Ugh. No lie, that image will forever be burned in my mind and heart. So. Small.

Okay, let me do my best to take you through the setting and flow of events to 'get you there' as best I can.

The visitation and funeral mass were at this big, beautiful, airy, Catholic church in Courtney's town of Ponchatoula, LA. I knew visitation began at 10, so I made it a point to get up there right at 10, so I could spend as much of my day supporting Courtney and her family as I could. I also just wasn't sure how much bigger this whole thing was than what I can grasp from out here in California. Sure enough, the entire parking lot was already full at 10.

A beautiful, open air vestibule/narthex/foyer greeted visitors through the main doors, and within this space, framed collages and various photos of Tripp hung on easels and tables. Once inside the sanctuary, a slide show ran to the left, and down at the bottom of the main aisle, Courtney stood by herself, with her mom, Tripp's dad, and his mom standing to the right of the tiny casket.

I was immediately greeted by Courntey's aunt Linda, who couldn't have been sweeter. We met her when we passed through town after Bella died. I got in line, an paid my respects to Courtney, her mom, Randy, his mom, and Tripp. I saw Sam, Chloe and Marybeth Sheridan as well, Sam was one of the first 7 kids to go through BMT. They live in Tennessee now and drove down.

(sorry, it is now 6 am on Friday, I feel asleep at the computer last night typing this. I'm really sorry for the delay - I know you wanted to hear how the day was, but this is gonna get abbreviated a little)

I also got to meet the amazing Delgados, Vanessa and her husband Jason. They are simply a bundle of joy and love.

I also got to reconnect with Patrice Williams, which just felt extra special. That was wonderful. I love and admire and am inspired deeply by Patrice, so to spend time together, eat together, and worship together was a privilege in and of itself.

I finally got to meet and spend time with the amazing crusader Christie Zink as well. Christie is a woman on a mission to cure EB, and it was great to finally share hug.

In addition, I (like Patrice and Courtney) had so many people come up and introduce themselves and say, "You don't know me but I feel like I know you..." Our blogs have introduced so many to EB, and people took the time to say thanks for the difference that writing and sharing has made. That was really sweet. I just felt so proud to be Bella's daddy. We started this thing right after she was born to get out information on how she was doing efficiently, but it quickly shifted from just information to inspiration... and it was and still is a two-way street. Thanks for still being here. It inspires us to keep fighting for a cure.

From 10 am till about 12:30 or so, the visitation line stretched from the altar all the way out to the vestibule. I saw entire sports teams in their high school jackets there... they closed the Catholic school on the property for the day because the church knew how big a celebration of Tripp's life this was going to be.

When it came time for the funeral mass, I would guess that there were 700 people in the church easily.

There is so much more to share, and I have to get in the shower and get the kids up... the day is upon us. I will continue from here.

God day.

January 17, 2012: Into Nawlins again...

2012-01-17T23:32:00.000-08:00

Heaveno!

Well, with a heavy heart, I made the voyage to Lousiana for Tripp's funeral tomorrow. Two cool things to share about the journey:

1. I walked up to the Budget rental car counter with a fierce headache. The agent, Sharon, couldn't have been nicer. She began some polite small talk as she was processing my car. After asking if I'm here on business, I share I'm here for Tripp's funeral.

"Is that the boy with the skin condition that I've seen all over facebook?" She asked.

"Yep. That's him." I replied.

"Oh no! I didn't know he passed!" She frowned.

We continue to talk and share and after a while, I give her ours and Tripp's blog addresses. She shares how she wants to contribute to causes, and to volunteer in the NICU holding and rocking babies. I witnessed this amazing ministry when Bella was in the NICU. So, I got her to promise to call the volunteer office by the end of the month to begin. She lit up, and said, "That's it! All I needed was a deadline!"

We had the most tender conversation between a rental car agent and a weary traveler. God is present, even at the rental counter.

2. When looking at where to stay tonight, it was no more expensive to stay in the French Quarter than to stay at a vanilla, cookie-cutter hotel airport. So, I had a thought. I'm gonna stay in a historic building and go to Preservation Hall to listen to my dad's favorite jazz band, The Preservation Hall Jazz Band. So, I found a great old hotel two blocks from Preservation Hall for a whopping $62 a night. Because my flight got in late, I only had 30 minutes till their set ended, so I headed straight to the Hall. It was unlike anywhere I've ever been. It was literally a time warp. My dad was 44 when he had me in 1972, and when I was little, cassette tapes of New Orleans ragtime jazz lined the glove compartment of my dad's 1980 Buick Century. He played piano by ear, and loved playing stride and ragtime by ear, and man, he could tear it up. But, like so much of my dad, he kept his love for and playing of jazz private, reserving the moments of his playing and listening to when no one, or maybe just one person might be around.

When my dad was dying of cancer, he told me he wanted to have "Weary Blues," by The Preservation Hall Jazz Band played at his funeral. Well, that's an UPBEAT New Orleans jazz tune, and I chickened out and didn't request it.

Tonight, I did.

The Jazz club is tiny, no microphones, cushions on the floor for the first two rows, benches for the next two rows, and the back of the room is just the floor. It is incredibly intimate. Well, time was running out on their set, and I came to the side door and asked them if I could make a request.

"A music request?" the trumpeter asked.

There I was, the whole room and the band looking at me in total silence (no joke), waiting for an answer.

"Could you play Weary Blues for my dad up in heaven?"

Truth be told, I didn't even know how the song went, but I knew it was my dad's favorite, and it's something I've never really talked about with anyone before, so I was nervous even just saying the song name.

They could tell I was really nervous, and so they said, "Weary Blues? Weary Blues, yeah, we can do that one." Then the trombone player shook my hand with a twinkle in his eye and said, "Alright, alright!" in the most laid back, creole/nawlins way with a smile, as if to say, "Good work, kid." (At least 4 of the 6 in the band must be twice my age)

And so they did.

And as the familiar thumping style that I so vividly remember from my childhood filled the room, as the tears filled my eyes, a smile filled my face, and joy filled my heart.

There I was, in New Orleans, in Preservation Hall, and THE band itself was playing my dad's favorite tune FOR HIM.

I kinda feel like I made up for his funeral in a way tonight.

:-)

Tomorrow is Tripp's funeral: a joyous celebration of a life that changed lives, and will continue to change lives all over this planet. I realized that I was coming to mourn his passing and loss, but really, I think I'm here to celebrate his life. Pain and joy can co-habitate my heart. They've done it a thousand times before over these past almost 3 years. They'll do it again tomorrow.

Also, our friend Patrice Williams, Jonah's mommy, is flying in tomorrow from North Carolina with not a lot of time to spare. It is a trip of many firsts for her, and she is understandably nervous about leaving Jonah and Matt and handling all the travel logistics on her own, since Matt is usually in charge of that duty for the family. Will you say a prayer for her safe and timely arrival? She humbly requested this on her blog, and so please send her some love and comfort, will you?

Lastly, please pray for our friend Courtney. Tomorrow is going to be many things, and A LOT of people are naturally going to show up to share their love and support. I remember Bella's memorial in CA as a blur. It was wonderful to see so many people take time out of their busy lives to be there, but it was also stressful to try to be present and connect with everyone who came out. It still feels a bit like a dream. Please send Courtney strength so she has the physical and mental energy to be with so many people after being in her home with Tripp for so long. Please send her comfort as she has to say goodbye to his earthly body for the last time, and send her love to will help replenish all the love she has poured out of her heart for that amazing little boy.

Thank you,

God night.

January 15, 2012: R.I.P. Little Drummer Boy...

2012-01-15T22:27:00.000-08:00

Heaveno,

On a Saturday morning
just like the days past
Tripp woke up to mommy
and this time he asked

Is this the day, Jesus?
Am I to come home?
and today something different.
Jesus came for his own.

While laying with mommy
Jesus reached out his hand
and led Tripp back home
to that heavenly land.

As he approached the big gate
a little girl stood there waiting
with steely blue eyes
there was no mistaking

that an angel named Bella
was ready to play,
to laugh, sing, and shout
and celebrate this day

for her wonder-twin partner
had come home from 'hell'
having inspired the world
like she had herself

well done, lad and lass,
You connected the world
in ways known and unknown,
without ever saying a word.

Your sheer presence was all
A tsunami of hope
a restoration of faith
a model of strength

So many of us are better
at this game of life now
because you came into it
and showed us just how.

You two and God
in divine partnership
have accomplished so much
without making a pip,

and a small handful of folks
parents and grandparents, too
laid it all out
on the line here for you.

Did you pick us?
How did you know?
Was it laid out in advance?
Is this all God's big show?

Of course we'll never know
While still here on earth
Was it all meant to be?
Or did we just rise up and see

That God's promise is true
no matter how tough
He is always here
in the easy and rough

If we just remember to look
His signature lays
all over this planet
in millions of ways

In me and in you
even when we are blue
we are not alone
He's here through and through

So despite all the pain
that we feel in our heart
we know that there's joy
if we do our part

which is give thanks for what is
and remember the cost
for all that we have
will one day be lost

and we'll stand there with you
holding your hands
starting all over
in that heavenly land

where we'll run and we'll play
and we'll hug and we'll kiss
and there's not adventure
that you'll have to miss

because you are now free
of this thing called EB
that God did provide
as a lesson to see

us give past our limit
and dig deep inside
to discover God's power
that never will hide

if we just ask for it
to show its true face
we see God in all of it
and feel his sweet grace

the moment we trust
and give in to him
he rewards us with peace
serenity within

it's all one big game
for all of us to win
if we just remember
to always thank him

it's all simply perfect.
it's all simply perfect.
We may lack the ability to see,
but we have the ability to believe

and this is our faith
the gift that we give
it allows us to trust
and continue to live

even though you are gone
and we'll miss you dearly
we'll see you again
and it will seem nearly

a blink of an eye
a snap of the finger
no pain will be present
no suffering will linger

for we'll be together
in God's heaven above
surrounded by angels
surrounded by love.

God night.

January 12, 2012: Results from Wings of Hope... postponed

2012-01-12T23:45:00.000-08:00

Heaveno!

Wings of Hope was awesome. Sold out. We exceeded our fundraising goal. We got lots of great comments on how well it was put together. I had the opportunity of picking up and dropping off Dr. Wagner at the airport, and to get two hours of one - to - time with him was amazing. What he shared in his presentation was mind blowing...

.. and yet, I just told Ang that I really just don't feel right sharing all the details right now after reading our dear friend Courtney Roth's update just a little while ago.

So, for now, if you want to see some beautiful pictures, CLICK HERE and view our friend and Team Bella member Sara Cooper's pictures from the day on Facebook....

... but really, what I request you do is go over to Courtney's blog, read her update, leave her a comment of support, and say a prayer for her and Tripp. They could really use it. CLICK HERE to visit her now.

Thank you.

God night.

January 8, 2012: Home Stretch...

2012-01-08T21:46:00.000-08:00

Heaveno!

Well, again, my apologies for not writing on my Sun/Tue/Thur schedule. We are CRANKING over here in Wings Of Hope Central HQ. Things are going good for the luncheon. We are just about sold out for the luncheon... we have 2 open seats left and about 3 people who have said they're coming but haven't registered yet.

To even be able to say - given that we had just over 4 months to plan this thing, with a website re-launch, an EB Awareness Campaign, and the Holidays in between - that we have 5 seats left is AMAZING. Overall, Ang and I are just so pleased - like pleased beyond our expectation - as to how well PUCK is doing right now. We are just so grateful for allllllll the people who are reaching out and supporting this organization. Life is good, and the world is FULL of really, really good people (It's full of some not-so-good people to, but I just focus on the good ones and being a good one, and that seems to magnify and multiple goodness around me).

Wow, there are so many details to manage! Tomorrow, I will be sitting down with a fellow church member to iron out the A/V situation. I have really been suffering over this. I really should have hired an A/V company to do the sound, video, and slide show, but I didn't. It's one of those things that is glamour-less. People expect it to work, and when it doesn't, people frown. Ang and I also are around organizations that put a lot of time and resources into pro A/V at their events, so we might have an artificially inflated expectation bar, but we really want to make a good impression since roughly 60% of the attendees coming have never met us, our organization, or heard our story.

This morning at church, I snuck up into the choir loft while they were setting up today's A/V to see how they did it. I know there is a way to control things on your own monitor without people seeing what you are doing on the projection screen, I just don't know how to do it. So, I started picking the brain of the guy, Dean, who was at the computer, and he showed me some things I didn't even know my mac could do! Then we had to split up, and just before church began, I heard 'that voice.' You know, my 'Providence Voice.' I've written about it before. It's that still small whisper that comes from deep within my heart.

It said, "Do it."

I knew exactly what it meant.

I walked up to Dean, and summoning my courage said, "Alright, I'm just gonna ask ya. What are you doing Wednesday? We are having a luncheon to raise money for a cure for the disease that took our daughter last year, and I could really use help on the A/V."

"Can I be out of there by 1pm?" was his reply.

"Yes!" I said.

"Sure. No problem."

At which point I started to cry. No joke. This has been weighing so heavily on me that it was like all that weight just went away. He saw that I was crying, and said, "Aw man, it's okay! Wow, happy I can help!" It was such a cool moment.

Then, I walked up, joined our "Nitty Gritty Church Band," and we hopped through "the Nitty Gritty Dirt Band's" version of "We Three Kings." Man, THAT was a HOOT! Great day at church!

P.S. We'll get back to more weekly episodes of Ali's Art World after the luncheon ends and we figure out what we're actually doing with her site. We shot one more episode, it just needs to be edited. Keep you posted!

God night.

January 3, 2012: Happy New Year!

2012-01-03T23:23:00.000-08:00

Heaveno!

Happy New Year!

Joyfully, prayerfully, encouragingly, happily, excitedly, honestly, and hopeFULLy, I wish you a Happy New Year.

I for one am unbelievably excited about what 2012 holds on so many fronts!

In our home, Ang and I are focusing on saving for a house with four walls of our own, and this is the year I pay off my student loan! We just made our last car payment on our minivan, and now... no more car payments! YAY! We also have a big reunion with my family in Hilton Head, SC this summer, and we will have more little and big cousins running around... my two sisters and brother and I have never had all our kids together in one place, and this will be the first time!

On the physical/health front, Angelique and I just started a 3-month Body For Life Cycle. We have done "BFL" as we call it a few times, and it has been so effective. IF you don't have a copy of Bill Phillips' book, Body For Life, we both highly recommend it. The program is easy to follow, and Bill infuses some great psychology into his plan to help ensure you work the program, even (and especially) if you don't or can't follow it 'perfectly.' Ang and I both ran today for the first time in 6 months for me and a year and a half for her! Oh, we're gonna feel it this week, and not in a good way! That's alright. For us, the confidence, energy, and self esteem that come from working out and staying fit are worth whatever aches we encounter. There is a great quote my buddy Joe Polish has plastered on the door of his fridge:

Nothing Tastes as Good as Looking Good Feels.

On the work front, I am gearing up to really market my new courses I've created, "Start Out Successful: Level I and Level II" to my music therapy community nationwide. We get absolutely no training in the business development side of career building in our degrees, so while music therapists may be talented once in front of a client or patient, if they don't know how to effectively, efficiently, AND PROFITABLY put themselves there in the first place, what good are those skills? I paid A LOT of money for my degree, and it did very little to teach me how to make the money back! LOL. College is funny; they expect you to invest more than any other amount of money except for a home without any roadmap for how to make back your investment and exceed it. The national student loan debt now exceeds the national credit card debt as of this year. So, seeing this in my industry, I figured I might as well teach the success and business principles other industries use to get up, running, and profitable to my own peeps so our field can actually experience some growth!

On the PUCK front, our luncheon, Wings of Hope, is next Wednesday, and we are pretty close to selling out! In fact, by this time tomorrow, we very well might be. That is really exciting because we were only given 4 months to plan this; it's right after the holidays, and we had other major projects in the works when we were gifted this amazing luncheon! Plus, it's our first time at the rodeo planning a fundraising luncheon. We couldn't have done it without the mentorship of our parent organization, Children's Cancer Research Fund. Without their support, there is NO WAY we could have gotten so organized and so successful so fast. Thank you to John Hallberg, Karen Skewes, Jenny Phyle, Kris Huson, Ryan Durry, and anyone else at CCRF we may have missed. Plus a HUGE thank you goes out to Dr. John Wagner, who is getting on a plane in MN before dawn, flying to CA to speak for 15 minutes, then flying home by midnight that same day. Awesome. Just awesome.

Big thanks in advance also goes out to our local committee and our table hosts. Again, without them, this event would not look the way it does AT ALL. It takes a village to move a cause forward, and a village has really stepped up here in Orange County to support us, and we thank you from the entirety of our hearts!

Ali is going to start piano lessons this winter, and Julian is just about ready for infant karate. Just kidding (about Julian).

Folks, life is GOOD. I am blessed to work a job where I get to see people in much rougher places than I am all day long. Granted, we were in a pretty rough place from about May 27, 2009 to October 11, 2010, but we're not there now. It is important to honor the past, but it is equally important to honor the present! We have been GIFTED this beautiful 4 month old boy Julian, a big sister whose favorite roll in life is just that... and a marriage we were smart enough to consciously create... and continue to create... together from day one. It is our job to RECOGNIZE and be grateful for THIS moment.

There are blessings in EVERY moment. It's just that sometimes they're easy to see, and sometimes they're easy NOT to see. That's the game. Find the blessing in every scene. Life's like one big word search. The blessings are sitting right there in plain sight, though sometimes they might look backwards. Sometimes you might be looking across for them, when they are sitting right in front of you... going up and down. THAT'S what makes the game interesting, and even fun, IF you are willing to play along.

Let's play in 2012!

Now, enjoy a photo collage of Ali's and my Friday morning "Squinky Fair and Concert Festival," as well as pics from D-Land...

God night.

December 29, 2011: Tales From Multiple Fronts!

2011-12-29T23:42:00.000-08:00

Heaveno!

Well, it's the last post of 2011. Does that mean something? I dunno. I do know a couple of things. We were busy beavers in 2011. Even more so, we were BLESSED beavers in 2011. God is good. All the time. He has been so good to us this year. We work hard and play hard and God has given us so much to be joyful for along the way. HE has given us YOU! In this ADD over-stimulated world of technology and information, we're all still together... convening a couple times a week to share... life.

Fellowship... internet style! I almost said virtual style, but it's not virtual, it's actual!

Life on the PUCK front is hectic right now. Our inaugural charity luncheon in Orange County, CA is less than 2 weeks away! SO many moving parts to coordinate. IF you are reading this and you are planning on coming but have not registered online (click on Wings of Hope in the side bar)...

... PLEASE do so this weekend! Next week we have to send in a final head count and let's just say we're not where we hoped to be at this point with registrations. We've had twice the number of RSVPs, but we need those RSVPs to convert into registrations so we can have an accurate food count for the restaurant.

There are still seats available if you are local and would like to come. Dr. Wagner is flying in just to speak at our event and then get on a plane and go back to MN that same day. How cool is that of him?

And, if he is in town, 2011 CNN Top 10 Hero Chef Bruno Serato will be dropping by to say hi to us!
Should be inspirational and yummy! 5 star, 3 course lunch to boot! Alright, alright... enough plugging.

On the music therapy front, I said goodbye for the last time to 3 of my patients today.

That's a tough day at the office. I'm glad I am only working 2 days a week. The first patient was intubated and sedated and on the same meds Bella was on... Fentanyl and Midazolam. They were taking her off life support today. She is 45. My second patient I used to see in the infusion center. She is going home to hospice. She is 50. Cancer does not care how old you are. It's got me a little freaked out frankly, because there is A LOT of history of morbidity due to cancer in my immediate family tree. Grandpa, dad, aunt, and uncle.

A really sweet moment occurred when I walked out of the first patient's room in the midst of a flashback after seeing the medicines and ET tube. The social worker on that unit just happened to be walking by as I was walking out. I told her what was going on. She didn't know Bella was in the PICU for 3 months. She just gave me a hug and basically said she couldn't believe how I could even walk into a hospital again much less do what I do with the Palliative Care Team. I just feel like it is where God is calling me to be. He has been molding me into this position for years. Still, it is no easy walk, but it is where God wants me. THAT I can tell.

On the home front, we had a Team Bella planning meeting last night, and Sara was tickling Julian better than I ever have. Enjoy the video!

God night.

December 27, 2011: Catching Up...

2011-12-27T23:05:00.000-08:00

Heaveno!

Sorry, I've been slacking on blog duty. Thursday, I had writer's block, and Sunday, I was exhausted from a wonderful Christmas Day. So, here is a photo essay of it all...

God night.

P.S. Blogger says I've reached my quota with pictures on this post, so I'll hook you up with another shot of Bella next time...

December 20, 2011: Tuesday's Tales from The Front...

2011-12-20T23:33:00.000-08:00

Heaveno!

I'm liking this idea of sharing a little of the beauty and magic that I get to be a part of each day in my hospital work, because for so many, music therapy is such a new shape on the peg board. There is an entire team of caregivers at the hospital that create such moments with their patients, and it is an honor to be part of their team.

Today, I walked into "E's" room. It is one of the few "semi-private" rooms in the hospital. That means there are two patients in one room, and my patient was in bed #2. Bed #1 was occupied by a large gentleman who struggling to breathe. He was laboring with his breath and clearly not at ease. The bad news? I wasn't there to treat him. The good news? I'd end up treating him anyway, since the music I was about to share with his roommate would inevitably be shared with him as well!

As I introduced myself to E, his wife burst out, "TIM! You spoke at the Cancer Patient Dinner last year! We LOVED your speech! Wow, you're here to treat my E?"

This was a good start! :-) If we could all be introduced with such fanfare! I went to get my guitar and songbooks from the hall since I knew we'd be gettin' some music on in here.

I could detect that E was having trouble with his speech. His cancer had metastasized to his brain, and it seemed to be affecting his expressive language center. However, his receptive language seemed fully intact. E's wife opted to climb into bed with him and snuggle, giving me the chair. It was so cute, I asked her for her phone so I could snap a picture of them together.

They are a couple of great faith, and had a boombox in the room which they regularly played praise and worship music on, so when it came time for A) church Christmas carols or B) pop Christmas Carols, they went for A! The nice thing about carols is there are kids pop carols, adult pop carols, church carols, fast carols, slow carols, funny carols, contemplative carols... something for (almost?) everyone.

As I played, the tears began to f-l-o-w out of E and his wife. They were good tears, tears of joy for having such beauty (the music) present in live form in their room at this moment of their long journey. There were also tears of sadness. This was most likely E's final Christmas; he was going home on hospice later today. I sang "Oh Holy Night," "Silent Night" and "Little Drummer Boy," and after the third song, I just blurted out something resembling the following...

You know, the nice thing about music? you don't need words to express your feelings while listening. I have a 4 month old at home. He doesn't have language or words, but man, can he communicate! When he is happy, the world knows he is happy... no words needed. He simply radiates and beams happiness from his whole being. I can use words with him, but they are just "mwah mwah mwah" to him. He doesn't need words from me, either. We communicate just fine.

To which E's wife looks up at E, reaches up and caresses his cheek and says glowing with love, "You hear that E? That was meant for you!"

E was obviously a strong man in his life; you can see it in his eyes, face, and body. It dawned on me that E was NOT OKAY with not having words... right up until this moment. Again, the tears just flowed. His face relaxed and smiled, his shoulders rested back just a little further into his bed, as if for just that second, all that was wrong with his (in)ability to speak was right again.

My whole day was worth that moment.

That is what I strive for with each day here on this planet.

You know who else never needed words to communicate with the world?

Bella.

No words necessary.

She captured the world with her eyes, and thanks to digital photography, she still captures those who meet her for the first time through "film." My God, am I grateful for my little Canon PowerShot SD1100 IS. It is beat to you-know-what, but it has captured our angel forever in its lens.

Final unrelated note...

www.alisartworld.com is officially live, with her second Episode! Please go check it out! Ali is having a lot of fun with this, as am I, except for the fact that editing video is a ________ eh hem... joy!

God night.

December 18, 2011: Fun Time...

2011-12-18T22:14:00.000-08:00

Heaveno!

Sorry to skip a day on you (again), it's becoming kind of a habit. What can I say? Busy house. This past week alone...

1. Our local Team Bella labeled, stuffed and sent out over 250 invites to our January luncheon.
2. I launched a registration website for my professional association's regional conference
3. I made and sent out a postcard to about 800 music therapists for our spring conference
4. I oversaw the making of a 17 page preliminary program for conference
5. I wrote and delivered Module 5 of my second information product
6. We attended Ang's company "winter open house"
7. Ali had her first school musical production
8. We stuffed, stamped and sent out announcement and Christmas cards to our list of 50
9. Ang returned to work
10. Julian began part time day care 3 days a week
11. I began a six month partial sabbatical to stay home with Julian on Mondays and Fridays.
12. Julian had his 4 month well baby check-up
13. Ali saw the doctor for "issues with number 2"
14. Ali sold her first piece of art from Sunday's video lesson!

Holy crow, what a week!

I am a bit more relaxed now that the week is behind us. I knew all this stuff was falling on the same week, and there really wasn't anything we could do about it, it was just a case of bad timing. One thing I am good at is making sure I don't double book my time for events, but the lesson I learned this week was that I need to map out projects in time and make sure not to double book project deadlines. I did this to myself last year at New Year's, and so I tried to outsmart myself by setting earlier deadlines for our conference, but then we landed this dream luncheon from Bruno Serato, and well, there went that.

I remember on Wednesday, about mid-morning, Ang called me from her office and asked me how I was doing...

"Grinding away," was my reply.

"I can't even consider myself grinding!" she said in return.

This week was a grind, no lie, but if feels good to stand on the other side of it at last and have all that past us. The best part of it all?

We actually had a lot of fun throughout the week.

Ali and Daddy pretending to be Mary and Joseph in the Nativity Scene...

It reminded me that circumstances don't require any specific response from us. We can generate any response we choose. That's a great insight to draw upon when I find myself grinding away on multiple items. I really do have the freedom to feel and act however I want about the whole thing. This week, I really worked on just handling what was directly in front of me, and nothing else. It required some discipline, and I was bummed at one point because I had to call a dear friend and apologize for not getting any work done on a mutual project, there just wasn't any extra time this week. However, I wasn't bitter or resentful at my schedule for putting me in that situation. It's my schedule, not anyone else's, so it seems not too smart to get mad at myself or resent myself. That hasn't always been the case, but life is one non-stop learning opportunity, and I am working on learning as much as I can!

We had fun at church today, despite Ali's 4 hour rehearsal for the Christmas Eve musical.
We had fun at the mall on Saturday picking up some more Christmas gifts
We had fun at Ali's school musical
We had fun at mommy's company party
We had fun stuffing ourselves as well as our envelopes with Team Bella
We had fun giving Julian his first rice cereal this week, too!

We can find fun inside of busy, and THAT is a blessing.

God night.

December 13, 2011: Tales from the Front...

2011-12-14T00:24:00.000-08:00

Heaveno!

Two weeks ago, I shared a story about a profound day at work in the hospital for me. Well, I had another one today, and I need to share again how beautifully God orchestrates life.

My first meeting with "E" was one I'll never forget. A young man, only a few years older than me, and younger than all my siblings, I found E in an infusion room writhing in pain from pain in his chest. It got so bad that he actually was on his hands and knees in the hospital bed, desperately trying to find relief from the pain. I played my guitar for him, and felt completely helpless. After 30 minutes, nothing changed. His pain was 10 out of 10 still. He even had the grace to say, "I'm sorry, I just can't concentrate on the music, the pain is just too distracting."

I left his room feeling not so much like a failure that day as just ineffective. On so many occasions, I witnessed wholesale changes in a patient's body from the addition of live music in their space. We all know music affects our mood, but I really work with patients to understand how music affects the body. Well, not on this day.

That was a couple of months ago.

In and out of the hospital and the infusion center, I would bump into E, and he was always quiet, polite, shy, even. We never really connected or hit it off musically, but there was a polite awareness and mutual respect present.

Fast forward to last Tuesday, and E's condition has deteriorated. He is now intubated and sedated in the ICU. I look at his IV pole, and see the familiar names that kept Bella sedated in the same setting just over a year prior. Every IV pole I see with "Midazolam" on it reminds me of Bella. I meet his mom for the first time. She is a strong-willed, confident woman, and we talk for quite a while. I explain that even though her son is sedated, his ears are still processing auditory signals, and I tell her that I first met her son in the infusion center 'on that fateful day.'

She then proceeds to tell me how her son told her how some man came into his room while he was in that most excruciating pain and played his guitar for him. She was very kind to say this; I thought I had been wholly ineffective that day, but at least he remarked at the experience even if it didn't take away his physical pain.

Turns out E loved the beach, and was able to take one last outing down to Newport Beach to hear the waves and grab his favorite, "Perry's Pizza" just before being hospitalized this time around. So, I grab my trusty ocean drum, hand it to mom, and ask her which instrument E would prefer hearing over the waves: guitar, ukulele, or native american flute. She says guitar, so I grab my guitar and improvise a meditative, arpeggiated rhythm while she created the waves with her drum. The tears flowed down her cheeks as she balanced the drum on her lap with one hand, and held her son's hand with the other. It was a beautiful sight.

Thursday, I return, and E is a little less sedated, can make eye contact, and nod appropriately to commands or questions. E nods that he remembers me, and that he remembers "the jam" mom and I did on Tuesday, so mom and I do it again. Again, the tears flow. Tears of pain, tears of anguish, tears of release, of catharsis, of joy, of reminiscence... all of it. I affirm the goodness of those tears. You could just see the stress flowing out of her.

Today in rounds, I find out that E has taken a final turn for the worst, and that a family meeting will be held later in the day to determine the next course of action. The Palliative Care Team agree that I should go and see mom and E after the meeting. Before I go in, I see my colleague, the amazing Dr. Liao, and he informs me that mom is going to take E off the ventilator tonight and let him go. The team will keep him sedated and comfortable, and he will peacefully join those before him in Jesus' arms in heaven. That decision had just been made.

I gown up and enter the room only to hear a nurse trying to tell mom to stay strong.

"I'm feeling anything but strong right now," was mom's reply.

I walk in without saying a word, smile, and walk toward her. She recognizes me after a second or two, and simply walks up to me, and in a tear soaked hug, collapses in my arms.

No. words. Necessary.

After a second, I affirm and acknowledge her incredibly difficult decision, and then it happened.

I quietly told he that I had stood exactly where she was standing as a parent just over a year ago.

I looked her in the eye, and told her she was going to get through this.

Within a minute of this, our amazing chaplain Joe walks through the door. This is a true human 'being.' Chaplain Joe's demeanor is so peaceful, he doesn't need to 'do' anything. His 'being' is immediately comforting to anyone that shares space and time with him.

I never told Chaplain Joe my story, and now wasn't the time, but as he and I sat with mom, she barraged me with questions of faith. Was I able to keep my faith? Did I still talk to God? I just shared my experience with her as honestly and in tiny tiny chunks as possible for her. The truth? I took it in the teeth regarding prayer, but my faith never wavered, and that is exactly what I told her. I simply said that my faith is not based on circumstance, so it can't be touched. No one can make me believe, and no one can take my faith away... it's genuinely mine... a gift I gave myself.

We continued to talk, all the while Chaplain Joe quietly listening and affirming. She took a call. Her boyfriend arrived, Chaplain Joe prayed, then left. After her call, I gave her the ocean drum one last time, and her boyfriend a rain stick. This time, I played guitar again, but this time, I played...

... yup...

His Love is Everlasting,

and I played my best for him... pa-rum-pa-pum-pum.

Then something else happened.

When the music was over, I quietly put away my guitar and the rainstick, walked over to mom, knelt down in front of her chair, and asked her if she would like to keep the ocean drum. I explained how memory works in the brain, and that in the grief journey, the pain will subside, but the memory of this time will remain, and that she can go to the ocean with E any time she wants to simply by playing her ocean drum.

I have another one in my closet. It gets played maybe once or twice a year. Now, it'll get played every week at the hospital. Ali cried when I shared this story, because it's her favorite instrument of mine, but I explained we are blessed enough to get another. She loves the fish! It really is a great instrument, and I just felt like it was the right thing to do.

Think about it.

God put me in that room with her on repeated occasions leading up to today, so that another caring parent who'd lost a child could be with her in that very moment... unbeknownst to everyone involved, save me and God.

Once again I say, "Well played, God. Well played. You are the master conductor; the only one who can see the entire musical score. Those of us who can trust the direction of your baton create often times beautiful music with you. It's when we don't follow the baton that dissonance occurs. Thank you God for orchestrating ALL OF IT so that I could be your messenger of hope and peace to E's mom on this very day."

She told me that she had been out of his life for years, only to return just before he was diagnosed with cancer two years ago. I remarked that it seemed completely providential, and that perhaps the entire reason she was brought back into his life was specifically because of his cancer. E got his mom back to be by his side through the scariest, most painful, and final two years of his life. She was there on his first day, and she was there on his last. What more could a kid hope for?

Go be an instrument of God's plan. Follow His lead, and make beautiful music together.

God night.

December 11, 2011: Inspiration Begets Inspiration

2011-12-11T21:40:00.000-08:00

Heaveno!

This is how inspiration works.

Mommy, daddy, Ali, and Julian watch CNN's Heroes of 2011 on the television.

We watch inspirational stories of ordinary people doing extraordinary things.

Our hearts swell upon hearing story after story.

I say to Ang, "You know, it's been a privilege being Bella's parents because in some small way, we've been heroes to parents, spouses, and people that have written to tell us what a difference we've made."

She responds, "I like to think that Bella is the real hero."

Right as always, but it's okay to acknowledge our roles as "supporting actors," I say.

Then, as I look at the picture in the living room of Ali hugging Bella, I turn to Ali and I say, "I know of one other hero who donated her bone marrow to her little sister."

To which Ali responds - out of the blue, "I want to sell my art to the world to raise money."

"Who do you want to raise money for?" I ask.

"Bella's doctors."

So, as I give her a bath, she and I start to brainstorm different ways to share her art with the world. Among many of the ideas, a vlog (video blog) emerges where she'll draw a picture - like Bob Ross, baby - and while we're brushing teeth, she decides she wants to do her first episode tonight. So, with, um, no planning, I give you episode 1 of Ali's Art World...

Life is good. Stay tuned for more inspiration. Here's a seed. When you find yourself inspired, do something inspiring. There's no better time to do so.

God night.

last but not least, one of my all time favorite pics of Bella and me...

December 6, 2011: Guess Who's Coming to Lunch?

2011-12-06T23:50:00.000-08:00

Heaveno!

Dr. John Wagner, Head of the EB Bone Marrow Transplant Program at the University of Minnesota! He is flying out to speak at our Wings of Hope luncheon benefitting Pioneering Unique Cures for Kids at the Anaheim White House in Anaheim, CA on Wednesday January 11, 2012, from 12-1pm. How many prepositional phrases or web links can a guy slam into one sentence?! LOL.

We are so excited he can make it! We just found out over the past few days that he can make it work in his crazy schedule. Normally, when you want a big time speaker like Dr. Wagner, it makes sense to plan the date around his schedule, but since we were gifted this event by 2011 CNN Top Ten Hero Bruno Serato, his team set the date, so we were retrofitting our speakers to a pre-existing day!

The luncheon is coming along wonderfully. We have 100 seats and we are just about half full so far! Jennifer Edling, Daylon's mom, is not only speaking as well, but helping with the decorations, along with the rest of our fabulous Team Bella: our friends Jennifer Thomas, Sara Cooper, Maria Hernandez, and Lara Seto Davidson. To ALL of you ladies, we couldn't do this without you. Thank you for your undying support!

We have seats available if you or someone you know from our area is interested in coming. To register: CLICK HERE. Tickets are only $25 for a 5-star, 3 course meal valued at $60!

What else...

Angelique goes back to work next week! She looks forward to getting back to work on one hand, but is really gonna miss Julian. They have really bonded. I was at a seminar last week having lunch with a friend who lives in Canada. When I told her how long Ang had off, she smiled and simply said, "You should move to Canada, we get a YEAR off as moms, and you as the dad get 6 months!"

Aside from the cold winters, Canada sounded really good right then!

Jane, did I get that right? A year for moms and 6 months for dads? Who was it from Sweden who told us how long you guys get? TWO YEARS? Is that right? You guys have great priorities. I really appreciate that a lot.

Here's potentially a powder keg of a topic... NO offense is intended by the following... just a genuine curiosity over a recent set of events...

Ali now comes home singing Hanukah songs from our public school... should she be learning religious songs of any denomination in public school? All I'm sayin' is the Christmas songs she's learning (if any) better actually be centered on the coming baby Jesus and not Rudolph the Red Nosed Reindeer, or I'm calling foul! LOL. I don't recall them learning any songs for Ramadan... I maybe assumed naively that church and state had been split up in the classroom (for better of for worse) such that we took "the minute of silence" out of the classroom, made the fall music programs "holiday music" and not christian Christmas carols, etc...

Again, we're just now re-entering the public school system, having been out since we were kids... I call it the Rip Van Winkle Syndrome. We have handouts coming home daily of dreidels and menorahs, but I'll be surprised if any handouts of the nativity scene or the cross at easter come home. More likely Santa and the Easter Bunny. Anyone have any insight as to curriculum inclusion/exclusion criteria related to religious subjects? Please enlighten me! I HOPE I don't come off ignorant in all this, I genuinely don't understand. Thanks!

God night.

December 4, 2011: The Holiday Spirit is Alive...

2011-12-04T21:38:00.000-08:00

Heaveno!

LIFE is good.

Did you know that?

The tree is up, the lights are dazzling, the ornaments are dancing, the Holiday music channel on cable is on almost all the time.

Life is GOOD.

Ang had to remind me that we weren't even HERE last Christmas; we were up in Colorado visiting my mom and my sister and her family visiting from Spain.

I forgot completely.

Talk about the fog of grief.

I remember more and more as I really concentrate, and even still, only segments come back at a time. The first time she told me we were there, I was able to recall only one or two images. Now, as I write this, much more comes flooding back.

Sometimes, I wonder at how I was able to function, travel on airplanes, speak at conferences, etc... then I remember that I got lost and couldn't figure out what hotel I was staying at and found myself wandering the streets of Cleveland last November. That was then,

This is now!

There is fun in our home.

Little Julian giggles, smiles, and beams at just about anyone who will engage him. Ali is an ever-blossoming pixie. She delights in playing with her little brother, furiously creating her art (tonight she was working on a dress), cooking with mommy, and tonight she led daddy in call and response hymns in bed that she was improvising on the spot.

Life IS good.

Enjoy the pics.

God night.

November 29, 2011: Full Circle...

2011-11-29T21:57:00.000-08:00

Heaveno!

Possible tissue alert... just warning ya...

When my dad died of cancer in October of 1997, Enya was playing in his bedroom. It was like the sound of angels. Have I told you this story? I was a 25 year old struggling musician. At that moment, I thought to myself, "Wow, if I could be the soundtrack of someone's transformation from life to afterlife, THAT would be the highest use of my gifts as a musician." That moment led me eventually to music therapy. As a music therapy student, I had the honor of playing for a church member as they withdrew life support. I remember thinking that in that moment, I had realized my vision.

However, as you may know, the moment Bella's heart stopped in October 2010, her birth song came on the ipod playing in her hospital room, 45 minutes into a playlist that was playing. I sang along as we unhooked her from the machines trying to keep her alive, and in doing so, I had the honor and privilege of being the soundtrack to my own daughter's transformation into afterlife.

I thought FOR SURE that this was the end of the story.

Nope.

There is no end to the story.

It just keeps unfolding.

Today, I had the honor of playing for a gentleman that I have seen on several occasions. He is a very wise man, a retired lawyer, educated in England, born in Pakistan. I told his son the day I met them both that he was lucky to have such a wise man for a father. I have never spoken that way in front of an elder ever, but it was apparent to me. The father taught me an arabic phrase, "Insha'Alla", which means "God willing" or "if God wills it." In the Qu'ran, Muslims are told that they should never speak of something they intend to or plan to do in the future without adding "insha'Alla" at the end of the sentence as a reminder that it is ultimately God's will whether a thing happens or not, for He has the power to make all things happen or not happen. I love this, because if we can live with this submission in our hearts, it allows us to be free from the illusion of control, and boy, if we can let go of THAT wheel for a while, THAT is a pathway away from suffering, indeed.

Anyway, this wise gentleman has been in and out of the hospital on several occasions, and knowing his diagnosis, I knew that unfortunately, he was not long for this earth. It had been a couple of weeks since I had seen him when I walked into his room yesterday.

I saw death waiting in the corner.

The man was beaten, this time he would not emerge from this room alive. He lay in his bed, propped up, but crumbling. His countenance brightened when he saw me, for we have enjoyed each other's company very much on each occasion. I played my guitar for him, and as I played, I couldn't help but think about the Little Drummer Boy...

I played my drum for Him pa rum pum pum pum
I played my best for him pa rum pum pum pum, rum pum pum pum, rum pum pum pum
Then He smiled at me pa rum pum pum pum
Me and my drum

I felt like that little boy yesterday. I wasn't a doctor, or a nurse. All I had was my quiet little guitar, but boy, I played my guitar for him, and I played my best for him. As I played, one of his sons who I just met for the first time reclined his bed, and he fell asleep. As I said goodbye, he remained asleep.

I didn't know if I'd see him again.

Today, I returned to his room, expecting worse, and I found it.

Death was now up hanging on the rails of the bed.

My wise old friend lay back, eyes rolled back in his head, dispondent. His younger son that I met initially (around 25 years old by the way) was in the hallway with I'm guessing his uncle listening to a resident ramble on nervously," there's just nothing more we can do..."

The talk.

I walked up to my old friend and told him I was here to play for him, but this time, no response.

I got my guitar, but this time it was time for me to say goodbye. Have I told you about the hymn that was written through me intended for hospice patients? I say through me, because it may have come out of me, but it is not by me. All the lyrics and chords came at once one day in 1999... at a time in my life that I was very far from church. It's the hymn I played while my church member began to cross over. It's called "His Love is Everlasting." Here are the lyrics:

His Love is Everlasting

When you feel God’s light upon you

Radiant beams they surround you

Leading you home

When you feel God’s arms around you

Safely and soft they enfold you

Leading you home

His love is everlasting

Though at times you may feel afraid

But his arms are always around you

Leading you home

When you’ve gone astray

When you feel god’s love inside you

Fire from within it warms you

Leading you home

When you feel God’s hand upon you

Strength from his touch is feeds you

Leading you home

REPEAT CHORUS

When you feel God calling to you

Listen and hear him guide you

Leading you home

When you see God all around you

You see all the people that love you

And now you are home

REPEAT CHORUS

Anyhow, I sang this song to my old friend, because this was the moment the song was written for. Then, I sang the first two verses from "Be Not Afraid." What's a christian singing a catholic song to a muslim for? Sounds like the beginning of a joke. Well, last time I checked, the first 5 books of the old testament in a christian or catholic bible are also in the Qu'ran, so I tend to believe we have more in common than we think regarding the foundations of our faith in God.

God/Allah is all powerful
God/Allah loves us
God's/Allah's promises are rock solid
Following God/Allah's way is the path to Heaven beyond

Sound like pretty good pillars to build fellowship upon.

ANYHOW...

By this time, the son and uncle were back in the room. I finished singing, and I played a little instrumental guitar, and then it was time to stop playing. I knew that I do not come back on service till a week from now, and that this would probably be the last time I play for my wise old friend. I chose my final key and final chord in that key very purposefully, and allowed my final chord to ring, sing, and float into every corner of the room and every cell of his body.

Death, you may be here, but you shall not take my friend in silence. You shall take the music with you, and in doing so, it will make the trip easier for both of you.

I walked around to the side of the bed the wise old man was facing. His head was craned to his right. I touched his hands on his chest, and said, "I'll see you again my friend... Insha'Allah," never intending that it would be in this life.

With this, his eyes opened, rolled around a little and fixed on mine. His face lit up like a fire cracker, with a smile stretching from ear to ear. A soft, harmonious coo came from his chest, not unlike the sound my infant son makes when he is happy. It is the sound we make when we are radiating happiness. He rolled onto his back and lifted his head and beamed. His son was there the day his dad taught me this phrase over a month ago, and he delighted in the moment. I said, "See? Never too old to teach a young man something new!"

The pride on the father's face... giving, teaching, transforming even on his deathbed. Knowing while he still breathes, he makes a difference. He MATTERS.

As I walked past the son, I put my hand on his shoulder, and gave him every ounce of love and empathy I could. I gently squeezed his shoulder, and through that squeeze I said, "My brother, I sat where you sit. I felt what you feel. I am with you."

Today, I got to be for him who Enya was for me.

Full Circle.

I love this family, and I hardly even know them.

I bet you can relate to that.

God night.

November 27, 2011: Back to it...

2011-11-27T23:14:00.000-08:00

Heaveno!

It's Sunday night, the end of a long, mostly fun-filled (I think?) week. Ali was off from school all week, which was nice because 1) she and Angelique got to spend some serious bonding time in the kitchen cooking up Thanksgiving tastiness, and 2) I picked up a cold and not having to get up an hour early to get her off to school helped me rest.

Well, an hour and a half into my Sunday post, and some glitch in the almighty internet just sent my words into no-man's land.

We're watching the Hallmark Channel's production of Mitch Albom's "Have a Little Faith." It's good to be with this work again. Ang and I listened to this book and I listened to it driving to Minnesota on the way to BMT. If you haven't read/listened to the book or watched the movie. You should. It's very inspiring. It's what I need right now. In fact, I'm gonna get back to it and say that take the time to get acquainted with this story.

Thanks mom for giving me my copy.

God night.

November 24, 2011: Happy Thanksgiving!

2011-11-24T21:19:00.000-08:00

Heaveno!

Happy Thanksgiving to ya! This holiday, I am most thankful for my amazing family. Our three kids continue to inspire us on a daily basis.

We are chilling out watching a NEW Charlie Brown special! Ah... The Peanuts gang... feels so... nostalgic.

We had a nice Thanksgiving Day at home. Ang and Ali have been prepping and cooking all week, so today, we were in full gear preparing for the big meal. Ang's parents joined us for dinner. Ali and I made place settings, set the table, and stayed out of the kitchen as much as possible as mommy was a woman on a mission!

I had the honor of slicing the turkey, and thanks to some great new advice from Alton Brown on the food network, I am no longer intimidated! He demonstrated a super easy way to dismantle the turkey in seconds. It was awesome! I felt super empowered! It was amazing. His advice was sooooo simple; it's funny how you can look at something for years and years and only see one way to do it, then someone comes along, and in about 30 seconds, completely dismantles what you thought possible. Great metaphor for living and growth!

P.S. Notice the FOUR dessert items... there were only 4 adults and Ali at the table!

In the PUCK arena, I got some really great news worthy of thanksgiving yesterday. In June, Ang, Lonni & Jay Mooreland, and I met to officially organize PUCK & draw up a strategic plan. In contrast to my pie in the sky notions of raising millions in 6 months, we came up with some realistic fundraising goals for the first three years. It was June, and we were 6 months in to the year already, and had raised $26,000 year to date. We decided to pick $50,000 for the year. We had no plan as to HOW to do it, except that we would just stay in action.

Yesterday I found out we've raised $50, 091.00!

That's 50k that goes straight to Dr. Tolar and Dr. Wagner at the U of Minnesota. We love the fact that we know exactly where every dollar goes. In addition, we don't take any salaries for our work in PUCK, so we don't burn any money raised on us.

Now to the important part...

There is no way we would have hit that number without YOU. The vast majority of that money raised was raised online. THANK YOU for all that YOU did to make that goal a reality. We are so grateful to still have you in our lives. We had no idea that over a year after Bella's death, and over two and half years since we started this blog, close to a thousand people a day would be reaching out over the internet and connecting with us. We are so grateful for this. Thank you for keeping our paths crossed.

What are you thankful for this year?

God night.

November 22, 2011: Blink, Blink...

2011-11-22T22:55:00.000-08:00

Heaveno!

Hiya!

Sorry about that! My bad.

I took an unannounced week off from posting! I traveled to Atlanta on Thursday and returned home on Sunday, and posting on travel days doesn't always seem to work out. I attended the national conference for the American Music Therapy Association. I was a presenter on Sunday, but as VP of the Western Region, I have to sit in on meetings that begin on Thursday before opening session. It was great to be with all my colleagues. There were probably about 1,500 music therapists on hand from all over the country, and a few international MTs as well.

I had lots of fun learning about amazing therapeutic applications for the iPad. The infusion center I work in was gifted 5 iPads, and they are being underutilized, so I am going to request some funding to load some relaxation and music instrument apps on them. Then, I will teach the nurses how cool they are for the patients. Once the nurses realize their potential, I think they will talk them up a lot more.

We had a really great business owner's networking session, too, where I got to meet and hear about other music therapists who are also entrepreneurs and all their successes! It was REALLY inspiring to hear their stories. It also confirmed what I knew to be true in my heart which was that there is a group of MTs who are embracing the business and marketing elements outside the clinic and enjoying that part of their career as much as delivering tremendous value to their clients/students/patients. I KNEW they were out there! I have connected with a few out here in the west, but to meet a whole SLEW of them from all over the country at one time... it was really inspiring.

On the home front, we are working away on getting invitations ready for our inaugural PUCK luncheon on Wednesday, Jan. 11 at the Anaheim White House. If you live in southern California, or have friends or family who do, won't you join us? Daylon's mom Jennifer is speaking, and we will have either Dr. Wagner or Tolar speaking via a taped video as it looks like they can't make it out. Since we were gifted the luncheon, they picked the date, so we just have to make do. In a perfect world, we'd plan it around the doc's schedule, but it's alllllllll good. We are GRATEFUL to receive such an amazing gift, and will gladly use technology to bring them to us. If you are interested in more info, shoot me an email at Timothy@puckfund.org.

Thanks to all who have prayed for the end of thrush, because (knock on wood) it seems to have finally left the building! YAY! Ang is still using some meds as is Julian, but it seems that he is off the bottle and back in momma's arms!

Turkey preparations are underway here in the house. Ali is home from school this week, so it's been really cute to watch her and momma planning Thanksgiving dinner, going to the store, already cooking sweets, watching food network together, the whole bit. It's been a great bonding time for the two of them since I've been either out of town or right back to work at the hospital.

Ali's been missing her daddy, and I brought one of her stuffed animals to GA and took pics of her in various places and texted them back to momma to show Ali. I even placed her "Chenna Cheeta" on the podium when I gave my presentation. It was on determining, articulating, and ranking your core values, and since family is so important to me, I gave Chenna as an example!

Chenna looks on while daddy shows off his Fabulous Socks of the Day...

I am looking forward to the break this week. I'm clearly running on empty. I don't get sick much, and when I do, it's my body's way of saying, "HEY! calm down, monkey! I am NOT keeping this pace up any longer!" to which I sheepishly reply, "okay... I'm sorry." I like to have a lot on my plate; it keeps things exciting, but I over-extend like the best of them, and need to pull back on the reigns from time to time. I really look forward to hanging with Julian on Mondays and Fridays for the next 6 months. That's gonna be a nice change of pace.

Happy Thanksgiving to you. I have a lot to be thankful for, and I bet so do you. The key is to sift through all the noise to find all those blessings hiding in plain sight. God's work is to put them there, and our work is to see them! Remember, it's not "seeing is believing," it's "believing is seeing!"

God night.

November 15, 2011: Running... Down...

2011-11-15T22:11:00.000-08:00

Heaveno!

Fried.

Running too fast.

Need to slow down.

Cutting back to 3 days a week to care for Julian part time when momma goes back to work next month.

Can't wait.

Family First.

Been playing 'catch-up' with my business.

Don't EVER wanna play catch-up with my family.

Business can wait.

Regarding music therapy...

Many hospitals (including the one I currently work at...) in the U.S. fund music therapy directly without reimbursement from insurance. Many hospitals also utilize volunteer musicians to come play. Not the same thing, but a great start. There is plenty of room for melody in any hospital, and frankly there are more musician volunteers than music therapists. They help meet the needs of the community. The music therapy can't meet the needs of the community by ourselves; there are less than 10,000 of us nationwide. I just wish the volunteer programs would at least consult with music therapists as to the possible contraindications of using music in such a fragile setting. That can't be mandated, it can only be offered, and it's up to the volunteer programs to accept. There's room for us all, though.

The difference between the two?

Musicians entertain. They perform for patients, and the attention is on the performer/performance.

Music therapists treat medical conditions in patients using music as their treatment tool/modality. They work/play with patients, and the attention is on the patient.

Same medium, different context.

Need sleep now.

God night!

November 13, 2011: Vroom Vroom...

2011-11-13T22:24:00.000-08:00

Heaveno!

... that is the sound of life revving its engines at me.

This week I travel to Atlanta for 4 days for our American Music Therapy Association's National Conference. I am a regional vice president of the association, so I'll be in lots of meetings, I am presenting a session on determining and articulating your core values, and have the honor of co-facilitating a 200+ person drum circle with a team of 8 led by Mickey Hart, one of the drummers from The Grateful Dead! THAT is going to be mind-blowing. I'll tell you why after it's done... Anyway, it'll be great to reconnect with so many colleagues from around the country that I only get to see once or twice a year at best. I hope to meet a bunch of new colleagues as well. Meeting new people is one of my favorite things in the world to do!

There is another piece of the trip that I am beyond excited about. It's kind of a long story, but many of you know that I am a certified NICU Music Therapist, and there has been a revolutionary device in the works for several years now that is going to be a game changer for late term preemies who are having trouble feeding. Anyhow, I have been patiently waiting for this device to make it to market, because I have always wanted to be a part of bringing it to the west coast NICU world. Between my sales and marketing background, being a NICU MT, and a NICU parent, God has prepared me to share this new device in a way that very, very, VERY FEW people are equipped to do. Again, I can't share too much yet, but I get to meet the team that has brought it to market at long last; they're going to have a booth at conference. I spent an animated and inspired hour on the phone with the product specialist on Friday, who has 20 years of clinical NICU experience, and we completely hit it off. My biggest challenge is that my plate is so full of opportunities, I literally have been shelving projects left and right that have come up in the past 3 months. I really want to give this my all, but it's going to mean some tough decisions on how much I can participate in other areas.

One thing that has been tugging at me is the tug of war I'm having over how best to raise money for the U of M. In one camp, there is the charity model. For example, we have our next fundraiser on January 11, called Wings of Hope. It's the luncheon we were gifted by on of CNN's Top 10 Heroes, Chef Bruno Serato from the Anaheim White House. I imagine that the Hageboecks and friends never imagined that 31 years after their initial benefit concert to honor their daughter, that they would break the million dollar mark and raise over one million dollars in one night. That's what happened when we were in MN this month. Wow, that is powerful.

Then there is the philantho-preneur model, where you just go out into industry, make a lot of money providing a lot of value, and funnel a large chunk of it directly to your foundation of choice. I feel like if I try to do both, neither will get up the critical mass to "pop." Currently, I am trying to do both; for when I just focused on PUCK over the winter and spring, it was just too intense... albeit I was in a different space of grief, and I can't imagine NOT working on PUCK. Only God knows the right answer, and she's currently letting me wrestle with myself to find it. No hand-outs going on over here, despite my asking for one! LOL.

Oh, God, why must you be so coy? ;-)

Sorry for the open rant. Sometimes I'm good at keeping to the what's happening stuff, and sometimes I just drift off in my head out loud. Thanks for listening. Blogs can be very cathartic!

Last, I had the joy of playing guitar with the praise band at our new church today. Man, that felt good. the director has been here for 12 years now, and so it is really easy to just slide right in. I looked up during the opening song and saw Ali in her pew looking at me, dancing and singing. Her face was glowing. That was just about the best moment of the day, aside from when she told me how much she LOVES CHURCH. That just makes my heart so happy. Ang and I feel so strongly about raising her inside the church family, and the community, youth program, and music program are so outstanding, we feel like she's in the right place. We're in the right place. That's a good feeling.

God night.

November 10, 2011: What is the sound of one hand blogging?

2011-11-11T00:01:00.000-08:00

Heaveno!

The only thing major to report since Tuesday is that there was one family member missing from the pictures. With no further adieu, thanks to our friend Sara cooper, I give you Julian...

God night!

Let's add Ali...

and Bella...

November 8, 2011: Happy Anniversary, Honey!

2011-11-08T23:24:00.000-08:00

Heaveno!

Well, here we are, another year in to this amazing marriage. In taking a play out of another couple's playbook whose marriage we absolutely respect and try to emulate (my big sister Mary's), we watched our wedding video tonight with the kids. Ali got all excited and dressed up in a made up wedding outfit and started throwing the centerpiece as her bouquet! Totally cute. Her groom? Julian, of course. Too cute.

When we were dating, Angelique and I created a vision for our relationship. It was the following:

"Love Freely Expressed, and Dreams Realized."

That was our mantra, our means, and our end. There is more to it than that, though. There is one major piece that was added when we recited our vows...

WE ARE ONE.

Like Butch Cassidy and the Sun Dance Kid, fighting the world back to back, we stand as one. You know those Chinese finger torture devices? What happens when you pull your fingers apart? They tighten. Imagine our marriage bond as the device, and each finger as each one of us. When the stress of life attempts to pull us apart, our marriage pulls us together. This is a conscious move, and we set it in motion like a computer "if/then" program. If life pulls at us, we get tighter. period.

Life has pulled pretty hard, but thanks to this programming, we just got tighter. Keep in mind, BOTH PARTIES need to agree to this. It truly takes teamwork.

Relationships develop along accidental, circumstantial, or consciously created lines. Which way are your relationships growing?

I love you, Angelique. You are the most beautiful, intelligent, easy going, and POWERFUL woman on this planet. Thank you for an amazing marriage and family. My life is constantly increased by you. I have become the man I am by being inspired by the woman that you are. Thank you for being such a great partner, and for infusing respect, generosity, and love into our relationship day in and day out, even if you don't think you do. I love being married to you, being your husband, and the daddy of your kids. It's an honor and privilege to walk through this game of life together with you, and here's to decades more!

God night.

November 6, 2011: Dawn of a Dream...

2011-11-06T23:07:00.000-08:00

Heaveno!

Well, we're back home, reunited with miss Ali and our pets. Ali missed us and vice versa!

It was great being back in Minnesota. It is our second home for sure. It was great to see new babies, see old friends, even one of our friends delivered their first born yesterday! Congrats, Jeremy and Renee! However, that was all side helpings to our main reason for going...

... date night!

LOL. Just kidding. Although, it was our first date since Julian was born! Thanks again to Ali's teacher Lanai, who has become a good friend, for coming to the hotel and babysitting Julian while we wined and dined downstairs. Dawn of a Dream has been held at this historic landmark in Minneapolis called "The Depot" for the past several years apparently. It has two hotels, an ice rink, and an indoor water park, all in downtown Minneapolis. It's a beautiful old property, and from our window we could see the Stone Arch Bridge, another one of Minneapolis' landmarks that spans the Mississippi river.

It was a grand event, and I FORGOT MY CAMERA upstairs in our room! I had it in my pocket, but then I handed it to Lanai to take a picture of us with Ali's toys before leaving, and didn't take it back. Ali gave us two of her toys to help keep us company while she wasn't with us, and I promised I would take pictures with them in Minneapolis to show her what a good job they did taking care of us...

Totally fired.

I snapped a couple of pics with my camera phone, but they mostly came out really blurry. Luckily, Jay Mooreland took this video of my 60 seconds in the spotlight (literally). They had a TV camera on me and the three guests each spoke from their chairs with their faces splashed up on the giant screens. It was weird because I couldn't see anything due to the blinding light in my eyes, and I couldn't really hear myself, because a split second after I spoke, my voice was reverberating around this giant converted rink across the PA... it was weird. I just pretended (upon my amazing wife's encouragement) that I was in the shower rehearsing, like I did earlier that evening. Here it is...

What was really special though, was when Dr. Wagner got up to speak, he referenced me in his speech, and he named all the EB angels who have earned their wings in the study BY NAME, one at a time. What makes this so special is that he wasn't mentioning cancer patients' names, he was mentioning EB patients' names, and this is a fundraiser for Children's Cancer Research Group. Lonni and Jay Mooreland, and Ang and I got to hear our little girls' names mentioned to 850 people, and we were so proud of our little girls, but also so sad to hear their names be part of that list.

As I looked around at the amazing decor for this event during soundcheck, I saw an AWESOME picture of Charlie Knuth. If you don't know his story, you can READ IT HERE on our website. He is truly one of the great success stories of this evolution of bone marrow transplant. And while I am so happy for him and for his family, part of me wished it was Bella's picture up there. I told Ang I felt like Jesus in the Garden. I just wished that the cup could have been passed over us, but given that it wasn't, it's our job to stand in our faith and be of service to God and to all the kids and families with EB present and future, and keep writing, traveling, speaking, hosting fundraisers, until that one day where, like I said above, EB kids outlive their parents.

I had a parent come up to me last night whose child is a cancer survivor, and he thanked me for all we are doing in honor of our daughter. He gets it; because of the millions of dollars the Haeboecks have raised over the years, his child was the beneficiary of that research and is here today to enjoy whatever life has to offer.

There are a lot of things that money can't solve, but there are also a lot of things that money can. Last night, CCRF raised $970,000.00. In. One. Night. Tomorrow, the researchers at the U will literally be going to work on a new treatment that they have been waiting for funding to pursue that will be a game changer in the leukemia battle. It is really exciting when you can see how and where the funding will go, how it will make a difference, and how this research sets a new baseline for treatment and care. It's not like a consumable experience... it forever changes the way we care for our kids. I never really thought about it all like that until last night.

What these new treatment breakthroughs REALLY MEAN for families of newly diagnosed kids is HOPE.

Hope changes EVERYTHING.

Man, it is good to be in the business of creating hope for others. THAT is a good use of time, money, and energy.

We also got to see a lot of Bella's treatment team last night for the first time since we left the hospital last October. That was really sweet; they couldn't have been nicer (I avoided Dr. Doom, though). They couldn't believe their eyes when they realized it was us! They were really inspired by Bella, and inspired by us coming back to still support them, despite what happened to her. I work in an adult hospital and see my patients die every week, but for the most part, they are fully grown adults who have lived lives, had families, etc. These docs take on rare and incurable childhood diseases and while trying to crack the code, watch children die while they're at work. How they come back to work the following days, weeks, and months and not give up till there's a cure... they inspire us.

Last night I saw the partnership between doctors, parents, their friends and families, and the community at large. It was one big family united to make a difference in the lives of children. That's a pretty inspiring bunch to go hang out with.

The other piece that was equally inspiring was the ages of those in attendance. There were two generations there, our parent's and ours, and ours was just about in equal attendance. What I saw last night were thirty-somethings already involved in philanthropy. Diane Hageboeck said it best to me last night when she said, "Tim, no matter what, you have to make it fun." She was talking about the entire journey. If you make it fun, people will want to come and play. I like that. I can be pretty intense and serious at times (uh, understatement?), but inside, I'm just a big kid walking around in grown up clothes and a grown up body. So, I really like that mantra.

I also gotta tell ya how GREAT Julian was the whole trip! He was a CHAMP! He was totally quiet on both flights, happy for the most part, slept for a lot of each flight... just easy going. He slept in the hotel room in a pack 'n play as if he was home... only got up once each night for a bottle for maybe 30 minutes! CHAMP! Thank you, J-Man for being so AWESOME on your first road trip!

Alright, I'm beat. Time to go to bed.

God night.

November 3, 2011: On the road again...

2011-11-03T22:42:00.000-07:00

Heaveno!

Angelique, Julian, and I depart for Minneapolis in the morning while Ali departs for school, then a weekend trip to grandma's! We are attending Children's Cancer Research Fund's annual Dawn of a Dream gala dinner. This is their flagship fundraiser that began 31 years ago as a way for some friends to support and honor their friends and the loss of their daughter. Simple enough, right?

This is their story:

It Began with a Simple Request...

In December 1979, Katie Hageboeck lost her 16-month battle with leukemia. She was only 13 years old. Before she died, Katie made a special request of her parents, Diana and Norm Hageboeck. She asked that Children’s Cancer Research Fund® be named as her memorial fund and that the money she had been saving for a new 10-speed bike be donated.

Diana and Norm did much more than donate Katie’s money. With the help of friends, they began organizing the first Dawn of Dream® benefit concert in 1980. The event, which was then held in 1981, raised more than $50,000 for Children’s Cancer Research Fund.

For our first 15 years, Children’s Cancer Research Fund raised funds for world class research at the University of Minnesota as part of the Minnesota Medical Foundation (MMF). Donors grew to 2,000 to 3,000 each year, and annual program spending on research and education grew to close to $1 million. In 1995, Children’s Cancer Research Fund became its own 501(c) 3.

...And Grew into Something Amazing

In 1999, Children’s Cancer Research Fund made the decision to take its inspiring mission to a national audience, and grow its donor base by investing in a national direct response fundraising program through direct mail. This resulted in a four-fold increase in funds raised in just 2/3 the time. Since then more than $50 million has been raised for cancer research, which resulted in an estimated $500 million in additional NIH funding for the researchers we support. An additional $21 million has been raised for patient support and education initiatives.

Angelique and I had the honor and privilege of having dinner with the Hageboecks when we were in MN in June, and it was THE most inspirational meal. In the end, we're just parents who 1. fought tooth and nail for our children's lives and 2. when that was no longer possible, fought tooth and nail to make all other children with the same condition's lives better. I know we all fall into number one, but apparently not everybody falls into number two.

Here's the best part, though... as parents, we are simply inspired by our own children. Katie's request set in motion a tidal wave of events... and for me, watching Bella's strength, wisdom, and grace has set in motion a new wave of events... it may only be a ripple in the pond right now, but our promise to her is that it becomes a tidal wave.

I have the honor of being one of three guest speakers at this year's event, albeit a very short speech. Nevertheless, I get to share Bella and PUCK with EVERYONE there, and as a proud papa, I am so grateful to share my family with this much larger family that has been giving of their time, talent, and treasure for decades now. It really is an honor.

***

There is so much to get done before getting to bed tonight, but I have to tell you two short stories from the past 24 hours that illustrate God's Providence at work. Remember the Providence Story of the Day? For those who followed this blog when Bella was born, you remember. For those who have begun to follow this blog after August of 2009, during Bella's first 3 months of life, I blogged daily about witnessing God's Providence in action in our family's life. This is the entire basis of my book, Bella's Blessings: a humble story of Providence. All the stories are chronicled in it, and they are amazing.

Yesterday, I had the honor of playing graveside for one of my patients from the hospital. When I first met her, I played Iz's version of "Somewhere Over the Rainbow" on the ukulele. When I did, the whole family became very tearful, and when I attempted to process with them, they were really quiet and wouldn't explain why they all got so sad. I felt really bad that I had opened up these emotions and then wasn't able to process them, and felt like I really let them down.

Lo an behold, on Monday I get a phone call from the hospital saying that this patient had died, and that the family asked if I could play at the funeral. I left a message on an answering machine and didn't hear anything back. Then at 10:30pm Tuesday night, I get THE voicemail. The funeral is the next morning.

The reason for the tears?

The patient - for the last TEN YEARS - has been telling her family she wanted THAT version of THAT song played at her funeral, and then this music therapist pops into her her room and plays it for her. To them, it was God's gentle way of saying it was time.

If the funeral had been on Tuesday or today, I wouldn't have been able to do it, but thanks to some wonderfully flexible coaching clients, I was able to be there at graveside, playing my uke, singing THAT version of THAT song... just as the patient had always wanted.

Well played, God!

This morning, I had a patient who is literally missing half her brain after major brain surgery. The doctors said she would never walk again. The night after her surgery, she recalls that she heard God command her, "Rise up, my daughter, and walk." So she got up in her hospital bed and started to get out of bed. Unfortunately, no one had told her she was supposed to be paralyzed. ;-) The doctors came rushing in with the nurses genuinely proclaiming a miracle. There was no "scientific way" that she should have been able to get out of bed. Today, she drove herself to her treatment, and is a ball of light, joy, and energy, despite her circumstances, which she has quite a few of.

She gets to share God's power every time she opens her mouth. Talk about credibility! She is missing a GIANT portion of her brain, and you can tell; her right temple is completely caved in, and you can see that there is some serious brain matter and skull missing, but it's not causing her to miss. a. beat.

Folks, you can't mess with that. That is a good old fashioned, real-deal miracle. Because of her faith, everyday, she gets to tell others about it, and thereby bear witness to God's power. She gets to bring God right into people's faces, and confront their doubts and fears head on. She is so filled with gratitude for this opportunity, by the way.

Circumstances don't dictate whether you feel blessed, cursed, or just stressed. You do.

God night.

November 1, 2011: Happy Belated Halloween!

2011-11-01T23:09:00.000-07:00

Heaveno!

Enjoy the pics. Ali hit the neighborhood with her kindergarten buddies, then ran into three more of the crew from her class along the way.

It was just about the cutest thing ever.

Life is good.

God night.

Man, Bella loved her big sis...

Sunday, October 30, 2011: T'was the night before Halloween...

2011-10-30T22:51:00.000-07:00

Heaveno!

... and all through the house...

... there was candy already from the church Halloween party today! LOL. The party fun for Ali has been non-stop since Friday. Oh, to be 5 (and a half) again. Ali's after school program had a costume party Friday afternoon, one of our new friends from our new church invited us to their house yesterday for a big afternoon Halloween party, and today, the church children's program hosted a big party as well.

Party Foul...

I remember when Halloween was only one day long...

I sound like an old man! I remember when... uphill both ways... barefoot... in the snow...

only one day a year for Halloween! LOL

Look at these 21st century men! LOL

Church was good today. After Bella's one year anniversary, I haven't cried in church. That is a welcome relief. I wanna feel good in church! Although, I did have a moment today; Ali was drawing on one of the concern/celebrations cards, and after she left for her "Worship and Wonder" class, I opened the card up, and it read:

GOD

JESUS

BELLA

Just like that. Angelique later told me that Ali asked her how to spell God and Jesus, but didn't say anything more about it to her. I didn't get a chance to ask Ali about it later, but it was sweet to see Bella on Ali's mind while she's at church, too.

On Saturday, Ali and Julian were hanging with me in our bed while mommy was in the rocker, and I really noticed the size difference between Ali and Julian... obviously a bigger size gap than from Ali to Bella when she was born. The moment caused me to pause and try to imagine Bella right there in the middle of them, hanging out in bed with us.

I never wanted 3 kids (didn't want Ang and me to be outnumbered!) but in that moment, what I would have given to have had all 3 of our kids together. Then, I realized I'm going to have to wait till not only I'm in heaven, but for Ali and Julian to get there as well before that moment can occur. That feels like an eternity from now. However, I really do believe that in that moment, it won't have felt like anything more than a blink of an eye. I remind myself that as a linear construct, time is totally made up. Our experience of time is totally subjective and nonlinear. You know the drill, time flies when you're having fun... and it drags when you're bored... ever been in a traumatic event? Then it r-e-a-l-l-y slows down.

I can't recall if I've ever rambled about my Bliss Theory of Time before. If so, it was a while ago. It states that time occurs at a rate equal to the bliss you are experiencing at any given moment. Just a fancy way of restating what I said above... sounds nerdy though, don't it? ;-) LOL... sorry teachers... couldn't resist! Seriously though, what's key to this is not the bell curve of the bliss/time continuum, it's the long tails on either end that make me ponder.

If time speeds up when you are experiencing bliss, and heaven is the ultimate state of bliss, won't the eternity of heaven be experienced in an instant?

If time slows relative to suffering, and the ultimate level of suffering is hell, wouldn't the eternity of hell really equal being frozen 'in time' in your suffering? To me, this matches our more linear notion of eternity.

What I can't reconcile with all this yet is the phenomenon ultra performance athletes and artists call "the zone." In the zone, awareness hits a heightened level, and it occurs like time slows down, but I submit that time is not slowing due to the performer's state of suffering. It's quite the opposite. So, once again, we uncover two truths.

The biggest pitfall of whether there can even be truth is the presumption that there can be only one.

For example, in chemistry, how can like attract like and opposites attract?

How can I have sadness and joy in my heart at the same time over the death of Bella and the life of Julian?

It's why the nature vs. nurture argument is fundamentally flawed. It presumes only one can be the truth. We know now through research in genetics and behavioral sciences that it can often be the combination of the two that leads to all sorts of dis-ease like diabetes, addiction, and cancer. Two truths.

Nature (genetics)

and

Nurture (environment + behavior)

I shall now crawl back out of the rabbit hole. ;-)

***

Thanks again to all who participated in International EB Awareness Week! We were really thrilled with how much attention EB got last week. Our new and improve PUCK website had over 3,000 unique page views by Friday. We had over 300 people text TRIPP or BELLA to 50555 and donate $10 each time to the U of M EB Research team as well. I saw my poster shared over 60 times on facebook, and this video got A TON of exposure as well... something like 2,400 views last week!

Here's another great one you may have seen that got a lot of exposure:

There are just so many good people out there bringing EB to light. Thank YOU for doing your part. It takes a lot of swings with a pick to split a boulder, and the first hundred or so may look like they're not accomplishing anything, but every single swing was needed to make the one that ultimately splits the boulder possible, right? And so it is with us. EB needs each and every one of us just taking one small step past what we think is comfortable or even possible.

One of our values on the PUCK website is Vision. This is what we say about Vision:

"We recognize that the only pathway to discovery is through what is currently "impossible" or "unattainable." We are comfortable facing the impossible, because it means we are pointed in the right direction; the direction toward discovery."

This is not always an easy philosophy to live, but it's made possible by the value we place right above it on the site:

Faith.

We tone it down a little in the verbiage in how we describe faith, but make no mistake, our trust in God is that when we work for Him, we are working for the greater good of all, and not ourselves. This is a life worth living, a game worth playing. This is the gift of faith. It grants vision. Vision grants leadership, leadership inspires action, and action produces change.

It all starts with Faith.

Lastly, thank you all who shared "through the looking glass" your perceptions on what is present in our marriage that keeps us part of the 5%... when you're in it, the view is different, so thank you for showing us a more complete picture of ourselves!

God night.

Ironic that I found this photo tonight after writing what I wrote...

Thursday, October 27, 2011: EB Awareness Week Part 3...

2011-10-27T21:10:00.000-07:00

Heaveno!

I had a profound coaching call (as the coachee) yesterday that reminded me of some pretty amazing things about this game called life, and I want to touch on one or two of them tonight.

The first one is this.

The impact of a child with special needs (in this case EB) on a marriage is crushing. The statistics are like only 1 in 20 marriages survive. Said another way, 95% end in divorce or separation. This was revealed to Ang and I shortly after Bella was born by a loving, concerned fellow church member who sat us down with our pastor to ask how the marriage was doing. I knew the statistics were bad, but I didn't realize they were that bad.

In that conversation, Angelique and I made a decision that we were part of that 5%. However, it is easy to see why the numbers are the way they are:

***

EB moves into your home and takes over.

There is the medicine cabinet on the kitchen counter for the half dozen to dozen medications and supplements that must be added to the child's diet.

There is the treatment table, whatever that ends up being, where dressing changes take place. Dressing changes could be required daily or every other day, and they can take from 2-8 hours.

The bathtub turns into a torture chamber. Period. Even if the child can tolerate a bath, the smell of bleach or vinegar added to the bath to attempt to kill off bacteria permeates everything.

The cases of wound care items turn some part of the house into a medical storage facility.

The child's toys all have to be soft.

The child's clothes can't have any applique, embroidery, zippers, or anything hard, scratchy, rough, or sharp.

I remember one of the first nights Bella came home from the NICU, I got up in the middle of the night to go to the bathroom. As I walked half asleep, all dazed, to the bathroom, a single blue night light emanated a dim, blue haze across Ang's vanity, which was COVERED in medicines and bandages. In that half asleep moment, I thought I was in a MASH unit from the army hospital.

All social outings must be considered from a medical safety lens, and fun and recreation take a back seat to safety and security.

Then, EB moves into your heart and takes over.

You grieve the loss of the future you thought your child had, and the future you thought you had with your child.

You learn to turn off your heart and objectify your child when doing bandage changes. You must become a wound care EXPERT to keep infections at bay, so when your baby is on the dressings changing table (not the diaper changing table), your heart is blindfolded so all you see is a hand, an elbow, a foot, a knee, a fingernail (or lack there of) until you literally put your child back together again with bandages that can cost $10,000.00 a month - EVERY MONTH - to supply if insurance won't cover them... and they often only cover a FRACTION of what's needed.

You learn to ignore all the stares, and dumb comments you get every.single.time. you walk in public with your child.

You try to forgive yourself for being short, frustrated, or annoyed with your "other kid(s)" when their comparatively trivial problems cause them to whine (appropriately) about them.

You try to remember your spouse is the love of your life, and not your medical colleague.

You try not to blame yourself for your child having EB. You invent any and every positive, inspiring, enlightened, faithful context you can to keep you from thinking you did this to your kid... unintentional and unknowingly aside.

***

Now, having said all that, there are the 5% that withstand the tide of circumstance and soldier on together, despite the odds. Why? What are the key ingredients present in the 5% that are missing in the 95%? It's not that the 95% are doing something wrong and the 5% are doing something right. I think it is that the 5% are doing several things that the 95% aren't, the presence of which would change the game for them. You all know by now that we have a couple of equations for living in this house, like E+R=O, and the 3 F's (Friends, Family, and Faith), but I am curious. What do you see? As an outsider, what elements are present here that are missing in families you know that have split? A dear friend of mine, and phenomenal Traditional Chinese Medicine practitioner, Cristo D'Arcy and I want to begin to serve this community, and the first thing we though of was sharing/teaching the elements of a tragedy-proof family. However, in order to teach it, we have to articulate the big/crucial elements first.

This is where you can help.

Please comment on what you see as being the biggest elements present in our marriage (holy cow this is vulnerable) that would benefit struggling couples. This feedback will help us tremendously as Ang and I are in the middle of this whole thing. There is a limit to our ability to reflect and observe ourselves objectively. Thank you for your help. Please be respectful on this; we're not fishing for compliments or critiques. We are looking for something very specific here. What elements are present that you observe that seem to allow us to withstand breaking apart from the enormous stress our family has been through over the past 2 and a half years?

Said another way, what would you teach a struggling couple based on what you've observed us practicing/being/implementing?

Thanks for being our partners in eventually moving the number from 5% to 6%, then 7%, then 10%, etc.

***

I said there were a couple, but I feel like I went on for too long to talk about anything else tonight. I do want to close by thanking all of you that posted my poster on your fb pages! Thank you to all of you that have dug in again and texted BELLA (or TRIPP) to 50555 this week. Collectively, we've raised just about $3,000 THIS WEEK ... ten bucks at a time! THAT is cool, because it shows just how many people are getting involved in taking action for a cure for EB! There are so many ways to take action, and each and every way is VITAL. I highlight SIX WAYS you can be a part of the cure on the PUCK website HERE. Feel free to check it out and pick one (two, or four;)) way that most resonates with you!

If you haven't yet, in honor of EB Awareness Week, would you be willing to share my photo above on your facebook page with the following caption? (or feel free to write your own)

"Meet Tim Ringgold. I read his blog. He lost his daughter Bella to perhaps the worst disease you've never heard of: Epidermolysis Bullosa, or EB. In honor of International EB Awareness Week, I'm doing my part to help be a part of the cure. Please go to www.puckfund.org to learn more about how you can, too. Thank you."

To download the photo, if you're on a PC, just right click on it (I think that's what you do), if you're on a mac, hit CTRL+CLICK and you can download it wherever you want on your computer, then upload it on your wall and tag me. (P.S. If you live outside the U.S. the texting won't work, so just ask people to go to the site and they can donate $10 on the website if they are so moved.)

Thanks!

Despite ALL the circumstances, we remain blessed.

God night.

October 25: EB Awareness Week, post 2...

2011-10-25T22:29:00.000-07:00

Heaveno!

Lord, with so many phenomenal people sharing so many phenomenal ideas, memories, and stories this week, what would you have me share tonight? I feel like I am preaching to the converted about EB Awareness Week.

Perhaps you could ask them to share about EB with their friends and family.

That's a good idea, God.

I am full of them. You just need to ask more often. ;-)

...

And so we begin.

My friends, in honor of EB Awareness Week, would you be willing to share my photo above on your facebook page with the following caption? (or feel free to write your own)

"Meet Tim Ringgold. I read his blog. He lost his daughter Bella to perhaps the worst disease you've never heard of: Epidermolysis Bullosa, or EB. In honor of International EB Awareness Week, I'm doing my part to help be a part of the cure. Please go to www.puckfund.org to learn more about how you can, too. Thank you."

To download the photo, if you're on a PC, just right click on it (I think that's what you do), if you're on a mac, hit CTRL+CLICK and you can download it wherever you want on your computer, then upload it on your wall and tag me. (P.S. If you live outside the U.S. the texting won't work, so just ask people to go to the site and they can donate $10 on the website if they are so moved.)

Thank you. It takes an army to get enough support behind a rare disease to convert it from incurable to curable.

If you haven't been over to see the new and improved website, CHECK IT OUT! Ryan has done such a fabulous job on it. If you haven't read the success stories, you gotta read 'em. They are what keep Ang and me going on this tireless crusade. Also, please sign up on our mailing list! We have more planned for the site, it's a work in progress, but we are really proud of where it's at to date.

Meanwhile, gotta tell you a cute story from life on the home front!

Yesterday was Julian's 8-week check up. He is pretty much exactly 50th percentile in height weight and head. When Ali went to her 8-week check up, our doctor gave us "the magic piece of paper." This was a best practices hand-out on how to get your child to sleep through the night. Well, no joke, THAT NIGHT, she slept through the night AND NEVER LOOKED BACK. We call it the magic piece of paper of course because all Dr. Bindra had to do was hand it to us and it worked!

(Sidebar: Little did we know at the time that Dr. Bindra does magic tricks for his patients when they get old enough to appreciate them! Seriously. Total coincidence.)

It didn't work with Bella, but we blamed EB on that one in order to keep the mojo of the magic paper intact. So, last night, we waved the magic paper over him, sang some incantations... just kidding... and MOVED HIM INTO ALI'S ROOM! woohoo! Ali is so happy about this because she was feeling really left out with the three of us in one room and her alone in hers. She also sleeps like the dead, so he doesn't wake her.

Well, he did wake up last night for his late night bottle, but on each occasion that we put him down drowsy in his crib, he feel asleep on his own! YIPPEE! Progress! We have been laying him in his crib a lot leading up to this, and playing his mobile for him (which HE LOVES), so his crib is not new to him. His mobile is the same model (with dinosaurs instead of princesses) as the mobile we had over Bella's wound care station, and Julian is as mesmerized as Bella was by it. It tugs on my heart every single time I wind it up, but it makes him so happy, so of course it's just one of the million things you deal with.

I think of it like a boxer. A boxer can take up to 1,000 punches in a fight. I'm a boxer fighting through my grief, taking life head on despite it. So, every day, life throws its punches at me, and some I dodge, while others I see coming and know I just have to take. Sometimes, life knocks me down to the mat, but I reach up, and my friends, family, and faith help me back to my feet, and I keep at it, and I never let the ref count to TEN! before I am back standing.

Life can swing hard, and I'm not as graceful as some at going rounds with it. Do you know who I admire? Patrice Williams, Courtney Roth, and Jennifer Edling. They continue to handle EB every day with such grace, gratitude, and faith. I have a t-shirt with all four of our kids on the back, and I am so proud to be among them in this EB journey. I don't know where I'd be without them. They have inspired me to be a better parent, and a better blogger, and by doing so, we here have all been able to participate in this journey in this way we have.

It has been good, and I thank them each for being a positive influence on so many, myself included. Thank you, ladies! Keep up the amazing work.

Thank you to all of you that have already shared, many on multiple occasions, about us in the EB community. We can't do this without you, so thank you again.

See you Thursday.

God night.

October 23, 2011: Happy EB Awareness Week!

2011-10-23T22:24:00.000-07:00

Heaveno!

Well, here we are!

This time last year, we were holed up in a hotel in Louisville, KY, and EB Awareness Week was gonna have to be managed by someone else. ;-) I might not have even thought about it last year, as I was so focused on trying to set up EB Gatherings and Memorials while driving around the country with a 4.5 year old. I was really hoping for lots of people to come to each gathering, and there was some resistance, even a little backlash (one person accused me of emotional blackmail) for challenging people to come out from the internet vail and mourn with us. As I look back now, I realize that part of it was... and this is gonna sound funny... I just needed a hug... I mean a lotta hugs. There was one thing that this glorious medium cannot replace, and that is the safety I feel when just for a split second, I hug someone, and I can let me guard down - even for a second. I had been being so strong for so long, I just wanted to collapse a little at a time into some hugs. It's funny. I could not have articulated that, I don't think, last year (who knows, maybe I did and I don't remember). When I was reading the comments and my post from this day in 2010, I realized that I just wanted to meet, hug, and say thank you personally to the people that literally held us up through so much for so long, and I will never forget those EB gatherings. THAT is LIVING. Coming together in such a meaningful way to share a meal, a word, a prayer, a hug, and a song. Sounds almost like church.

Anyhow, soo much to catch you up on. In anticipation of EB Awareness Week this year, we have been hard at work overhauling the PUCK website. The basic design is the same, but we reworked just about every single page within the site to reflect PUCK's new focus on one disease at a time. Many thanks to the entire team at CCRF, but in particular, the He-Man Ninja himself, Mr. Ryan Durry: IT Master. Ryan has been working with me probably for the better part of 3 months to revamp the site, and while we have even more to tinker with, we are really, really happy with the renovation. Thank you, Ryan!

So.... go on over, and while you're there, please sign up for our mailing list so I can send you all sorts of inspirational emails on the amazing work happening at the U of M! CLICK HERE for the new site! Seriously though. We are really proud of the site. You can learn a lot about the cutting edge the team in Minnesota are doing research on, and find 6 different ways to help in the journey to cure EB!

In other news, I want to thank Sara Cooper and the entire Team Bella who walked in Bella's honor for a second straight year at the CHOC Walk at Disneyland last Sunday morning. We would have been there this year except it was Ali's big day singing at church and leading worship with the other kids, and they had been rehearsing for it for weeks. If Children's worship is on the same Sunday next year, I'm really going to be in a pickle! Anyhow, I just want to say thanks, you guys, for sporting the fabulous socks, carrying the poster, and remembering our little girl.

Lastly, Julian just gets sweeter and sweeter, and each day, a little more joy fills my heart. I had turned off the "son" feelings after we learned Bella was a girl, because we weren't planning on any more kids. Now, that valve is slowly and steadily opening up the more J-Man's personality starts to emerge. I am smitten.

Grandma happily gives Julian his bottle...

while Lucy sits and looks on all dejected....

Tomorrow is his 8 week check up. At Ali's 8 week check up, her doctor gave us "the magic piece of paper." This was the timeline for when she might sleep through the night. Well, sure enough, she slept through the night THAT VERY NIGHT, so we now refer to that piece of paper as "the magic piece of paper" so much that tonight, Ali asked us if we were going to get the magic paper at the doctor's tomorrow! LOL we got her trained, but we really need the J-an trained!

For EB Awareness Week, would you be willing to share PUCK's website address on your email and social media platforms of choice? http://www.puckfund.org. Thank you for continuing to walk with us, virtual hugs and all, ;-). This blog still completely keeps us connected to Bella and keeps Bella connected to all of you. As a result, we're all out doing great things.

God night.

October 21, 2011: Another memorial...

2011-10-20T22:54:00.000-07:00

Heaveno!

Well, we had another memorial yesterday... this time it was for Ali's fish. He gave up the ghost yesterday afternoon. His name was Ring, and he was a male Betta... Ali's first official pet. The other night, he jumped out of the glass I had him in while I was changing his tank. He somehow flopped his way from the kitchen counter into the cookie pan in the sink which had oil in it and water in it... Problem was I was putting Ali to bed when this went down, so he was hanging out in the cookie pan for a while. He was still kickin' and I thought maybe he was like a goldfish that can just about live in a puddle, but he only lasted 3 days after the accident.

I had told Ali on Monday about what happened and that he was pretty beat up from the event. I told her there was a chance he might die, and she lost it. It was rough because for obvious reasons, I want to give the girl a little break from death for a while... as if any of us have that power. We all want that for our kids, but to think we actually can control that... well that's another story.

Ring died while Ali was at school. I talked to Ang and we came up with a plan. She graciously gave me a Tiffany & Co. box she had, and I put a comfy bed of toilet paper in it and laid him in it as his coffin. Then, I cleaned out his little tank and prepared it for a new fish. We agreed that we'd take her straight to the pet store to get another fish. So, when I picked her up, I waited until I had her strapped in so she wouldn't have to cry in front of her classmates, then I broke the news. We then proceeded to the pet store to pick out a new Betta. This time, she picked a female, which is good because she is like one fifth the size of her male predecessor, so her seemingly little tank is comparatively huge!

But the real magic was in deciding what we should do with Ring. We decided to have a funeral in the back yard. Ali decorated the inside of his casket, wrote him a goodbye letter, made him a card, and we dug a small hole in the flower bed, put him inside with his letter and card, closed it up and made a gravestone, then I sang "Happy Trails" to him as his goodbye song. When we walked inside, I could just tell that Ali was complete. She had closure. It was really a sweet time asking her questions and letting her make decisions about how to best say goodbye. I told her that he could be Bella's pet fish in heaven now, and she slowly came around to that plan.

It's not whether we face challenges, tragedy, loss, injustice, etc. in life. It's how. That's where the power is, that's where the game is won or lost. Don't curse your challenges, tragedies, losses, or injustices. They are simply opportunities for you to become your best self... after all it isn't like any of us can really avoid these things. Frankly, if you live in the U.S. and are reading this, you/we are blessed to have what I call "challenge atrophy." Our standard of living is so high, the problems we face are mostly "luxury problems" by comparison to 90% of the world's population. That doesn't make them any less real for us, because this life and lifestyle is all most of us have ever known. We are blessed to be weak in the face of challenge, because by and large, we haven't truly experienced it like so many of our brothers and sisters around the world. In other words, it's a good problem to have.

Bless your challenges; they are here. Now, you can get bitter or better.

Choose.

God night.

Wednesday, October 19, 2011: Ramping Up for EB Awareness Week...

2011-10-19T16:33:00.000-07:00

Heaveno!

Hiya! Sorry I'm late.

Last night, I was cuddling with Julian on our bed, and he was just... so... happy! We just kept hangin' out, and he just kept bein' cute, and before I knew it, I woke up and it was late thirty! So, you got trumped by some cuddle time with the J-Man himself. I figured you'd understand. ;-)

Life is good over here, busy, and a little sleep deprived, but overall good. We are getting the PUCK website revamped and updated in time for EB Awareness Week next week. The overall "look" isn't changing much, but we've been working a little at a time since August to update all the content, the success stories, how you can help, who we are, etc. It's still a work in progress, but on Monday, make sure to cruise on over to the page, check it out, and please sign up for our mailing list!

Now, onto something that I would LOVE if each of you would do in order to support EB Awareness Week. Our dear friend Courtney Roth - SUPERMOMMY of Tripp, has entered the Your Life - The Reader's Digest Version contest on facebook. Would you vote for her and share her with your friends on facebook? This is such an awesome opportunity for EB to be TOP BILLING IN READER'S DIGEST!!! AMAZING!

CLICK HERE TO VOTE FOR COURTNEY!

That's really all to report. Much love to you all.

God day.

Ang, Ali, and Bella back in the day also chillin' on the bed...

October 16, 2011: Fall Fun...

2011-10-16T22:00:00.000-07:00

Heaveno!

Who says winter is "the most wonderful time of the year?"

Even though our southern California fall doesn't hold a candle to the Minnesota fall, it sure still is fun! We spent yesterday carving and painting pumpkins, prepping pumpkin seeds, and Ali and mommy went to "Bat Night" at the Tucker Wildlife Sanctuary about 15 minutes away in beautiful Modjeska Canyon. They did crafts, saw (dead and stuffed) bats, Ali got her face painted... yes, like a bat... good times. Tonight, we baked those pumpkin seeds, this year opting for sweet nutmeg/cinnamon/sugar glaze instead of savory/spicy like last year. They are pretty good! Ali LOVES them, which I completely did not see coming, except for the part that they are SWEET... that goes a long way!

Today, Ali participated in a children's led service at church. The entire service was run by the kids... and I mean like ages 5-12. Bless the hearts of the parents who patiently worked with them these past several weeks prepping them for today, because they did absolutely wonderfully. The most unexpected moment was "Parent's Time." This was really great. Normally, they have "Children's Time" when the kids all come up to the alter for a brief lesson before they go off to whatever they do in Worship and Wonder. Well, today, since the service was run by the kids, they made the parents come up. Ang was holding Julian, and we were in the back row in the corner in case we had to make a run for it with the J-Man when they invited the parents up. It was my chance. To actually RUN in a church service and have it totally be okay! So, off I went, over-striding my way up to the front in a kind of "last-but-not-least" kind of way. Good times.

Ali sang in her first choir performance today! The kids sang "Dona Nobis Pacem" and while it wasn't exactly the mormon tabernacle choir, it was adorable, and it was a milestone: Ali's first musical performance. Of course, when she made eye contact with me, she winked and held up two thumbs up for me as if to say, "Oh yeah, dad, I got this one!" She just gets funnier and cuter every day.

I feel a little uneasy writing all this, because we have begun to attend a new church in our denomination, and while we miss the community of our old church, our new church has a phenomenal children's program, music program, and is much closer to our home. I know that some members from my old church read this blog, and out of respect, I haven't wanted to go on and on about changing churches, because we do love the members and know that we are missed, it's just our new church fits our needs better, and, well, what can you do? It really is the best place for our family right now. The good news is that we are attending church again, and today, I think, was the first service I've attended where I didn't start crying. I think one reason was it was so fresh being led by the kids that it kept me on my toes, and two, I really did turn a corner in my grief journey after Tuesday. I just feel... better... and thank GOD, I'm not (yet) making myself wrong for that!

Anyone reading this that has lost someone knows exactly what I'm talking about... it's the old, I feel bed from feeling bad, but then I start feeling good, and so I feel bad for feeling good, as if it means I'm somehow "over" the person...

Noooo! I'm over (some of) the pain, not the person! What a mistake to confuse those two, and yet I've done it before, so I get it. This time, it's weird; I can feel the urge to feel bad, but I just don't end up there. I'm really grateful for this. I keep plenty on my plate to keep me anxious and busy; missing this 'feeling bad for feeling good' thing has been just fine with me.

For some reason tonight, I had the urge to read what I wrote this day last year, and sure enough, we were celebrating autumn in Minnesota at an apple orchard with my mom, Ang's mom, and our dear friends, the Spectors. I wrote the following that night, and as I reflect on our new church community, it is strikingly poignant:

When you go looking for God's angels to intercede when times are tough, don't go looking for beings in robes with wings. Start with the people in your life. Right here, right now. Those are your angels. Remember my "3 F's Rule:" Friends, Family, Faith. That's all you need when you get blindsided by life. Today, I had all three surrounding me. No wonder I was at peace.

God night.

October 13, 2011: A New Year...

2011-10-14T00:04:00.000-07:00

Julian's Fabulous Footies of the Day! Enjoy randomly placed picks of the J-Man during a recent diaper change (without the gore of course...)

Heaveno!

My auto-filler told me that this date last year had a title of A New Day +2. Well, it was fitting to morph that a little to describe today's post. It is a new year. A major hurdle has been successfully jumped over. Funny, I was afraid of hitting the one year mark because it felt like everything after a year would just seem so much further away from Bella.

Not exactly true.

It is further away from the pain, but no further away from Bella.

THIS is what the healing process of grief work is all about. The memories and relationship don't recede, only the pain attached to those memories and relationships... IF you are willing to walk and work through that pain and fully experience it, process it, and (for lack of a better word) complete it... the pain, that is. Otherwise, the pain stays frozen... attached... glued to the memories, and that is one thing that time does NOT heal.

We live in a very pain-averse society today, and that isn't necessarily a good thing. Pain is a necessary signal sent from one part of the body to the brain to inform us of injury, danger, breakdown, etc.

Suffering, on the other hand, is the story we make up about the pain we experience. If you watched either of my videos at Joe Polish's events last winter, I touched on this important distinction between the two. In other words...

Pain is a signal
Suffering is a choice

Don't be afraid to be in pain. The fear leads to suffering, and then you have pain AND suffering, and it becomes a vicious circle that feeds on itself.

I sit here tonight feeling like a tremendous amount of pain was lifted along with those balloons on Tuesday. I went to work at the hospital today with none of the pain I experienced in the past couple of weeks. If anything, there was a levity present that hadn't been there in a while... so much so that I was literally playing with colleagues, patients, even my supervisor today. I haven't had as much fun at work as I did today in a long time.

I share all this because I think God is using me as a guinea pig to show others what it can look and feel like to not turn away from the pain of grief work. We don't do grief well as a society. There aren't many good models for how to do it that aren't laden with misery or suffering. We are considered "weak" if we seek help.

FOLLY.

The human experience. Death - Life - Death. We (as a body) don't exist, then we live, then we die and no longer (as a body) exist.

Any questions?

And yet, our society is all messed up about this process, as if there is something inherently wrong with it. I tell you this: the sooner we can be free around death, the sooner we can be free to really live! We can be present, we can embrace the now, no matter what it looks like, because you know what? In an instant from now, it's gonna change. Then, it's gonna change again. Then, yup, it's gonna change again! I know, the nerve, right?

No one is guaranteed tomorrow. Hasn't this lesson been seared into our hearts enough? What do you think natural disasters and massive tragedies are? Lessons! They are the opportunities of every day, turned up REAL LOUD so we'll finally hear them through the noise of our busy lives. I realize now that my 5 best friends being murdered the night before the Oklahoma City Bombing in 1995, and the terrorist attacks on 9/11/01 were WHAT IT TOOK for this lesson that tomorrow doesn't necessarily follow today to be permanently imprinted on my psyche. Now, I (do my best to) bless tragedies, because it dawned on me on Tuesday that I now see tragedies in a very specific way:
Tragedy = an opportunity to become one's best self.

You know people like this in your life, in history, I suspect that many of you ARE this way. You RISE UP to meet the challenges of the day, no matter what shape they come in, and you find a way (because there always is one) to see God in it, to bless it, to be grateful for it, despite the sweat you might break overcoming it.

Each of our journeys with its ups and downs, is valid. The stressors are real. They're just not significant or unique, that's all. They are part and parcel of the human experience. They are the resistance that we require in order to become stronger. Muscles and bone don't get stronger without resistance. Mind you, they can wear out from over exertion, and THAT is where self care comes in.

Do not mistake self care with self ish.

Is it selfish to eat to nourish your body? No.
Is it selfish to sleep to replenish your body? No.

Without your vehicle, you don't get very far, right? Wear out your car, and it breaks down. Then, you can't go anywhere, your plans get totally foiled, and you're out a bunch of money in repairs... oh and friends and family have the schlep your poor ass all over the place.

Sound familiar? This is how it is with our bodies. No different. This is how it is with our minds. This is how it is with our souls.

Self care. The pathway to the required strength and courage to face this glorious human experience head on, no matter what it brings. Think I'm full of it? Read about Louis Zamperini. THAT guy has been THROUGH IT... and he's sayin' the same thing.

ALRIGHT, alright... this is me now stepping off my well-worn soap box! LOL.

All I can say is that I truly feel called to share this journey, and so this is me lettin' it rip!

God night.

P.S. Children's Cancer Research Fund put up a fun little video of me in my fabulous socks from the 5k run in June HERE.

P.P.S. It was our dear friend Courtney Roth's birthday today! Go give her some love HERE!

October 11, 2011: One Year Later...

2011-10-11T22:47:00.000-07:00

Anabella Ringgold May 27, 2009 - October 11, 2010

Heaveno!

Wow, so much to share. First off, thank you to all who write the most beautiful letters to Bella. They were just simply wonderful to read. I'll tell you more about it below.

All in all, the day went great. My mantra for the day was "Honor Bella and Self Care"

Near my house, there is (another) park called Peters Canyon that I've written about before. Well, after dropping Ali off at school, I went for a run/hike into the canyon and up to "the peak." along the way, I had a nice talk with Bella, and wonderfully enough, my dad. My dad died October 22, 1997 from cancer when I was just 25, and we were really close. He was an amazingly eloquent and talented writer, but a frustrated author who in the end, "never got that book done." So, I asked him what he was up to these days in heaven, and his immediate come-back was, "I'm writing a book."

Awesome.

He continued, "It's about my son: a man that seeks to make a good decision after a bad one, and an even better decision after a good one."

To hear the pride in my dad's words meant more to me than just about anything on this planet. What a gift that was to hear today.

When I got home from hiking, I was really sore, so in the continued spirit of self care, I went and "got that massage!" No joke; I have a gift certificate I was given LAST CHRISTMAS for a massage and I hadn't ever used it. In fact, it was on the very bottom of my inbox, despite being written on my self care list on my white board, "10. Get that massage." So, today, I did, and it was wonderful. For any of you, I highly recommend getting a massage. You may not think you want/need/deserve/whatever one, but is such a nice way to be gentle and care for yourself. Do it. Even once a year, yes, you can make that happen! :-)

Then, I worked on all the letters for the ceremony, picked up Ali, got balloons, cleaned the house, all while Ang cooked and prepared food for the potluck. Once grandma and grandpa were over, we headed over to the park where we knew we were meeting more friends and family.

We picked a spot way out in the playing field to give the balloons plenty of room to clear the nearest trees, and also to give ourselves the space to do our own thing. We gathered in a loose circle in the grass, and began having the kids all write letters to Bella on their balloons. That was really cute. Then, the adults all took turns reading the 50+ letters to Bella around in a circle while we did our best to keep the kids under control. From Australia to Europe to all over the US and Canada, the letters told such amazing stories. It is simply hard to wrap my head around how impactful Bella's short little life was on this world. We are so honored to be her parents.

I have to tell you, as we were working our way through the letters, Ali came up to me and said, "I wanna go! (meaning, I want to take a turn talking to Bella)" So, when it was her turn, she looked up at the sky and spoke in a way I never imagined a 5 and a half year old could... even Ali. Her understanding, compassion, consciousness well exceeded her normal day to day discussions. It was amazing. Then, when we got to the end, she asked if she could go one more time, and the last one was so heartfelt that the tears started coming. She turned and looked at me and said, "It's okay daddy, I can see that you are about to cry."

I always knew that Bella was wise beyond her years, but today, I learned just how much Ali is as well. What a girl. What a soul.

After that, I read the poem I shared on here back in July/August about the boat leaving the shore on its way to a new shore, and when we all released our balloons, I sang Bella's song as we watched them climb higher and higher into the beautiful sky above us. We truly honored Bella today, and when I say we, I mean YOU and us kind of we! Once again, you were there walking this journey by our sides, sharing the load, making it a whole lot more bearable.

Thank you for that. Thank you for still sharing in our journey. You make it easier.

I had a nice conversation today with my mom who lives in CO as well. She and I co-facilitate a Grief and Loss Retreat in Phoenix, AZ (though I have recused myself while I process my own). Three words I can hear in my head over and over regarding holidays, birthdays, anniversaries of loved ones who have died...

"Mark the occasion."

Whether that means choose to stay in bed and pull the covers over you till tomorrow, whether it means do the same thing you always did, or try something new, bring awareness that the day simply is what it is, and it is important to grant the day the validation and respect it is entitled to. Do something, don't just pretend the day isn't coming, here, or passed. That isn't healthy. So, today, we marked the occasion, and you know who was there?

The 3 F's: Friends, Family, and Faith

I am relieved the day is behind us. As usual, the actual event went way better than how my fear, anticipation, and anxiety said it would go! It just goes to show me once again not to actually listen to anticipation anxiety; it rarely if ever is right. Don't let fear stop you; instead, let the events in reality merit your attention over the events in your head.

God night, and thanks again.

P.S. Thanks again to our dear friend Sara Cooper for taking these great pics and capturing the moment.

October 9, 2011: It's 10:23 already...

2011-10-09T23:03:00.000-07:00

Heaveno!

That title just means it's later than I want to be just getting to the blog on a Sunday night. I had a tank full of gas earlier today and was ready for a good ol' Sunday night sermon, but now, I'm fadin', and methinks this is gonna be truncated by sleepiness!

In fact, I can't even remember what I was all fired up about earlier in the day.

Couple of thoughts:

1) While at church, we heard about Project Hope in Orange County which serves the homeless children that live in our county. Bruno Serato is involved with feeding many of the same kids, and I want to once again ask that you vote for him in the CNN Heroes race. He feeds over 200 kids a night, every night, and has for the past 6 years. That rocks, folks. That's in addition to donating $800,000 in charity luncheons to support local charities every Wednesday at his restaurant... for the next 4 years straight. Please take a minute to vote for him by CLICKING HERE.

2) I only heard back from two people regarding the difference Bella made in their life. The request was a single line two posts ago, so it's easy to miss. On Tuesday, I'd like to read to Bella in the park statements from people as to the difference she made with them before the balloon release. If Bella touched your life in some way, would you take a minute and write her and tell her how? You can leave it here as a comment, or if you can't comment on here for some reason, you can email it to me at Timothy@puckfund.org. Thank you; I think that will make the occasion particularly sweet.

3) I forgot to mention on the last post... the video of Julian? watch it, then watch the very first video of Bella in her cradle. Pretty amazing.

Ugh. Today at church, I was dancing with Julian in the foyer to keep him quiet and I had another flashback. I flashed back to dancing with Bella in the back of the sanctuary trying to keep her quiet. I remember so clearly looking deep into her face while the room spun in the background thinking, "One day, Bella, we'll be doing this on your wedding day."

Today's moment had a cruel taste to it. It was like fate was laughing at me or something, saying, "Not quite what you planned, eh buddy boy?" It was weird. Sometimes I get really confused, because I'll be holding Julian, thinking about if he would even be here if Bella still was (I know that God only knows that, but I'm leaning towards that he wouldn't). I feel horrible sometimes, because as absolutely blessed as I am to have him, I wish I was holding Bella. Oh man, don't get mad at me for writing that. That's about as vulnerable as I could be. Sometimes, the whole cotton pickin' thing is a bit much to ponder, no lie. I know that as his personality begins to shine through that purple mouth of his, I will be full of joy with my little boy... it's all a process, and I have to be patient and gentle... with my self.

Yesterday, we took Ali to Irvine Regional Park, which is this great big park a stones through from our house. They do a really great pumpkin patch for Halloween complete with Hay Rides, a (not very) Haunted House, and pumpkins, pumpkins, and more pumpkins! It was really sweet. I've written about this place a couple of times. It's where Jennifer Edling took those AMAZING pregnancy photos of the family, and where Ali and I rode the paddle boat not too long ago. We had a good time. Julian slept the whole time just about, bless his heart... he hates being in his car seat, so he's pretty much either screaming in it or sleeping in it! Enjoy the pics... Ali wanted to dress up like a pumpkin.

I'll close with one thing I was reminded of from my experience with Bella. Remember to compliment or praise your family every day, because you genuinely don't know which day is your last with them. Just read October 10, 2010's post to see what I mean. Would have never guessed Bella was going to heaven the.next.day. When you finish reading this, go hug/kiss/squeeze your family and tell them you love them. Trust me, you won't regret doing that, even if they end up still being here tomorrow.

God night.

October 6, 2011: Boundaries and Self Care...

2011-10-07T00:15:00.000-07:00

Heaveno!

As I walked into rounds this morning, talk began immediately about a 4 day old baby with an undiagnosed congenital heart disease that will never leave the NICU alive. I was asked if I would go comfort the infant and parents, who are particularly having a hard time.

The child was thought to be "normal" throughout the entire pregnancy... when she was born, they whisked the baby off the the NICU within minutes, and the mommy only saw her baby for the second time yesterday evening...

... sounded just like Bella.

It was at this point that I had to disclose to my new treatment team my story. Only the chaplain knew my story, and I was grateful she was there to support me. I recused myself from seeing the patient given the proximity to Tuesday, and the heightened level of grief I am currently experiencing.

The team was stunned. They had no idea. I kept it brief, but simply stated that it would be professionally inappropriate for me to see this patient at this time. It will not only be appropriate, but amazingly powerful for me to work with such a family in the future when I am further along the healing process in the grief journey, but now is not that time.

I also told them that I wouldn't be in to work on Tuesday. Funny, I hadn't planned on making that statement at that time, but it seemed like the appropriate moment, and no one questioned it, in fact, I heard positive comments about boundaries and self care from a couple of the staff, so that was reassuring.

When I had a private moment a few minutes later, I hung my head against my guitar case, closed my eyes, and prayed to God, "Lord, I know you'll take care of that family, just like you took care of mine."

How do you "say no" to doing God's work?

It felt weird to do so, but self care feels weird to me in general. It feels self-ish, and we all know that word has pretty much a 100% BAD connotation in our minds! To me, self-care feels like someone, or many others, are missing out on my care because I am too busy caring me for me to care for them. That's what it sometimes feels like.

However, I am reminded that my capacity to care for others is directly related to my own well-being to begin with, and the fuel that fills my own well-being tank and allows it to care for others...

... is self-care.

If I run myself empty, what do I have to give? I end up needing others to fill me! Then, I'm not only NOT doing what I want, but actually causing the opposite of what I want! It's not that I don't appreciate and gratefully welcome others' love and support, don't get me wrong. It's just that the joy I get from contributing to others is erased when I sideline myself from not practicing self-care.

That's why I don't overlook the obvious basics.

1) Get a good night sleep
2) Eat healthy
3) Stay active/exercise
4) Engage and connect with my family every day
5) Take my vitamins and supplements (it's better than taking prescriptions!)
6) Talk and process my emotions with my Spiritual Advisor 5x a week
7) Say NO when appropriate

This is my basic self care list; and I'm proud to say that it isn't my theoretical list, it's what I do on a daily/weekly basis, and it's no mystery why I function at the high rate I do (without getting sick).

It's a pretty simple list, but following it sometimes takes more effort than I want it to take, and so I complain, skip one, or both. It's not perfect, but it works. Like me! Not perfect, more like a work in progress that also works in the present.

What's on your self-care list?

God night.

October 4, 2011: One Week to Go...

2011-10-04T22:14:00.000-07:00

Check out our '80's rocker daughter!

Heaveno!

Well, next Tuesday is the day. October 11. One year later. Oh man, I just SHUDDERED typing the date. P.S. My dad died on October 22 (1997). I was working in the hospital today, and had conversations in rounds about patients that were dying. I had to hear the very conversations that were probably being had about Bella and us a year ago. Not everyone I work with at the hospital knows about Bella, so it is weird.

I think I am staying home next Tuesday. I just can't imagine being at the hospital. I can make up the day, so why put myself through the extra pain? Instead, we're planning a little ritual at our local park to mark the occasion with a balloon release in the late afternoon. Ali wants to release a butterfly balloon, and we'll release regular balloons.

If you would be willing to write a (short) comment to Bella about what difference she has made in your life, I'd like to read those at the balloon release. I know that our dear friend Courtney is struggling with the purpose of baby Tripp's life and suffering, and it is only through the outpouring of you all in the blogosphere that renews our faith that these EB angels are here to reach many and bring them (back) to God.

Speaking of God, I've been admittedly pretty quiet about God for a long time as you may have noticed. I've tried going back to church, and it is so unbelievably painful, I haven't been able to summon the courage on a regular basis at all. We've even gone to different churches to try to trick the grief process and it hasn't helped! Grr....

God and I have a good thing going, actually. He knows I'm still licking my wounds and my pride. He knows I still love Him with all my heart, but that my heart is healing slowly. I am comforted that He gives me the space to be mad, sad, distant. I know He can handle it. I know He's not going anywhere, and neither am I. He also knows that I am hard at work on the ground trying to do good work to honor Bella to the degree I can physically do it. I'm healing. I could tell tonight when giving Ali her bath. I can remember sitting in the bathroom with Ali giving her a bath in the past and being CRUSHED mentally and emotionally sitting there. I could tell tonight that the physical pain in my head that had been there once before was not there tonight.

In another tender moment tonight, I gave Ali her first ukulele lesson! It was so cute. We ended up sitting on her floor singing "Down By the Bay"both strumming our ukes! There was genuine fun and joy being expressed by both of us. It was a nice moment, and I was grateful to notice it as it was happening, and not miss out.

That's the thing about being present; today I was present to pain, but also to joy. The pain did not come from the present, but rather from the past, whereas the joy came from the present. I am grateful to have experienced that present moment. I am grateful to still have all of you in our lives.

God night.

October 2, 2011: Camp Out and Book Fair!

2011-10-02T21:46:00.000-07:00

Sorry, I HAD to lead with this... makes you wonder what happened to prompt this sign into existence...

Heaveno!

Whew.

Whirlwind weekend. As I took off my Orange County Children's Book Fair badge and threw it into my car, it landed on my I Love Marketing badge from last week, which was sitting on my NIH badge from the week before!

Told you September was c-r-a-z-y. This Thursday, I speak again, this time leading an interactive Colloquium on the benefits of music therapy in the cancer setting at the Susan Samueli Center for Integrative Medicine on the UC Irvine Campus.

It just never ends...
I once heard of this word, it seems to be the opposite of yes...
I just keep forgetting what it is... :P

Look closely; can you see the rainbow?

So.... the camp out was Friday at Ali's elementary school in their big back field from about 4pm to 9 am the next morning. I was in charge of music and A/V, so I ran the iPod filled with kids music. Thanks to Jodi Angier for burning 4 CDs of music for me as I had no music aimed at elementary school kids! I did a drum circle during the dinner time just to bring in a new angle, and it was sparsely attended, but those who did, enjoyed it very much. I also accompanied the principal on classical guitar while she read bed time stories to the little ones, and that went over really well.

The comedy was watching this long retired boy scout completely befuddled by the canopy that went over my rental tent. THAT took way too long and was just embarrassing! Follow that up with "the air mattress debacle..." So, we have a queen sized air mattress, and it turns out the pump is NOT battery operated like I thought. So I set out to borrow "a pump" from another camper. The first pump I overheated, the second pump I ran out of juice, and it wasn't till struggling with a third pump that I finally got the stupid air mattress full.
I also forgot that it is a home air mattress, not a camp mattress, so the thing rises up like 18" from the ground and uses up half the space in the tent!

Sunrise...

Then....

After only about 15 minutes on the thing, Ali and I start rolling into each other.

It has a leak!

ARGGGHHH....

I also brought a little therm-a-rest backpacker's air pad and ended up smushed against the wall of the tent on this thing while Ali hovered above all by herself on the now hammock of a mattress.

Tearin' 'em down...

That part was no fun, not was the TWO middle of the night potty runs Ali sent us on, one of which she adamantly denies ever happening. Peeing in the middle of the night while camping is one of the low points for sure for so many reasons.

Great mexican food for dinner and pancakes for breakfast helped ease the pain (a little), but over all, I'm still tired and sore!

Log rolling to get the air out...

Yesterday, after coming home from the camp out, Ali and I watched Rio for the umpteenth time. We decided we will definitely make a pilgrimage to see Carnival someday - particularly the Sambodoro, which is basically the "Circus Maximus" of dance. This is where the 2 day long parade takes place, and if you want to simply have your brain blown away, read up on how many people are a part of each parade team, and all the things they get judged on... it is amazing. If you get hung up on the skimpy outfits, you miss the whole thing. It's a cultural thing; they are combining their african, catholic, and native cultural heritages into the biggest celebration of joy on the planet. Samba is amazing.

How was that for a quick tangent?

Then, today, I had the pleasure of joining an author at the OC Children's Book Fair named Darrin Anderson. Darrin publishes his own childrens books to raise money for charities, and he has written a story about Charlie Knuth, one of the most amazing success stories in the EB BMT clinical trial, and has chosen P.U.C.K. to receive any proceeds made from the book! Darrin's own son died from a rare disease as well, and these stories are the stories his son, Henry, would make up at bed time. They are adorable, as is the whole story. You can check out more and buy his books by CLICKING HERE.

Our humble booth!

Anyhow, we shared the outdoor booth today and braved the indian summer to share books and stories with the attendees. It was hot, I'm not gonna lie, and frankly, it zapped the life out of us. We did raise a little money and sell some books, but we also learned A TON about how to actually "work" a booth. Neither of us had any prior experience running a booth at a fair, so we left a lotta money on the table with the people who did stop in, and missed out on hords of traffic that we didn't have a plan for how to attract their attention enough to break stride and check us out.

It's all good; we both admitted going in that the important thing was to learn what we could today so we could do it better next time. At least we were there!

Then, it was off to the grocery story, pick up Ali from afternoon bible study, and back home to watch Arsenal lose to their bitter North London rivals.

Now, before I forget...

Remember Bruno Serato and the Anaheim White House?

Bruno was officially nominated as one of CNN's Top 10 Heroes of 2011!

So, will you please vote for him? You can vote 10 times a day; it's really easy. Just CLICK HERE.

Thank you for supporting Bruno who in turn is supporting P.U.C.K. by donating a luncheon at his restaurant on Wednesday January 11, 2012!

God night.

September 30, 2011: It's Coming...

2011-09-30T08:47:00.000-07:00

Heaveno!

Sorry for the tardy post again... the bed just looked so much more inviting than my office chair after J-Man fell asleep in my arms in the glider last night! LOL.

What's coming?

October 11.

I can feel it.

It's a conundrum; it's anticipatory grief of a grief milestone... lame! Yesterday, I needed to process on the phone with my spiritual advisor in the morning, and the chaplains by lunch time to keep me focused and present enough to do my job at the hospital. There are these shards of awareness that come flashing into my brain about just how awful last summer was, and as each time I write the date in the header, my computer auto-populates the last time I typed that date in there, today was Day +90, and things were pretty intense.

It feels so long ago, like a distant nightmare. But the sadness, just sheer sadness remains. I wish I could say that I am present to the miracles, the inspiration, the legacy, the blessings, but unfortunately the sadness prevails. I stay moving (remember our mantra for survival in MN? "Keep moving"), and I know that the sheer motion I keep myself in helps for two reasons... one, it brings me into contact with new experiences that often do contain happiness, wonder, and discovery, and two, there is an element of being afraid of being swallowed whole by the despair if I stop. I just figure if I keep creating the most inspiring context I can, this will keep my legs moving, and cause some positive ripples in the process.

On the home front, the evil house guest Thrush may just be starting to vacate, but not without leaving its mark. What a nasty thing candida is. Just plain mean. Thanks for all the encouragement on the gentian violet. Ang had bought it, and wasn't happy with the reaction it had with her when she first used it, but was willing to give it a second chance, and is now using it on her and in Julian's mouth, and it seems to be working.

One interesting overlap between Bella and Julian is because of the Thrush, Ang has had to eliminate just about all dairy and sugar from her diet, so we are back to a very alkaline diet and Ang is dropping her baby weight like a bad habit, and it's keeping me skinny, too! That and not going out to eat anymore... that always helps!

Tonight is Ali's elementary school's fall camp out. We are really excited because we live down the street from the school and have observed this giant event for 5 years now from the outside, and now we get to experience it from the inside. Of course, not just the inside, but from the center as I volunteered to be the DJ/MC and lead a family campfire drum circle for all the kids. I figure, I know how to, I have all kinds of awesome instruments that don't get played nearly enough, so why not? I know I'm gonna get hit with "Do you do birthday parties?" and I am toying with whipping up a flyer to have on hand just in case that says, "Drumtastic Birthday Parties," then have some other music therapists actually work the parties, and earn some extra cash that way... why not?

I told you I would tell you more about the trip, long story short, my car started dying on the way out of AZ, and had to turn around and leave it in AZ. Trouble was, I was asked to sing at a memorial the following day in OC, so I hopped on a plane that morning while my buddy Jim dropped my car off at the dealer. Took a cab to church, (luckily had my guitar and a suit on me) played the memorial, then got dropped back off at the airport after the reception, flew back to AZ to pick up the car.... and it wasn't fixed. SO, my buddy lent me HIS car and I drove back to OC that night so I could bring Ali to see "A Dolphin Tale" on Sunday morning (I had PROMISED to take her Saturday, and her sobbing in the car as I walked into the airport terminal is something I won't soon forget).

The good news is the dealer, ABC Nissan in Phoenix, was a CLASS ACT on Monday, and repaired the car at no extra charge. So, my buddy Jim will drive it out here this weekend, visit his parents, then switch back with me on Sunday.

PHEW!

Okay. Gotta run... I have a long list of business items to get done today, and the rest of the camp out team is already setting up (my guilt meter spiked as I walked past them this morning on my way back home and they were lugging supplies in at 8 am!). Still gotta run to REI and pick up our rental tent as well! Ah, the gerbil knows how to keep running, doesn't he?

God day!

Check out the nice shade of lipstick... matches mommy's shirt!

September 28, 2011: Back on Track... (almost)

2011-09-28T10:06:00.000-07:00

Thanks Dwight and Myrna! Look at this hip little schoolgirl!

Heaveno!

Hahaha, I was planning on getting back on track last night and posting a usual post with pics and lots of words like I usually do, save for this past week of craziness... then I went to bed...

... I thought, "I can just do it in the morning. Right now, it's time for some much needed rest."

and rest I finally got. So, back to it!

Last Wednesday, I drove to Phoenix to attend my dear friend Joe Polish's event he threw with his buddy Dean Jackson called "I Love Marketing." They have a great podcast at www.ilovemarketing.com that is really funny and informative if you want to learn about marketing. It is something every organization faces, and many cringe or shrink from, but it can be fun, and when it's done right, does more to allow an organization to realize its dream than anything else. After all, what good is your message if you don't get it to the people who are looking for it and need it?

I stayed with my good buddy Jim, and hit the hay quickly to get a good night sleep before my first day of an event. Live events are high intensity/energy days for me. When I go to them, I elevate the energy I put off very consciously, and as such, I need to have a full tank of gas heading into any live event!

Thursday morning, I walked into the event, and wasn't there 5 minutes before a husband and wife who saw me speak at Joe's event in Jan (see the video here where I explained why I wear fabulous socks whenever I wear a tie) came up to me. Sure enough, the first thing the wife asked was, "So, lemme see your socks!" I guessed someone would ask me that question, but not that fast! I had specifically picked out my two favorite loud, fabulous, striped socks for the two days, and was only to happy to show 'em off!

Then, the most wonderful thing happened.

A gentleman who I would describe in his late 20's/early 30's who is gotta be 6'4", shaved head, and ALL MUSCLE, walks up to me and says, "Hey brother, I just want you to know how many times I have brought people to tears since January by sharing your story of your socks."

I was stunned. I had totally underestimated the heart inside a young guy covered in muscles. Moral of the story? Never judge a book by its cover.

Heard that one before?

Yeah, so had I.

Didn't stop me from ignoring it, though.

So, just maybe it bears repeating in a different way...

Don't discount what's on the inside because of what's on the outside. Would you want someone to do that to you? Yes, we all do it, consciously, and subconsciously, but it doesn't mean we can't be aware of it and practice overcoming this.

Thursday was great; I reconnected with lots of people I hadn't seen at an event since last January, or May, and overwhelmingly, everyone wanted to know how things were going on the P.U.C.K. front. I was proud to tell them about the trip to D.C., and about the recent breakthrough success Drs. Wagner and Tolar are having with the BMT treatment having eliminated one of the chemotherapy drugs and substituting it with radiation. The difference in outcomes of the first two patients has been a little bit mind boggling compared to this time last year. The kids aren't getting sick! Ang and I have such mixed feelings over this because it has only been a year later, and they seem to have "fixed the problem" they were having with adverse reactions to the conditioning regimen...

... if only we had waited another year.

Boy, that'll mess with you, lemme tell ya.

However, the only reason they switched it was because of Bella, Daylon, and Elle last summer getting so sick from the treatment. If Bella hadn't been in the mix, they might have - incorrectly - assumed the adverse reactions were "a JEB thing."

And so, Bella's legacy continues to crystalize... Bella's life and death will make it better for all EB kids behind her.

Still, it is a bitter pill to swallow, and I have to recreate that legacy consciously every.single.day in order to function. The dark thoughts of regret and second guessing lurk just barely out of reach, waiting for their chance to pounce on my heart and swallow it in despair. I remember them; they hung around every single morning during rounds. I could hear them in the distance, just hiding outside the light of God's torch, whispering loud enough so I knew they were there. I have walked through the forest of grief for just under a year now, used to holding the torch up, used to feeling their presence, used to never feeling alone, because they are never far away.

That is why I can never stop fighting for a cure. Because we can't change the past, at least we can work toward a better future. One day, there will be various treatments for kids with EB, and no child will have to die from this disease again. As an orphan disease, this is not a guaranteed outcome. This requires tireless action from within the EB community to ensure that day arrives.

There is so much more to tell you about the rest of the week, but I'll tell you about the rest tomorrow.

God day! (it's 9:55am PST)

September 25, 2011: Even quicker...

2011-09-26T00:37:00.000-07:00

Heaveno!

Sorry I didn't post on Thursday, and sorry this is so brief. I did travel to Phoenix, and we had a small reunion of friends over on Thursday night, and we stayed up really really late playing live music and playing in the pool. It felt good to play.

Tonight, I just walked in the door from seeing my favorite band, Dream Theater, play for I think the 9th time since my first show in 1993. So unbelievably inspirational... amazing.

Julian has been growing like crazy. The thrush persists. Boo, thrush!

Momma and Ali are also doing well. Thanks again to grandma for staying over while I traveled.

Alright. Gotta jet. Just fell asleep with my head in my hands!

God night.

September 20, 2011: Chug Chug Chug...

2011-09-20T22:03:00.000-07:00

Heaveno!

Hi gang. Not much new to report over here. Feeling squeezed. I can feel the ball dropping. Such a crummy feeling. Seriously considering canceling my trip tomorrow to AZ. Wish I could clone myself. Feeling grumpy that I can't (clone myself).

This too shall pass. Not soon enough.

God night.

September 18, 2011: Exhausted...

2011-09-18T22:44:00.000-07:00

Heaveno!

I am so tired. I need a day off. No day off in sight. That's the nature of being self-employed. Some months are pretty mellow, and some, well, a bunch of events end up in the same month and I am running like a madman. That's September right now. November is shaping up the same way, so I am really going to have to keep the reigns tight on October to make sure it stays mellow. In life, I am a sprinter, but I need recovery time between my sprints!

Today, I had the privilege of preaching the sermon at Downey Memorial Christian Church (Disciples of Christ). This is the congregation our old pastor, Dennis Short, is now pastoring. It was "Bring in your pop tabs day" for the Ronald McDonald Houses and Dennis thought it might be good for the congregation to hear from someone who has personally benefitted from all those pop tabs.

Did you know that pop tabs are awesome because you can recycle the can it came from, and still donate the tab to RMH! Its like a two-for-one deal! Also, pop tabs come from soup cans, cat and dog food, as well as soda and beer cans. There are a lot of pop tabs floatin' around out there, so just make a jar in your kitchen, and start putting them away. Then, you can either just drop 'em off, ship them to your local RMH, or recycle them yourself and send RMH a check. It is SUCH AN EASY WAY TO MAKE A DIFFERENCE.

Keep saying your prayers for the end of thrush in the house... it seems to maybe be almost kinda turning the corner for the better today, but too soon to tell. Thrush has left Julian pretty crabby about 50% of the time, which is really not the end of the world by any means, but it is painful for Ang, and must be for him, too, so the sooner it packs its bags and leaves unit 102, the better! Outside of that, J-Man is cute as a button, a total cuddler, and behaving himself pretty well over night. Life is good in the nest.

Ali is just about the sweetest thing on two feet. Yesterday she got to got to two parties; a party for one of her new BFFs in kindergarten at Chuck E. Cheese, followed by a pool party at one of the kids from daycare's house. Today, she came with me to church, then we got groceries, and she went to her new afternoon Sunday School. She meets each new social scene with sweetness, politeness, and confidence. It is amazing to watch. I'm just so proud of how well she can handle new situations and new people. What a gift.

Alright, I leave you with the last paragraph of my sermon today. The scripture was Romans 12:1-14, which was absolutely perfect to describe the synergistic energy that fuels the Ronald McDonald Houses by its volunteers day in and day out. There are so many ways to participate with Ronald McDonald House; from accepting and putting away donations, preparing guest rooms, tidying common areas, light housekeeping, assisting in the office, and let's not forget... COOKING YUMMY MEALS! Whatever your strengths and passions are, there's a way to express them. Kind of like within church, and kind of like life. This exactly what Paul is saying to the Romans in today's scripture. He is saying that God gave each one of you strengths to leverage in His name.

Don't waste God's gifts trying to develop what he gave to someone else.

Let me tell you, God did NOT make me an accountant, and either of the two boards I sit on would be dead in the water the moment they made me accountable for all our finances! However, God has given me a voice to sing, speak, and write with, and it is like the energizer bunny! It just keeps going and going and going... I figure that since I can't control the quantity that comes out, I'll do my best to control the quality!

So, REJOICE in your strengths for they are truly God-Given! RUN with them! Don't apologize or hide from them, no matter what they are. Just make sure to remember who gave them to you, and you'll be in good shape. ;-)

God night.

Ali's monochromatic dinner...

Tummy Time 1...

Tummy Time 2...

Look at that face....

Ali and her BFF Karyssa...

J-Man the Cuddler...

and last but not least, BELLA...

September 15, 2011: Mission Accomplished and Home Again...

2011-09-15T23:24:00.000-07:00

Heaveno!

I am writing this on the plane ride home from D.C. since I won’t get in till late tonight. We are bouncing through the skies above Virginia trying to get above some bad weather apparently. Boy, I hate turbulence… as if anyone actually likes it, hahaha.

Well, mission accomplished...

... But before I go on about today, none of this would be possible without Ang and her mom holding down the fort back home so that I could be not only physically present but focused and mentally present as well. Thank you, ladies!

Today, Dr. Tolar presented the results of the 17 patients that have enrolled in the EB Bone Marrow Transplant Clinical Trial at the University of Minnesota, and I gave the beginning and ending remarks to the panel discussion on regenerative medicine and cell-based therapies.

As Dr. Tolar described it, “It was a 1-2 punch.”

He hit them in he head and I hit them in the heart.

Here is my opening statement. Unfortunately, my awesome camera person thought my camera died when it auto-shut off, so the closing statement wasn’t recorded. It was my fault for not telling her about that feature!

Here is the transcript of my closing statement…

For those of you that regulate the doctors, help me understand, who regulates you? You claim to stand for protecting the vulnerable, but how do you rectify all those that die waiting in line?

Parents of children with rare diseases LIVE their children’s disease. They ARE, in many cases – as was stated – THE experts. Why? Because no one is more responsible for your child than you. To the Academics, Government, and Industry: you get to go home at the end of your day. Parents don’t punch a clock. Don’t dismiss parental consent.

If the reward of all this is progress, the path to progress is unfortunately sometimes through failure, and always involves some level of risk. No risk, no reward. No risk = No progress.

Lastly, this has been a stimulating day and a half conversation, but will disappear into history without action items. So, what one thing can you do this week to address the legitimate challenges unearthed here? Ideas are king, but nothing without implementation. Your presence here indicates your passion and your commitment. What will you bring home with you? What difference will you, yes, the person in YOUR seat, what difference will you make?

Go make it.

Turns out some of them got the message. After the workshop ended, I had 3 FDA regulators and a bioethicist come up to me and not only tell me how much my statements moved them, but two of them got into a very spirited brainstorm with myself and Dr. Tolar as to how to take the clinical trial to the next phase of approval based on our combined testimony today, including how to apply for more funding immediately through one particular channel. My heart delighted as I watched them exchange business cards and talk about next steps.

In addition, the head of the entire event, who works for the NIH, came up to me afterwards to thank me for coming and speaking. I told her that I was accountable to the entire EB community for what comes out of this meeting, so how could I follow up with her to make sure there is outside accountability in the processes that were identified at this event, and she gave me her email address and invited me to reach out to her personally when the first draft of the white paper from this event comes out (which will be in a month according to Dr. Wagner) and she will keep me involved.

I have to tell you how intimidated I was to give the audience both barrels, because there is a large part of me that wants to be liked by everyone and is also non-confrontational. However, Drs. Wagner and Tolar were counting on me, and I know I’ve written about this before (a while ago), but what is magical about the transformation that occurred when I set foot behind the podium was the same thing that gave me strength with all the docs along the way… it was all for Bella.

Being Bella’s daddy and essentially (still) fighting for her has given me a level of purpose and - not confidence - but courage that I simply don’t possess when it comes to fighting for me. Who knows, maybe it is rubbing off a little. I talk a good game, but inside, I’m still just a kid who got beat up for talking back as kid on the playground, and watched my 5 best friends murdered for fighting back with their landlord as a young adult. There is a deep vein inside of me that says standing up for yourself and fighting back can get you hurt or killed, and I have to overcome that totally irrational feeling. Doing it for Bella seems to make it much easier.

I have to say that I felt so privileged to speak with the caliber of researchers that attended this workshop. The best researchers across the country in gene therapy and cell therapy came and presented the amazing groundbreaking research they are doing, coupled with the obstacles and barriers they face along the way. Holy cow; what a devoted, and really, really smart group of people! So many great people are working so hard to help kids of so many different rare diseases. It was very heartwarming.

Dr. Wagner did an awesome job taking notes over the two days and put together an initial white paper of all the topics, challenges, and opportunities covered which will go out to all of us participants this week for review, revision, or addition in case he missed something. I’m really privileged to support him. He has a huge heart and endless passion as well as leadership. He and Dr. Tolar just continue to inspire me to do what I can on my end to realize this collective vision of EB becoming treatable.

One thing we uncovered today which is REALLY EXCITING is that a treatment moves from “experimental” (read: almost no insurance reimbursement) to “standard of care” (read: insurance reimbursement!) after a certain number of hoops have been jumped through. Well, that guy from the FDA that was talking to Dr. Tolar and me felt very strongly that Dr. Tolar has demonstrated sufficient data to move the treatment at the U of M to that standard of care level. This is really exciting, because it means the FDA will give its stamp of approval, which will mean the U will be able to bill insurance companies to cover the treatment! Now… of course he was careful not to promise anything in stone, much less a timeline for this, much less that insurance companies will actually reimburse, but they won’t be able to hide behind the “experimental” defense and say no to coverage! Progress, progress, progress.

Now onto the follow up. That is the key to all of this. Too bad I am not an implementation specialist… I am an idea guy and a connector… front end stuff. Good thing my amazing wife is the queen of implementation! Honey? Will you follow up on me following up? LOL. Hey, play to your strengths, right?

After the workshop, I had 5 hours to kill before my flight, so me and my bags hopped on the metro (D.C. subway), went to the capitol district, hopped on one of those double decker buses, and spent 90 minutes in awe of our beautiful capitol. Then, I hopped off the bus, used my smart phone to find the nearest subway station, and hopped over to the airport on the subway with oodles of time to spare. Man, public transportation… it’s amazing! Enjoy my tourist pics!

National Archives.

U.S. Capitol.

Smithsonian Institute.

Jefferson Memorial.

Lincoln Memorial.

Washington Monument.

The White House.

Lastly, I am excited to be on my way home to my family. I can’t wait to see each one of them. I love being a family man. Earlier in my life, that statement would never have come out of my mouth, and even through the tragedy we have endured, the sublime joy of loving four other people as much as I do has totally been worth all the pain of loss along the way. I’d do it again EVERY TIME.

God night.

Peaceful Bella...

September 13, 2011: In D.C... well, not really...

2011-09-13T20:56:00.000-07:00

Heaveno!

After a gloriously uneventful trip across the country, I find myself back on the east coast. I say back because I was born and raised and (almost completely) college educated between Connecticut and Northern Virginia. Tonight, I type from a hotel in suburban Maryland, just "inside the beltway" in Bethesda. I flew into DC/Ronald Reagan airport, which made me SO HAPPY. That airport is practically right on top of the capitol. You fly right past the pentagon, and can see all the monuments even from the runway as you taxi to your gate!

It was so stirring to see the Pentagon, as well as all the other monuments, particularly after watching all the tenth anniversary specials of 9/11 on Sunday. I was filled with a new reverence. I was genuinely inspired and moved just by their sight. It wasn't the first time I had seen them, but it was the first time in roughly 20 years. Ugh. I can't believe it's been 20 years since I've been to D.C.! I am in shock. I think I actually stopped in D.C. on the way to moving cross country in '95, so it's not as bad as I thought... almost, though.

The other bonus to flying into Reagan is that old town Alexandria is about a 5 minute cab ride away! This is one of those colonial gems where the sidewalks are all still red brick, the streets down near the Potomac River are super tiny, and the town homes are well over 200 years old, but all look beautiful. It's one of those places where you can drop a million bucks on a town home, and while you have a piece of history in an amazing community, you're still in a town home! That's okay with the folks here, though. The charm, warmth, and history more than make up for it. Besides, if you want a house and a yard, there are a plethora of planned communities just outside the beltway in MD and northern VA.

I went to college for 2 years 60 miles south of the capitol, and have fond memories of this area. It was great to be back. One of my closest friends from college JUST moved from Alexandria TWO WEEKS AGO... talk about bad timing on my part! LOL. He was still able to guide me around Old Town so I could find just the right little eatery for me. The first place he sent me had a great bar and beer selection, and he warned me they had some weird menu items, and I thought I was up to the task until I read down the menu and saw...

bone marrow.

Yup.

Ironic that I'm here to talk about my daughter's bone marrow transplant? no?

Needless to say, I passed on the bone marrow and the restaurant!

Virtue Feed & Grain... Home of bone marrow...

Take two... PIZZA!

Andy directed me to a place very reminiscent of PUNCH PIZZA in Minneapolis... complete with the wood fired oven! Check out the comparison!

Punch Pizza...

Paradiso Pizzeria...

YUM!...

Anyway, I had a wonderful meal, hopped in a cab, and rolled up the beltway to suburbia here to my hotel, where I'll shuttle back and forth to the National Institutes of Health also in Bethesda. Tomorrow we discuss protein and gene therapy, and Thursday morning, we discuss stem cell therapy, and that's when I speak. Tomorrow, I show support for the two other advocates here with me. More on them on Thursday.

In the meantime, I am a little intimidated about the whole adventure; I hope that I have a positive impact on those here. My fear is that I will be around academics, researchers, and policy makers, and I just wonder how much experience they have on the front lines of care. I guess that's why they bring us in - to appeal to their human side. I imagine it is a fine line to appeal to that human side without sounding overly emotional and turn them off. I remember what a balance that was to walk in MN. I know that histrionics may work on the political campaign trail and in congress, but in the medical world... it is not taken well.

So, measured tones, but powerful words have been pined over, edited, revised, and rehearsed. I hope they are the right ones.

God night.

No, these are not Julian... it's Bella! (But J-Man makes the EXACT same faces!)

September 11, 2011: Past, Present, and Future...

2011-09-11T22:29:00.000-07:00

(Not) Rockin' the paddleboat at Irvine Regional Park yesterday...

Heaveno!

As I was writing today's date up above, I was struck by how poignant today's date is for the obvious reasons, but for one other. So much has happened in ten years. Take a second and think back... not to where you were on 9/11, but where you were in your life. Where were you working? Where were you living? How old or young were your kids? Did you even have any yet? Who was your significant other? What was important? Now look at yourself. I don't know about you, but for me, the last ten years happened to be massively transitional and transformative, but that was what I was seeking. I wasn't fulfilled; I knew I hadn't even scratched the surface of my potential yet, and I wanted to become more. Today, I feel like I have scratched the surface, and yet, have only just begun. My guess is that the next ten won't be quite as transitional as the past ten, but God only knows, doesn't she? ;-)

What hangs in the balance for me is where will EB research be, and will there really be various treatment options by then, such that no child ever has to die from EB again?

This is the vision that Jay and Lonni Mooreland, Angelique, and I have pledged to create through PUCK, and while I know the ability for us to "control" that outcome is nil, the ability to influence it...

... is MASSIVE.

See, all things that come to pass, both good and bad, are byproducts of someone's unflinching vision. The terrorist attacks ten years ago today were the result of someone's unflinching vision, who in turn influenced a big enough team to implement the horror we all watched on TV that day. I have been studying influence a lot lately, and the authors of literature related to influence ALWAYS discuss that it is a tool that gets wielded for good and for evil. I guess in Star Wars world it might be synonymous with The Force. We get the opportunity to use its power, and in turn we are responsible for the results. It takes vision, but then influence to bring that vision to reality.

In a more inspirational example, think of the influence of Dr. King. He laid out his vision clearly in his "I have a Dream" speech. Today, I watch Ali play in a multicultural setting - whether it is on the playground, at church, in school, at daycare - every single day. All those walls have been nonexistent for her since the word go. That is vision and influence expressed and realized. That is inspiring and empowering!

I guess I have a dream as well, that one day, children with EB and their parents will not face the long slow road of pain and suffering, but instead will have multiple roads to choose from where a better life lies at the end of each one. I know that I am not alone in this dream, and I am BLESSED to stand beside leaders like Brett Kopelan and the entire team at DebRA, Andrea and Paul Joseph and their team at EBMRF, Alex and Jamie Silver and their team at JGSF, and Lonni, Jay, and Ang and our team at PUCK/CCRF. Talk about a DREAM TEAM... I am so inspired by all these people, I can tell you they have caused me to be a better human on this Earth. They inspire me to be the best version of myself I can be.

This week I get the honor and privilege of speaking on behalf of the EB community in Bethesda, MD at the Nation Institute of Health.

I get 5 minutes.

I can deliver a TIDAL WAVE of passion, purpose, and inspiration in 2.

It is AMAZING how when we answer God's call, she lays out so many different ways to support us, and simply conspires to make us successful, despite how it may look from moment to moment. I can tell you that in 2002, I went through a grueling 7-month leadership training program where I was taught how to deliver a "vivid share" that could move a room to tears in 2 minutes while speaking openly and authentically from my heart. Who knew I would rely on that training 9 years later for a completely unrelated event in my life that I would have no way of knowing was coming?

God did.

God sees it all.

God has a plan, and it is beautiful, when seen in its entirety.

The challenge is being human, and as such, being in the painting itself. It is quite the conundrum to behold the painting and be in the painting at the same time, is it not? This is where that gift we give ourselves called faith comes in such handy. For me, one of the principle foundations of faith is trust. Think about any time you've had to hang a picture. Notice that you are so close to it, you can't really see if it's crooked or not. So, you call your spouse in for guidance. They have a view - a perspective on the painting - that is impossible for you to view from where you are. So - because you trust them i.e. have faith in their vision - you ask them for guidance, and follow their commands.

Now I'm sure some of you can't stand to just listen and hear him or her guide you without questioning their direction... I can hear those thoughts now while your spouse is directing you... "THAT doesn't look right... are you sure?" Some of you even say it out loud! There you are, asking for their view, knowing it is clearer than yours, and at the same time resisting the answers you get.

Sound familiar?

Ah, how we do this with our selves, with the ones we love, and with God. We ignore that still small voice inside telling us to slow down, until it either threatens to shut us down through a cold, or even worse, a disease or accident. We ignore the ones we love until an ultimatum gets thrown at us. And perhaps most easy of all, we ignore God, because after all if God truly loves us unconditionally, we can simply get away with it. Now that might sound a little harsh, but hey, sometimes the truth hurts.

Imagine listening and following God's guidance and commands for ten years straight. Where might God take you? On what magical journey is your seat already reserved?

God only knows!

God night.

Fun with Julian's new sunglasses!

Ali's new pet, "Sparkles!" and her new mermaid she painted at Color Me Mine to keep him company... yes, I said him. She named him, not me!

The J-Man sleepeth... way too much today... I fear we're in for a long night!

and the reason we are all here... Bella...

September 8, 2011: Thrush...

2011-09-08T22:08:00.000-07:00

Heaveno!

Ugh. It is upon is. Thrush. Turns out both Ang and Julian have it. The lactation consultant yesterday explained that thrush is common among c-sections because the antibiotics given due to surgery wipe out the flora that keep thrush at bay, thus letting it run amok. Wouldn't it be prudent to ask a repeat c-section patient if they developed thrush in past pregnancies, and if so, prescribe an anti-fungal prophylaxis? However, when you are at a hospital that pumps out 5,000 babies every year (no joke... seriously 5k), that might just be being a little too detailed with the patient. Yes, that was sarcasm.

What this means is pain for mommy and pain for Julian at feeding time, and has left us with one crabby baby over the past 12-24 hours. Luckily, the lactation consultant caught it relatively early and now both momma and Julian are on medicine. Still, it's a bit frustrating since it was really high on our radar, and yet we still couldn't avoid it.

Alright, gotta keep it brief tonight; I'm working on my statement for when I testify in front of the FDA and NIH next week in MD. Dr. Wagner would like a draft by Saturday to see if I'm on track with what the focus of the workshop is. They are conducting a two-day workshop on examining the obstacles in pediatric clinical trials, and Dr. Wagner asked me to testify and tell our story. I am flattered and honored to speak to a body of people that will include the NIH, the FDA, government staffers and officials et al. I have always preached that if you want the right to bitch, first go and be part of the solution. Be of service and earn the right to speak you mind.

God night.

Nightly story time...

Nightly Julian time for Ali...

Bella...

September 6, 2011: Two weeks of Julian!

2011-09-06T23:27:00.000-07:00

Heaveno!

Well, two weeks of the J-Man! Ang took him to his two week check-up this morning. She enjoyed getting out of the house, and being able to reach the steering wheel again now that Julian is in the back seat and not in her lap! He weighed in at an even 9 oz, just two oz off his birth weight. He has been growing steadily, and doing well. He really is so peaceful. When I hold him, time disappears. Ali continues to be completely smitten. It is so cute to watch. Tonight, I put Julian in her bed, and she started laughing she was so happy. It is so nice to watch her recapture her role as big sister.

Life is good here, and I need to sleep. Thank you for your continued support and presence in our lives.

God night.

September 4, 2011: Labor Day Weekend...

2011-09-04T23:40:00.000-07:00

Ali got ahold of the camera long enough to give us a close up of her toys...

Heaveno!

Hey, thank you again to everyone for your birthday wishes and donations (again) to PUCK. I really appreciate it. After looking at the last post, I don't really have anything near as cool to share tonight! I will tell you how generous Bruno Serato from the Anaheim White House is one more time... he took the time to come to the blog and read the blog post! He thanked me profusely for sharing his work with you and asked me to correct one piece of info I shared which is that CNN has not told him he is in the top 10, he wishes to be in the top 10. He asked me to change that and I did, but I also wanted to restate it to be sure I corrected that with everyone who had already read the post.

This weekend has been pretty low key. It was Ali's first full week of school and Friday night felt earned! A three-day weekend after the first full week is a nice reward as well! The funny realization I had this week was how even though Ali is the one going to school, I end up with the new, rigid schedule in the morning as well! I am not a morning person by any stretch of the imagination, so working for myself allows me some freedom in terms of how I start my day. Well, I feel like I am back in elementary school again! Not someplace I really want to revisit. Oh well. One thing I also struggle with, which very well be a shortcoming, is aversion to repetition in my schedule. Even at this stage of my business, I structure my schedule so that I do not do the same thing two days in a row. I'm sure this has its cons, but my overactive over creative brain craves change on a daily basis. It's a wonder I ever finish anything!

In other news, Reader's Digest is hosting a contest called, "Your Life... the Reader's Digest Version." Thanks to our dear friend Denise for pointing it out to me. It's a great contest for me; you have to write a story, insight, something, but it can only be 150 words. THAT is a challenge for me! It's been good practice in honing down my messages I want to share with the world. If there is something you are passionate about that you really want to be confident sharing about, do this exercise: write out the whole scope of what it is in 150 words. It really makes you think about what words/angles you are going to highlight with such a limited number of options to achieve maximum impact. I wish I had done this before my American Idol audition. This was a PERFECT exercise for that setting! Anyway, here is one of the drafts I worked on that I won't be submitting as my official entry, but shared it on facebook and got a lot of positive feedback. Here goes...

Having just turned 39, here are some lessons I've learned:

1. The best gift I ever gave myself was the gift of faith. Faith is something you give your self. No one can make you have it, and no one can take it away.

2. I will get knocked down, and when I do, my friends, family, and faith will be there to help me up.

3. Wisdom does not come from experience alone; it comes from the willingness to learn from experience. Many get bitter while I choose to get better.

These are themes I have written about countless times on this blog, so they won't seem new to you, but notice how concise I am? Shocking, I know. Good practice for anyone with a message.

multitasking!

I am listening to lullabies while typing the blog one handed, and the songs are working on ME! I just fell asleep here and need to wrap things up! Life is good here in the nest. Mommy is getting a little stir crazy, but outside of that, life is good.

God night.