January 31, 2012: Prayers for Jonah...

Heaveno!

We're doing well; life is GOOD.

Our little buddy Jonah is having a rough week, though, and could use your focused prayers.  Please also say a prayer for his amazing mommy and daddy, Patrice and Matt.

Go give them some love, be good to the world, and we'll see you Thursday.

God night.

January 29, 2012: Grace...

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...

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

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

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.