Monday, March 28, 2011

March 28, 2011: The results are back...


Here is the shirt I wore on Saturday to a few birthday parties...

We found out Friday afternoon.  Angelique walks in the door from her business trip and hands me this BEAUTIFUL (not) postcard from Texas, and says, "Turn it over..."

... and this is what it read...

We are beyond blessed and relieved.  Thank you for all your prayers, intentions, thoughts, wishes, etc.  While it doesn't ease the pain looking back one bit, it eases the worry a hundred fold looking forward.  There is a little more to it; Julian is a carrier, like Ali.  Having said all this, I can't wait to pinch that little guy and find out for myself.  No offense, science, but the final sigh of relief will come when I am holding him in my arms... safely.

Next post, I'll have to tell you what Bella told me about the whole thing back in January...

God night.

Wednesday, March 23, 2011

March 24, 2011: Out of the trough... and back in again.


Ugh.  The pain of grief.  Man, it hurts.  First off, I want to apologize to anyone who has lost a loved one who I maybe rubbed the wrong way in those first two months after Bella died.  I am in so much more physical, emotional, and spiritual pain now than I was then.  I was in shock then, and I knew it to some degree, but this past week it has REALLY become clear how much so.  I haven't yet gone back and read what I wrote (really dreading re-reading ANY of this to edit for a book), but I'm sure I had some arrogant moments.  Please forgive me.

I am also pretty sure that I completely forgot to tell you about last Saturday morning.

Saturday was Founder's Day at my Alma Mater, Chapman University.  It is the day where we get together and have a reunion, share in worship, lunch, and some good speakers, and raise money for scholarships for kids from our churches, Christian Church - Disciples of Christ, and United Church of Christ.  Anyway, we have not been going to church since we returned home (big confession).  We went back I think twice, but it was far too painful.  (After my 5 best friends were murdered in 1995, it took me several YEARS before I could sit through church without balling my eyes out.) So, seemingly out of the blue, I got an email from Cisa, Associate Director of Church Relations at Chapman, letting me know that Dennis Short, the minister at Bella's CA memorial, was being awarded Church Leader of the Year, and she asked if I would introduce him.

First off, I literally forgot about Founder's Day.  Felt bad about that, because I really like going to Founder's Day.  That's just how disconnected I had become so quickly from my church.  Second, Cisa was the one who organized and gave me the green light to do the memorial at Chapman.  Third, Dennis is the man that married us, prayed with us through both births, and mourned with us in November.  How could I say no?  It would be my honor.

Then, I found out that the worship service where they were giving the award was no longer in Memorial Hall where I was used to it being.  Its new location?  The Wallace All Faiths Chapel where Bella's memorial was held.

We were going to be on the same dais again.  Me and Dennis.

Dennis wasn't told who was going to introduce him.  It was meant to be a surprise.

Here is my introduction.  I include it in its entirety because you should know Dennis like we do.  There is SO MUCH MORE to tell about him, but this is a start:

Dennis “Answer the Call” Short

It is said of leaders that they answer the call, whatever it is.  If this is the case, then this year’s award for Church Leader of the Year is well placed.

Dennis Short has answered the call his entire life.  Sometimes that call came from God, sometimes that call came from his fellow man. 

Growing up in a family active in its church gave Dennis early practice at answering the call.  Upon graduating high school, Dennis found his way to Chapman College on a –get this – athletic scholarship.  Two years into college, Dennis met Linda on the first day of school, and he certainly was wise to answer the call then!

Upon graduation, Dennis answered the call to ministry by moving to Indianapolis, IN to receive his Masters in Divinity from Christian Theological Seminary in 1968.  Since then, Dennis has answered the call within church leadership to serve on the PSWR staff, and sit on or head up too many committees and councils and panels to even recount. 

He even answered the call from his Alma Mater.  Chapman College called Dennis to be Chaplain/Campus Minister in 1975.  In the late 1970’s Dennis was one of the founders of the Peace Studies Program. Dennis earned his M.A. in Counseling Psychology in 1985.  During his tenure at Chapman, Dennis always had a staff of two – seven student assistants.  Over 20 of those students have answered the call and gone into the ministry themselves.   Upon his retirement from Chapman, the Faculty voted to give him an Honorary Doctor of Humane Letters.

Since his departure from Chapman, Dennis has answered the call as Interim Minister for the Garden Grove First Christian Church, the Community Church Congregational (UCC) in Corona del Mar, California, and a 15-year pastorate at Harbor Christian Church in Newport Beach.  After more than tinkering with the idea of retirement, Dennis answered the call yet again and is currently the Interim Transitional Minister at Downey Memorial Christian Church in Downey, California.

Why am I the one sharing all this with you?  Well Dennis has answered the call from me on many occasions as well, (by the way, Leaders also have to be able to “Make the calls…”  Anyone in here ever have to answer the call from Dennis?)

When my wife and I wanted to be married, we found Dennis over the internet and he answered the call and married us.

When I wanted to come to Chapman to get my degree in Music Therapy, Dennis answered the call by connecting me to D.O.C. and DanO and Cisa.

When I had my first guitar recital that I actually allowed friends and family to attend, Dennis answered the call and was there.

On the morning of my first daughter’s birth, it was Dennis that led the prayer with the nurse, Angelique’s mom, Ang and myself.

When my second daughter was born with a rare, fatal childhood disease, Dennis is sitting with my wife in her recovery room when I returned from the NICU for the first time.

And when it was time to mourn the death of our daughter, Dennis answered my call and led her memorial service from. Right. Here.

Leaders answer the call whether morning or night
Leaders answer the call whether they are busy or tired
Leaders answer the call no matter the cost.
Leaders answer the call whether afraid or not.

My friends, Dennis Short has answered this call his entire life, and for this reason, it is my HONOR to introduce him as our Church Leader of the year.

Well, before the service, I found myself out back sobbing, and I certainly didn't make it through this speech without crying either.  I couldn't even fake it or hold it back.  I just plowed through, and when he rose to receive his award, I gave my wonderful friend Dennis a hug very few get from me.  If my dad were still alive, he might get the hug I gave Dennis.  What that man has meant for Ang and me over the past 8 years, wow.  I always said that I wanted us to have a relationship with the man that married us.

Boy howdy did THAT ever work out.

It was quite poignant that the service was in the same space as Bella's memorial.  Full Circle.  I got to contribute to Dennis.  Oh, and the preacher that gave the sermon of all sermons shortly after me?

Alvin Jackson.

We shared compliments on each others' speeches afterwards, and I told him that we weren't called to that spot by Cisa to minister to each other necessarily, but that was what God had in mind.  After listening and watching him, I said to myself, "I WANNA PREACH LIKE THAT!"  After the service, another preacher from our region who is quite a preacher himself, asked me, "Are you sure you're not a preacher?" to which I responded, "No, I'm not sure."

To bring the hope, the warmth, the light, the energy, and the love of God into people's hearts through my words... spoken, written, or sung.

This is my purpose.  This is what I am built for.  This is what brings my ULTIMATE JOY.

Thank you for letting me 'preach' to you.  For those of you still with us, you may not always agree, but you listen.  Thank you for that.  Thank you for sharing your attention, time, prayers, thoughts, wishes, intentions, and energy with us.  I just write, but you come here and read.  That means so much to us, you don't even know.  You don't even know.

Now, here are two other items I threw up hastily the other day when I wasn't supposed to be on the blog.  Sorry, couldn't help myself.  In the chance you didn't accidentally check the blog, here they are for you now...

1)  The chromosome tests for Julian all came back normal!  So far so good.  That rules out the chromosomal disorders like Down, Fragile X, and the various other Trisomy ___ syndromes out there.  One set of scary tests down, one really big one to go.  The genetic counselor had more info to share, so Angelique hopefully will catch up with her today.  We're hoping she knows more accurately when we'll hear back on the EB test.

2)  We are building a suite of products, services, and information that are going to be initially tailored to parents of children with special needs, critically ill, and deceased children.  We will be donating half of every dollar we make to PUCK.  If you have been positively touched by our journey and my writing, we would be honored if you would be willing to write a short 3-4 sentence testimonial we could use to help launch our services.  The testimonial could be about how the blog has impacted your family relationships specifically.  We want stronger families.  We want stronger marriages.  We hope that at the end of our life, not only did we work to this end through our own marriage and family, but also positively impacted scores of others as well.

Really, if you feel called to write a testimonial, it can be about any area that may have been impacted in case you don't fit the above description, and that will help us at some point, so please, we welcome any testimonials here!

Please send your 3-4 sentence testimonial with your name could Just be First name and Last initial if you want), city/state/province/country, and please, if you are willing, send a picture as well.  Photos exponentially help with testimonials!  If not, no worries, text only will be gratefully received and appreciated as well!

Send them to

Thank you very very very very much for this.  We really appreciate your support!

God night.

Tuesday, March 22, 2011

March 22, 2011: Gutted.


Sorry - forgot to post last night.  Got wrapped up in a project for the upcoming music therapy conference I am conference chair for.  It's been like a part to full time job managing this event, and I am not gonna lie that I'll be happy when it is over. It is going to rock, but I am looking forward to seeing it in my rear view mirror so I can get back to my own stuff with PUCK and The Divine Planet.

Ang is in TX for business this week - lots of all day meetings for her.  Ali is on spring break from pre-school as it is on a community college campus and the CC as a whole has spring break.  Luckily, Ali's daycare lady, Joanie, is happy to have her back for a week.

Last night, I had the worst dream.  I was back in the hospital with Bella again, except it was a different hospital, and Bella was only 3 months old.  My favorite nephrologist  from U of M was her doc, and she ended up intubated again, but they didn't give her enough paralytics or sedatives so she was writhing around in pain and fright, and her ET tube was coming out of her mouth.  It was me and her again, and when I woke up, it was like I lost her all over again.

I can barely put one foot in front of the other today.  I am writing all this out this morning in the hopes that I get it out of me enough to where I can function mentally the rest of the day, because right now, I just want to curl up on the couch, pull the blanket over my head, and wait for tomorrow.  I know that's not really possible, so this is one way for me to cope.  Another way is that I dragged myself to the gym and did my full cardio workout.  It was a G-R-I-N-D, but it got my body moving, and at least I won't have that hanging over my head as well.

In addition, I am now listening to books on audio while I run to see if I can elevate my focus above what my body is doing.  It is really challenging.  I am listening to a survey of 50 self-help classics from the past 2,500 years from around the world, and it is really fascinating.  Self-Help is not an American or 20th century genre at all.  The principle theme cross-culturally is that humans have the unique capacity to change.  Don't like your circumstances?  You can change them.  How?  By how you see them first.  THAT is the gem most people seem to miss.

One of this morning's excerpts was from Viktor Frankl's Man's Search for Meaning.  Now THAT is a guy who has been put to the test.  Wow.  It was very heartening to listen to his insights as I was struggling through my morning.  I was really grateful to have his story come up on my iPod TODAY.  I really needed it.  That guy watched his wife, mother, father, and brother die (among scores of others) in the concentration camps of Auschwitz and Dachau.  Here is the most powerful quote I heard:

"It does not really matter what we expect from life, but rather what life expects from us. We need to stop asking about the meaning of life, and instead to think of ourselves as those who are being questioned by life – daily and hourly. Our answer must consist not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual."

Man, is THAT powerful. 

God day.

Friday, March 18, 2011

March 17, 2011: Happy St. Patty's Day to Ya!


Although you're reading this on Friday, Happy St. Patrick's Day to ya!  Aside from some green in our wardrobe, the day was rather normal.  I did talk to the gal at the UPS store in an irish brogue the entire time from enter to exit, though.  That was fun.  One of my friends called me while I was in there and then I went on a full rant.  Aye.  All in good fun.

Ali got to hear Julian's heart beat at the OB checkup today!  That was cute.  Especially because it's the same OB that delivered Ali!  That must be a little bit of a trip for the doc.  She is relatively young, and we think was in her first year of practice when we had Ali, so it's not like she's seen this that much yet in her career.  That was cool to see.  She was genuinely tickled by the moment as well.

There is some real joy right now in this house about Julian's arrival.  Now that we know who's in there, and we've seen pictures and heard his heartbeat, it is so much more real.  He's already here!  He's just chillin' out for a while till everything has fully taken form.  Joy.  Man, that is welcome here.

By the way, Ali is ECSTATIC to have a baby brother!  She is so funny.  You may recall that she thought long and hard about the fact that she really likes her toys, and that a baby sister might want a piece of those toys.  So, when it came time to tell her the news, I simply said, "Ali, remember how you wanted a baby brother, so you wouldn't have to give up your toys?  Well, you were RIGHT!  You got a baby brother!"  To which she jumped for joy like she won the lotto right in front of her two pre-school teachers.  They preceded to smartly reinforce the happiness, joy, and excitement over it being a boy, and within 3-4 seconds, we IMPRINTED that joy!  Since she had been so fickle - one day a sister, next a brother,  I figured all we had to do was frame the news in a way that made either answer awesome and she'd be happy.  She is just so happy she gets to be a big sister again.  She was made to be a big sister.  She talks about Julian all the time, and is just very considerate of him.  It is so sweet.  Julian is a lucky guy to have such an amazing big sister, and Ang and I are lucky to have such an amazing daughter.

In other exciting news, tomorrow night, I have the honor of being a part of another movie premiere!  One of my mentors, Christine Stevens, appears in this new movie called Discover the Gift.  In part of it, they chronicle the work she did in Iraq using music to facilitate conflict resolution between the Iraqis and Kurds.  Her story is extraordinary, and it landed inside this movie and accompanying book.  Well, it is being premiered at Agape International Spiritual Center, and folks are going to be led into the Sanctuary by a drum procession, and I am one of the drummers.  Then the drummers will take the stage and create an ambient backdrop for a dancer who appears in the movie to dance.

Then, after 20 minutes of creating the energy, I step up.

My job?  To get the crowd participating in the rhythm.  For the last 10 minutes, I will be building the energy of the room by having the crowd play body percussion and vocalize until we bring the energy to a TEN.

Then, we turn the stage, the energy, and the Sanctuary over to our host, Dr. Michael Bernard Beckwith. When I got to meet the Reverend Michael in November, I had no idea that 4 months later, I would be on his stage handing the mic over to him to introduce this film.  Christine is in Michigan conducting a HealthRHYTHMS training and can't be there, so she sent me in her place.

I tell you, this is one of the highest honors I have been given.  Agape is a world-class Spiritual Center, and this book is one of Crown Publishing's top priorities for 2011.  For Christine to trust me with this moment, I am so honored and humbled by this gift she has given me.  Thank you, Christine!

So, it is late, but I am WIRED on too much caffeine and way too much adrenaline.  I gotta figure out a way to calm down!  LOL.  So, off to PRAY.  Man, THAT feels good again.

God night.

Tuesday, March 15, 2011

March 15, 2011: Blue!


Behold, Julian Clayton Ringgold

Due date:  August 25, 2011.

Ultrasound report:  Normal results at this stage.

Amniocentesis results:  2-4 weeks to be conservative.

Somebody buy me some pee pee tee pees! LOL.  How do keep that thing from blinding you during diaper changes?

God night!

Monday, March 14, 2011

March 14, 2011: Blue or Pink?

Ali's amazing mini-muffins she made with Grandpa...


We'll know tomorrow!

Tomorrow, we go for the ultrasound (boy or girl) and the amnio (EB or no EB).  We'll find out about whether we'll need Barbie or GI Joe under the Christmas tree right then and there (hopefully), but it will probably be 2-4 weeks before we hear back on EB.  We've been waiting since December, and in our heads, we've already prepared ourselves to wait till April, so tomorrow is at least a step in the direction, but not the destination.

Check back with Ali tomorrow about whether she wants a brother or sister; it changes regularly.  Today, it was sister apparently.  Last I heard, it was brother, so who knows!  All I know is that Ali gets cuter and wiser by the day, is LOVING her school, and can't wait to go to kindergarten.  In fact, I was filling out her registration forms today, and it was just boggling my mind.  I shuddered as I filled out the PTA information sheet; not because I don't want to be involved, but because I'm now filling out PTA forms!

When did this happen???

Well, we have some good news and disappointing news on the PUCK front.  First the good news: the University of Minnesota has extended their contract for their text 2 donate program for another year!  It was to run out at the end of April, and at first they were planning on letting it expire.  However, I found out this morning that it will be renewed!  That makes me SO HAPPY, because it will allow me to build this strategy out over time with much greater success.  A lot of my seminar holding friends do big events, but frankly, there weren't any others planned between now and May 1.  Now, I can really harass them into giving me 15 minutes at their big events over the rest of the year.  Man, that makes me so excited!

The bad news?  I received an email today that the mall that contacted us about doing Bella's Birthday Bash in the winter, the mall I met with and exchanged confirmation emails about the date, today, less than two months out from the event, decided that we should do an in-store event with one of their retailers instead.  Cool, except that is quite a deviation from the plan that has been discussed since December.  Angelique and I had some concerns because they kept saying on the one hand that they were excited to work with us, and on the other hand that they don't do these kind events for outside charities.  We just figured we were really lucky and blessed, but as time went on, we were wondering what was in it for them to do this event at all?  After all, wouldn't this open a Pandora's Box of other charities wanting the same treatment?  So, we can't say we are surprised, but we are disappointed.

Three great lessons to be reminded of in all this:

1.  Get a contract signed.  That's when you know people mean business.
2.  Make SURE you are working with the decision maker.  At our first meeting, I though I met them all. Turns out there was another player in the mix that I never got to meet who was the final decision maker.
3.  Never let someone else do your selling for you.  I made the mistake of thinking that because the people I met with were all three on board and excited, that this would translate UP the proverbial ladder. Nope.  Rarely does it work that way.  Find the decision maker, and sell them personally.

When I use the word "sell" above, I use the definition from the dictionary on my mac:  "To persuade someone of the benefits of."

No one can sell (persuade someone of the benefits of) your message like you can.  This is me typing to myself right now.  It's funny; I've been trained in all this stuff before in a professional context, and I guess need to start thinking that way with everything related to PUCK and Bella-related events, products, services, etc.  No one can tell our story like Ang and me.  After all, it isn't anyone else's story!

In other news over the weekend, thanks to Grandma, Ang and I got to:

1)  go out to dinner
2)  go to an event/party where we got to tell our story to about 30 people.  The host then made everyone get out the cell phones and text BELLA to 50555 to donate $5!
3)  sleep in
4)  go to brunch on the Queen Mary!


It was sooo nice.  We love Ali to pieces of course, but it was such a treat to get to spend about 22 hours just together as the couple we are.  We missed each other!  We got to have grown up conversations that lasted as long as we wanted them to!  Oh, and the sleeping in thing... oh MAN, that was AWESOME.  Seriously, we bonded sooo much.  I can't recommend it enough to other parents.  Do the little bit extra work to figure out how to pull it off if you haven't in a while.  You need it more than you realize!  For those who do this already, KUDOS to you!  We have to water the roots, not the fruits, folks, and the roots of the family is THE MARRIAGE.  The fruits are the children.  You can't water the fruits directly on a tree, last time I checked.  If you want beautiful healthy fruits, you gotta water the roots.  (Thanks to T. Harv Ecker for introducing me to this analogy).

Alright, a confession.  I miss you guys, too!  I have looked at this funny box I type into nightly through one of the most intense 9 months of my life.  I miss talking to you daily as well, but I am committed to bringing out more than just this blog to people and in order to do so, I gotta restructure my time.  Thank you for understanding; we hope we won't lose you.  You've transformed this experience for us into one of continual growth, learning, and hope.  Thank you.  We are so grateful to have you in our lives.

P.S. This is going to sound funny, but if someone who figured out how to leave comments could leave a brief tutorial on how to do it, it would be appreciated! LOL.

God night!

Thursday, March 10, 2011

March 10, 2011: God and Prayer Revisited


Well, it has been practically summer here in SoCal this week... absolutely beautiful weather.  Picking up Ali in the afternoon with her cheeks flushed from warm sun and a day's worth of fun... an exquisite moment of life.  Truly.  What an absolute JOY and GIFT she is.  She keeps us in wonderment as we marvel at the world through her eyes.  It is such a treat to go back in time and rediscover planet Earth through the eyes of a (almost) 5 year-old.  Anything is possible.  Imagination is infallible.  Yesterday, a week ago, a month ago... all the same... GONE.  Moved on.  Not forgotten, but not stuck.

Ever notice how we get stuck in the past as adults?  Not kids.  No time for that.  See, there isn't enough past to prove they are right or wrong about anything they face.  They just take it in stride.  Think about that.  As adults, we form "truths" about all sorts of things.  Then, when we bump into an event or circumstance that is incongruent with a particular "truth file" of ours, great dissonance occurs.  Why?   Because our truth file has had time to settle in and stick to us like a cheap band aid.  You know the type.  The type that even when you do pry it off, it leaves that "glue ring" on your arm forever?  LOL.  Yeah, THAT one.

Kids?  Nah, they don't end up with the sticky truth ring.  Not yet at least.  They just move right on, charging into life at mach 3.


I had an experience this week that I've heard of for years.  It's called "runner's high."  It's when your brain releases the same pleasure chemicals from exercising as it does from other, well, pleasurable activities.  I started strong in 2011 with the whole exercise thing, then fizzled out working out in a way that doesn't work for me (from home).  Now that I am back in the gym, I'm back in gear, and it is GREAT.  This week, I returned to my pre-Bella cardio program at the level of intensity that I used to max out at.  That was a huge victory, as I had dropped below that capacity for close to 2 years.  It's great to be back, but what was unique was the specific feeling of elation in my brain that I felt Tuesday morning and today after I finished my run.  It was amazing.  I was so peaceful, happy, calm.  Wow, it was awesome.

The treadmill I run on has a flat screen TV stuck right in my face, but I turn it off.  Instead, I wear a soccer jersey and look at the logo on my chest, then up at my sweaty mug, and see a soccer player.  I used to be one, so I visualize myself in that kind of cardio shape again.  What a great feeling.  Also, at the top of each interval (After a 5 minute walk to the gym, 4 cycles of the sun salutation, and 1 minute at 5 mph, I do four intervals: 1 minute at 6 mph, 1 min. at 7, 1 min at 8, 1 min at 9 mph x 4 times with 1 min at 10 mph at the end for a peak push), I say to myself in a cadence with my stride, "3 million dollars by May twenty first!" over and over again for one minute into the monitor-turned-mirror.

On Tuesday, during my final 2 minutes (9 and 10 mph), I saw this guy... wasn't exactly me because the image was bouncing all over the place since it's mounted on the treadmill... running through time and space.  Laser focused on a vision, he was charging through time moving closer and closer to this end-point.  Like Terminator 2, he was undauntable in his stare and his stride.  He would not stop.  His confidence grew as life threw at him more and more obstacles (this was the experience when the treadmill went from 9 to 10 mph specifically).

How did it end?  Life ran out of obstacles before he ran out of energy.

And then, that same guy showed up in my monitor this morning, and accomplished the same feat using about 80% of the energy he used on Tuesday.

My body is the only place my soul can live while here on earth.  I feel like I am cleaning house, giving it a makeover, upgrading, cleansing, tightening loose screws, dusting off mantles internally.  A clean house makes my wife happy, and a clean body is rapidly making my soul and my mind happy.  Getting those two on the same wavelength... I'll take THAT victory ANY day.



Here it is.  Thanks to two conversations I had with my mom and my friend Grant, I got it back for me this week.  Thank you to the both of you.  :-)

Goals aren't for what you make out of them once complete, they are for who you become along the way.

So it is with prayer.

For me, prayer isn't about what happens as a result, it is about who it allows me to become along the way.  It was prayer that allowed me to be strong, clear, and free from fear when I walked into the hospital day after day after day after day.  I handed God my fear every morning and let him hold it for me while I was in the hospital, because I promised myself I would not bring fear into Bella's room.

I can honestly say that I never did.

I remember fear knocking at the door of my heart during rounds on two occasions.  It is the worst, coldest feeling in the world.  If you ever saw, "The Matrix: Reloaded," Agent Smith stabs Neo with his hand, and slowly attempts to turn Neo into a copy of Agent Smith.  For me, Agent Smith is a metaphor for fear.  When it grips your heart, it emanates a cold, black tar of impossibility through your whole body.  I shut the door on that feeling within seconds, only because it wanted to spread so quickly, that if I permitted it to linger for but a moment, it would have had me.

It wasn't me that made any of that possible, and it wasn't even God per se.  It was my prayer to him that facilitated that morning release from fear.

Prayer is the bridge between God and me.  It is the lifeline I throw to him, not the other way around.

Please don't misunderstand that.  What  I mean is that I have to pray to connect... God is ALWAYS there ready to catch the line.  I just have to throw it to him.  Maybe the visual works for you in the opposite manner.  Maybe God is perched with life line in hand, winding it up like a lasso overhead, just waiting for you to say, "Throw it!"  He's just waiting for your cue.

Through these past months, I've known that God has been there the whole time.  I've been comforted by my faith that whenever I am ready to pray again, he is there ready to listen.

Well, I am ready to pray again.

God night.

Monday, March 7, 2011

March 6: Lacquer Thinner and other wonderful aromas...



The house smells of lacquer thinner.  Think nail polish times A HUNDRED.  I finished stripping the bathroom cabinets today.  Upon advice from a friend, I took lacquer thinner to the cabinets with a really fine steel wool to help draw out the last of the varnish.  I sent Ali and momma out for the day so they wouldn't have to deal with the fumes, but oh, man, the thinner odor remains!  Icccch.  Oh, and it's now raining, so I can't open up all the windows and doors.  Good times.

The most fun of the day was the chemical burns from the varnish remover.  It soaked through my sleeve at one point, got inside my glove at another, and got on my let leg twice.  Oh and my chin.  You can't see it, but you sure can feel it!  Out of nowhere, this sudden burning begins, and you know you gotta get some water to it right away!  Good times.  As you can tell, I am not in the running for the world's handiest guy.  I have always maintained that I am as handy as I need to be, but that's it.  It's all good; I listened to two books on tape between yesterday and today.  That's good for my brain at least.

I had on one of those great industrial strength gas masks for most of the day, and at one point, as I was walking downstairs, I could smell this wonderful, sweet bbq chicken smell, which was weird since I was the only one home.  I looked and saw the patio door was open, so I figured my neighbor Nick must have been BBQ'in' up something good.  Except, next time I came down, and the door was closed, I smelled it again.  Mind you, this was a pleasant departure from the chemicals I huffed all day, with or without a mask. Then, it hit me.  The crock pot was out on the counter.  Was it quietly cooking away the whole time?  Sure enough, one of Ang's yummy chicken, black bean and salsa concoctions was simmering away.  Mmmm... hearty dinner after a hearty day!

Tomorrow, I work at a group home for abused teens doing music therapy with them, and it will be our third out of 6 weeks together.  I'll tell you, spending the afternoon and evening there the past two Mondays has reminded me of one thing; I was blessed as a child and a teen to have a loving family that never beat or abused me.  I am grateful for the time I get to spend with them, but it is such a drop in the bucket.  I am reminded how special the activities were for Ali at the Ronald McDonald House, even when they were just one day a week.  The fact was that even though the volunteers were only there for one day a week, different volunteers came every day, and that was so gratefully received.  Thinking of it that way, it's better that these kids get some fun and release through the power of group music making than none at all.  I hope they look forward to it.  Every little bit helps, right?

God night.

MARCH 7, 2001:  WHOOPS!

Well, I wrote the above last night, then tried to load a video using blogger's video plugin instead of a picture, but lo and behold, it not only didn't work, but the post didn't post!  I logged on tonight and saw Saturday night's post and was baffled!  Oh well.  Sorry about that!  Last night was to be the last nightly post before moving to this twice a week format and you got jipped!  I am hoping I can get the blogger plugin to work as I have a BUNCH of cute little short videos that I'd rather just post here than on youtube of Bella.  Man, I miss that little fire cracker!

Today was l-o-n-g.  In the office before 7 am, and still in the office at 10:45pm.  Had one lousy session, one okay session, and one GREAT session at the group home today.  That last session just makes me want to come back for more.  Teens I work with in behavioral hospitals and group homes are funny; they can be so great, and such a nightmare... and they can flip on a dime from one to the other.  They are so volatile.  I think that is the best word to describe them.  Sometimes I really lose my focus or cool inside and I have to SNAP right back to present, grounded, and connected, otherwise the group just falls apart.  It certainly takes a lot of mental energy to generate the group for 60 minutes with 6-12 teens!

Ali and Angelique baked a pumpkin pie yesterday, and today, they baked a ceramic mini tea set Ali painted from Cost Plus World Market.  What a fun store!  Ali was so proud to show me what she had painted today.  I just love when she shows off her art.  She is sooooooo passionate about art!  It is just a delight to watch.  My sister Tracy was an Art History major, and an artist who used to really do some really cool watercolors.  My dad seemed to have a knack for pencil sketching, like a comic strip style... and I loved drawing with pencil.  I never really dug color; I LOVED pencil.  Well, it's in our blood because Ali LOVES to paint or draw.  Back in her early years as an artist, when asked how daycare was that day, Ali would only answer in terms of whether they painted that day or not....

"Not paint"  were the first and only two words she would utter about the day from her back seat throne.

Well, that wasn't the case today.  Today, she painted.  And the beam she glowed was all the indication I needed. Oh yeah, the tea set is cute, too.... see above.

Remind me to tell you about the AMAZING conversation I had with my mom today about prayer... for Thursday!  :)  I need sleep!

God night.

Saturday, March 5, 2011

March 4: Moving On...

Can you see the little translucent heels to finish the ensemble off?  I'm in trouble...


Thanks again to all those who have sent us good wishes for the rest of Angelique's pregnancy!  It means a lot to us, as this is obviously an exciting, but also extremely nervous time for us.  We have really grown close to you all through this incredibly intense period of our life.  Again, all I can say is that we were not trying for this, and as one person put, the fact that we were even capable of conceiving under the stress of grief (this was back in November mind you) is beyond a long shot.

Regarding the increase of negativity in the comments despite me asking people to please respect our request, I am blown away.  I shouldn't be surprised I guess.  There are people who seek to drag you down no matter what level you try to rise to.  Us?  We're tryin' to rise above the death of our daughter.  We're tryin' to raise awareness of EB.  We are tryin' to fund the work at the U of M so that 10 years from now, no child ever has to die from this disease again.  I am tryin' to write about our journey as openly as possible so that others may find some insights or inspiration in what we do with what we're given.  This is what we are up to.  Anything else is your story, not ours.  So, thank you to for those sharing about the different comment requirements.  No more anonymous commenters.

To the person asking about the amnio, great question.  The reason for the amnio is so that if the baby does have EB, we can plan the C-section to be safer than it was for Bella.  They pulled the skin off her armpits, hip flexors, and left buttock because the delivery team was wearing dry gloves.  We'll also be able to have the EB NICU nurse scheduled, we'll be able to pre-order wound care supplies... we'll be ready.  If the baby doesn't have EB, we'll be able to breathe easy.  Either way, we will best prepared for the baby. Also, between the CVS and the Amnio, the amnio was recommended as a less invasive, less chance for complication from the procedure.  I think if someone was going to abort based on the results, an earlier CVS is a better choice, but if someone isn't, the amnio is safer.

Daddy's fabulous socks of the day!  Rock on!  I know, I know, very sexy.

Another good question asked was if we would go through with the stem cell transplant again.  Good question.  We wouldn't go through with the same procedure Bella went through, meaning, we would wait till he/she was a little older (under 2 has NOT been an ideal age at all to this point).  Also, I know that Dr. Tolar has proposed a new chemo regimen in light of the complications to Daylon, Bella, and Elle.  I pledged to raise this money for the Drs. about 7 weeks before we found Ang was pregnant, but it makes it that much more personal if we do have a child with EB, because the sooner Dr. Tolar has the funds, the sooner he can move forward with the next THREE versions of the treatment he has already conceived.  He is literally just waiting on the funds to put these next versions to the test in the lab.  First, they need to be tested in the lab, and if successful, can then be administered in the hospital.  These next steps, PARTICULARLY steps 2 and 3 will EXPONENTIALLY reduce the level of danger to the child.

Lucy with Ali's skirt and Bella's Arsenal Bear... looking less than thrilled by Ali's staging...

I can't remember if I shared this or not, but in Bella's 100 day biopsies, they not only biopsied her skin, but also her mouth and esophagus.  They found anywhere from 3-24% of the skin to be Ali's cells.  That means in certain parts of her body, 1 in 4 skin cells were already Ali's.  This is so promising and yet so heart breaking, because it shows that the transplant worked.  It's not whether the procedure works or not, it's whether the child can evade the dangers of the chemo.  In the newer transplant models Dr. Tolar has proposed, the amount of chemo necessary is sooo much less.  I look forward to that day for ANY family.

In the meantime, we do as much as we possibly can.  We love each other, we love on Ali, and we love our new baby in the belly.  Like me or hate me, I have a big mouth... but if you want the world to turn its collective attention on a little-known but breakthrough stem cell procedure in Minnesota (and NO - NOT at the Mayo - you wouldn't believe how often we get that) you gotta make some noise.  I've known all along that there is one thing that I will have to learn to deal with which is other people's opinion and criticism of how I go about helping fund the safe treatment of kids with this disease.  I still have much to learn, and every pot shot taken at me still hurts, but I'm not gonna stop being me.  All I know is that when I die, and I meet Bella again, I'll be able to say I never gave up.

God night.

Thursday, March 3, 2011

March 3: Call in the fire trucks!


Okay, okay, everyone, thank you all for your participation in today's melee.  Now let's all (me too) take a nice, deep breath.

Here's the thing:  I have requested on two separate occasions in the not-too-distant past that comments on this page remain positive.  If you are reading this blog, thank you for being here.  However, I must ask a third time, please censor yourself if you find yourself writing a comment that is not positive.  I pour my heart and soul into this blog.  I have shared the most naked and vulnerable thoughts, feelings and fear I have here with you.  I provide TREMENDOUS value and inspiration on this page for free and have done this just about every day since June.  What can you do in return in the spirit of reciprocity?  Keep your comments positive, or keep them to yourself.  If you don't want to do that, or don't feel like you can do that, please do not read my blog anymore.  Find another blog to follow, and God bless.  Sorry, it's my blog and I'm pulling rank ;-)

Fair enough?

Moving on...

Today was my first of the two-day internet boot camp down in San Diego.  I began looking into doing business through the internet when Bella was born as I couldn't work in a hospital and take care of her at the same time.  Since then, I have dipped my toes into the internet marketplace without much monetary success, but have learned a ton, and developed an amazingly loyal community here, thanks mostly to Bella.  Without Bella, I wouldn't have started blogging.  Without Bella, I wouldn't have written a book, raised money, donated books to every new EB family in the US for the next 4 years, raised awareness for EB, met a whole new family of friends in Minnesota, and across THE WORLD.  It's all because of Bella.  Bella was good for the planet, wasn't she?  Exactly as she was.  I'll never forget doing bandage changes on her in May, shortly before leaving for MN.  They were soooooo peaceful.  She would lie on the bed, and watch Baby Einstein as we would 'put her back together' in her fresh bandages.  Every once in a while, she would pull her gaze away from the TV and just smile at me.  That smile said to me, "Ah, yessss.... THIS is why I picked YOU.  I knew you would take this good care of me."

My personal belief is that the soul chooses its own journey, and chooses the parents it wants to come through, not the other way around.  The illusion of control is so thick in our society.  Folks, we are not in control.  If we were, nothing bad would ever happen.  To anyone.

How many married couples do you know that have had a "change of life baby" later on in their marriage?  How many have tried everything under the sun and just can't get pregnant?  How many have gotten pregnant even on 'birth control?'  What if we did IVF and the baby ended up with Down Syndrome, or a million other childhood diseases or maladies that fill children's hospitals around the world... every. single. day?  Who would we blame then?

All I can say is that this baby chose us, just like Bella did.  In fact more so than even Bella did, because, candidly, at least with Bella we were specifically trying to get pregnant.  It's not like in November we said, "Hey alright!  Let's through caution to the wind and pump out another one!"  The conversation was quite the opposite.  We weren't ready.  But we are still pregnant.  Abortion doesn't fit within our view of the world and of life, so here we are.  Folks, I've said it before, and I'll say it again, it's not the events of life that determine our outcome, it's our response.  There are no if-then clauses about life.  We make them all up ourselves.  I fully take responsibility that I made up the if-then clause that if someone says something crass the day I post the SCARIEST and most EXCITING news of my life, I'm gonna deal on them.  I did that of my own volition.

And trust, us, we know exactly what the possibilities facing us are.  We don't need to be reminded.

However, we walk the walk, and have since day one.  SO, the event is here, NOW WHAT???  How are we going to be in the face of whatever it is?

 I wonder, is there anyone from the U of M hospital staff reading this that was in the room the day Bella died?  How was I being in the face of that?  How was I being as I harmonized to Bella's song, as we unhooked her from all her machines?  How was I while I watched the team administer CPR for TEN MINUTES?  How was Angelique as she delivered her eulogy not once, but twice?  What was she like to meet at one of our many round-the-country blog gatherings?  How was my faith when I wrote the the post:  October 11 Part II?  How has Ali been throughout this grief journey?

All of these things have been a choice, despite the events taking place.  It's actually all we have.  We have our vision, but life does what life does... ah, but we also have our response.  We always get the final word in.  It's THAT final word that ALWAYS and without escape determines the final outcome.

That's it.  We cannot control the events of life, but we can control how we respond.  Now, it's time for me to take a little of my own medicine here and say that I do not practice this perfectly, but I do practice it powerfully.  Yup, I get triggered and reactive also, yesterday was evidence enough of that.  I'm no saint, just a guy doing my best to be the best I can be.  My gratitude and heartfelt thanks goes out to all.

God night.

Wednesday, March 2, 2011

March 2: Thank you


Wow!  I have tears in my eyes.  Thank you all for coming out and showing your support.  Thank (almost) all of you for choosing to to share your joy in response to this news.  Yes, of course we are a bit nervous as to how this will turn out, but you all showed true class in what you chose to write.  You truly uplifted my own spirits about this child.  We have been very nervous sharing this news with family and close friends because, well, it's a little scary for everyone.  Some have taken it well, some have taken it a little less than well.

Oh, and to "anonymous" who wrote about preparing Ali...:  Go away.  Go find some class and some tact.  Then, come back and apologize.  This was not your first obtuse comment.  Your crass style is quite obvious.  We don't need it.  Get a clue from the 76 other comments as to appropriate social behavior.  Google it if you have to.  (Thank you Sara for your comment to said offender.  YOU ROCK)  It's called a FILTER.  Just because you THINK it, doesn't mean you WRITE it.  Somebody needed to fill you in on this, and I'm glad it was me.  Because when I deal with someone, I don't leave anyone within earshot wondering what I'm trying to say.  Ask the treatment team in MN.  My friends once made a custom shirt for me that says LOUDASS across the front, because I AM the guy who WILL say the thing everyone else is thinking but doesn't want to.  Yeah, yeah, rise above... nope.  Not this time.  DONE.

Ah, I feel much better.  ;-)

Back to the story...

Angelique said it all within a minute or two after the EPT read YES+.  She laid back on our bed, looked at the ceiling and said, "God has a plan."


He always has.

This is where the faith muscle gets its workout again.  The real rub to all this is that God has a plan, and in every event that is laid before us, we have the opportunity to look for Him and His Grand, Elegant Plan in that event.  If everything is made up of God, then every event is also.  We are just his children.  How could we understand everything like He does?  Ali doesn't understand everything mommy and daddy do... but she trusts us.  As do we Him.

EB or no EB, not up to us.  A soul willing to give others the opportunity for generosity, love, nurture, compassion, selflessness... THAT is a generous soul!  A soul willing to experience EB is a wise old soul.  AND... it's one thing to have a child with EB without knowing, and it's another thing to roll the dice again, and commit to that child no matter what the outcome.  In a world where the Trisha Knuths and the Vanessa Delgados and the Missy Grays of the world seek out and adopt (forgive me for others I didn't name) children with EB, who are we to fear it?  These women and their spouses fill me with so much inspiration that, while in the deepest place in my heart I want an EB free child, I know of few parents as skilled and powerful as Ang and I to give the best care possible to a child with EB.

What you all reminded me of is how blessed we are, but also how blessed this child is to come through us.  That was so incredibly kind and generous of you to say.  Thank you.  You gave me back my confidence.  Today, you breathed new life into me.  Yesterday, I was weak in the face of this news.  Today, I AM STRONG.  Thanks to YOU!

One other piece of news.  I am no longer going to blog daily.  It's taking away from me working on editing the MN journey into a second book, and from writing privately the material for my upcoming record.  So, I am going to pull back on the reigns in March to twice a week, then in April, it will be weekly.  My promise is that it will stay consistent.  It also means you can still come and comment and check in on each other on a daily basis through the comment thread.  This is a community, and we are used to being here together.  I am going to blog on this site on Monday nights and Thursday nights starting next week.  (You can still get shorter chunks from me on my success blog; I'll be writing there every Sunday / Wednesday night at least...)  So, I'm still around... it's just that I need to write a little more just to myself for a while.  However, I predict when this little munchkin hits the ground running in late August, I won't be able to resist posting daily for a while!

You guys ROCK.

God night.

Did I cook it with my famous "Bella Mind Melt?"

Tuesday, March 1, 2011

March 1, 2011: Yup.


Due Date:  August 26, 2011.  

Amnio to find out if EB or not EB:  March 15, 2011

Results of amnio:  April 2011

EPT result:  December 21, 2010.

That means it will be over 3 months for us without knowing EB or no EB.

1 in 4 chance the baby will have EB.

Now you see why we are so passionate about funding this cure?

God night.