Tuesday, July 5, 2011

July 5, 2011: I Saw a Giant Head Today...


There I was, perched in my usual seat to the side of the examining table... Ali in my lap, Dr. Valle chatting with Angelique about how the pregnancy is progressing... the usual stuff.  Just then, I look at Ang's belly as the good doctor is attempting to get a good heart beat, and HOLY MOSES, WHAT IS THAT???!!!!

Julian practically climbed out of Ang's belly button head first.

It was the funniest and weirdest moment.  Somehow, the way she was laying with the way he was laying, his head just STUCK STRAIGHT UP practically out of her belly.  We were all taking dibbs if it was a head, a butt, whatever, but Dr. Valle finally settled on a head.  I thought he was about to break into song and dance and just hop on out.  Remember, Ang is 5'0", so there simply isn't a lot of room in the inn!  7 more weeks.  Poor girl.  Thank God men don't carry the offspring.  The race would be long extinct.

Aside from being unable to get comfortable in just about any position, Ang is soldiering on as best she can.  She has absolutely the best attitude in the world.  She has so many "reasons" to be crabby, annoyed, snappy, and yet she manages her emotional state so well, it is inspiring to be around.  I have always said that being around Ang elevates my game in life.  It is still true to this day.  I think she is the stronger, more balanced of the two of us by far, and I am light years better for all the years we've spent by each other's side.

Happy belated 4th to everyone!  We avoided the beaches yesterday and visited a cute little petting zoo in historic San Juan Capistrano during the day yesterday, and hung out with our friends the Thomases last night for some fun stay-at-home fireworks!  Jim worked the fireworks booth this year for little league and saw fit to "invest" in a rather large display of fun in a box. "It's for the KIDS!" was the battle cry as we all watched the money-turned moments of light and noise burn before us.  Somehow, knowing that the money went to the little league eased the pain.  They live in Costa Mesa, CA, where fireworks are legal to buy and legal to shoot off.  So, it GOES OFF in their neighborhood!  I saw fireworks exploding overhead that looked like they were smuggled off the backlot of Disneyland!  No, really.  Clearly, there are legal fireworks, and there are illegal fireworks, and while we enjoyed the legal ones, EVERYONE enjoyed the illegal ones as they towered over the entire neighborhood!

Well, one more short week, and then we settle in to "the home stretch" from now till August 22 when Julian will show his head for real!  No trips, no vacations, just a straight shot in from here.  We have been on the move with so much for so long, that 7 weeks in a row of no one traveling seems unbelievable.  When I saw Jim the other day, he asked me, "So, where and when is your next jaunt?"  I thought about it, and replied, "I guess I am prone to enough jaunts that one would assume there is another one on the horizon, huh?" to which he nodded affirmatively.  I laughed.  I don't think of myself as someone who travels a lot, but all I would have to do is look at my calendar and realize I travel "often."  LOL.  Next up?  D.C. in September to testify before the NIH on stem cell research funding, then Phoenix the following week for Joe Polish and Dean Jackson's big event.  I have been given hall passes for these as they have been in the works since January, but I know when they arrive, and I have to walk out the door, there will be a little pain in the steps.

One of our readers asked what it was that I regretted, and thank you for putting it in such a sensitive way.  I don't mind sharing.  I think the regret is more of an over-arching feeling over losing Bella rather than from a specific thing.  I think whenever something ends up really going "not the way I planned it" (read: WRONG... LOL - my private coaching clients are laughing reading this), I think something "should" have been done that wasn't or "Shouldn't" have been done that was.  I can't help - as I imagine the docs must REALLY grapple with - wondering what we "should" have done different.

No one wanted to lose Bella to transplant.  Though complications are always nearby, it just didn't seem that it would be in her case.  She was healthy as an ox... so much so that I know there are many who questioned why we went through transplant in the first place.  Understandable!  Well, knowing that RDEB is a progressive, systemic, fatal childhood disease, and knowing that there are so many ways EB kills kids that we don't even understand, it was PRECISELY that she was so healthy that we took the chance.  We figured, as did the docs, that her body could handle the chemo.  In fact, her labs were so good, Dr. Wagner remarked about them only because it was the opposite of what he was used to dealing with going into transplant.

There was just such a sense that Bella had a really good shot of preempting the dilitations, the mittening of the digits, the awful sentence of painful baths and bandages by having the transplant so early, coupled with the thought that BMT works best for kids under 2.............

.............. who don't have EB..................

............... but then you just cry.

You cry from the pain of the learning experience that it is just the opposite for EB kids.  You cry as you watch 3 of them in a row (one being your own child) take up residence in the PICU, and only one ever leaves alive.  You cry because you are left wondering if you messed up a perfectly "mild" case of EB, and you think in your head, "Maybe it wouldn't have progressed, maybe physical therapy would have gotten her to finally walk, maybe, maybe, maybe...."

Now, having just said allllll that, these are the things we all struggle with as parents every day, just turned up ten times louder.  There is no crystal ball, and we are not in control.  Western medicine has all but erased infant mortality during or after childbirth in the last 50 years.  We have vaccines, antibiotics, cesarean sections, open-heart surgery on preemies and neonates, RADICALLY reduced mortality from pediatric cancers... we have it soooooooo good here in the now.  We are very blessed. However, because of all this, when something DOES go wrong, it can seem stunning, like out of nowhere.  Yet, I am just one of a million dads who have outlived his child, and that doesn't make the pain any less real or valid, but it reminds me I am not special or unique.  Really, I am just very blessed at the beginning and end of it all.

Blessed that I got to be the husband to Angelique.
Blessed that I got to be the daddy to Ali.
Blessed that I got to be the daddy to Bella.
Blessed that I got to be the daddy to Julian.

Those are my highest blessings.  I am lucky to have more, but none worthy of the above company.

That's my curriculum vitae.

God night.


  1. Tim, your family was and is still truely blessed. You did what you all thought was best for Bella at that time. Don't second guess yourself. You guys did what was right. Even if you had decided against the transplant, things could have srill went the wrong way. This was God's plan. Bella touched so many people, and changed so many lives. I will never forget her. I really think that her work here is still unfinished.
    Continue to celebrate her life. Make sure her baby brother knows how brave and strong she was. Whenever I see a butterfly, it reminds me of Bella.
    Love & Prayers,
    Carla Spradlin,
    Taylors, SC

  2. I agree with Carla...
    And there Are so many maybes in life, you just never know. An infection could've caused her "mild" case to become critical overnight...

    The beginning of this post was fantastic, by the way. Everyone close to a pregnancy can relate! Do they think Julian is big, too? I remember, more with gigantic baby Jack, I could feel and recognize elbows, and feet protruding from my belly. We short(er) girls just don't have the space!

  3. Hi! Thanks for the answer. I agree with Carla and couldn't say it better ....

    Bella was precious and you shared her with many Her memory will live on.

    I was thinking it is a bit strange that through this blog I have known your family in a way for almost a year.

    Enjoy your 7 weeks preparing for Baby # 3!


  4. Love, love, love the pic of Bella. That beautiful smile (-:

    peace and love,


  5. This post makes my heart smile. And put tears in my eyes. That picture is amazing.

    Love you all!

  6. I have been reading your blog for almost a year now. This post truly touched me. I am a parent of two young children, I cannot even imagine having to make the decisions that you and Ang have to endure making. You guys are AWESOME parents! You were blessed with Bella, but she was also blessed with parents who loved her dearly and made difficult choices with only her in mind. There is not a day that goes by that I do not think about Bella, she has truly impacted my life. God Bless!