Sunday, August 4, 2013

Ali has surgery and Dr. Tolar blows our minds...


Wow.  So much to share.  Here we go.

Trip to Nashville was great.  Connected with the Hemophilia community for a second conference for those who couldn't make the trek to Seattle.  Totally different vibe.  Thought I did way better with the kids this time around; the Seattle trip helped me 'dial in' what each age level could handle musically and didactically.  While my talk did inspire several people to come up and share how much it resonated with them, I also got some feedback that some teens were turned off by it.  That's okay, because I can honestly say that it wasn't tailored in any way towards them, so that makes sense.

The best comment I got was from a man in his late fifties/early sixties I'm guessing.  He shared with me later that evening that when he walked out of the room at the end of my keynote, he looked at his son, and said, "Son, I think I just had a spiritual experience!"

The son replied, "That's because you just went to church, dad."

I would say that if you asked me if I'm 'preaching' at all in my keynote about overcoming adversity, I'd say I'm planting seeds, but I'm definitely not 'in your face' that you must accept the Lord to be able to overcome your struggles.  That's DEFINITELY not my style.  So, for the father and son (early twenties) to have that conversation afterward really moved me.

What does it mean to have a spiritual experience?

That's not an everyday term... like, "I had a good time..."

It means to me that he connected with something greater than himself.  I totally own that this is my interpretation of a spiritual experience, but he didn't say he had a 'religious experience.'  Notice the difference?  That is okay with me, in fact, I like the idea of it being a spiritual experience, because that is open-ended and intimate, and gives space for the sacred to arise in whatever way is best for the person.  At least that's my take.  I'm not looking to convert anyone to Christianity when I speak, but I hope to create that faith is a gift you give yourself... and I'm not concerned with what you have faith in, it's having faith at all that is the game changer!

On the home front, Ali had minor surgery this past Friday.  Turns out she was born with a inguinal hernia, and as she has grown, so has the hernia.  When we went for her annual physical this spring, the doc first noticed it when we told her Ali was having intermittent pain and swelling 'down there.'  So, scheduling around ours and the surgeon's summer vacations took us all the way out to this past Friday!

Ali was admittedly really anxious because she was afraid of getting poked for her IV insertion.  She had a B-A-D experience with this in Minn. if any of you long time readers recall.  So, for a couple of weeks prior, Ang 'practiced' the procedure with Ali, and then I made a custom music playlist (shock) of songs she specifically picked, and we listened to them and sang along with them for a few days before the surgery.  I also downloaded a Mickey Mouse Paint and Play app for my iPad that she told me she wanted... but I didn't tell her until I needed it to deliver a total surprise redirection that morning!  I also drove her down to the surgery center the day before with Julian, and we all walked in and I took her through the steps so there would be as little 'unknown' as possible that morning.

We kept her up late the night before so that when it was time to go to bed, she collapsed before she could even THINK about the morning!  When the morning came, she was scared, but as soon as we started listening to her tunes and singing them out, she moved right out of the fear and into the music.

It's funny.  I've done this with countless patients, but I was worried about whether it would work with Ali, because, well, she sees me as 'dad' not an authority on music for therapy, but it wasn't me doing the work, it was the music.  It's worked with Ang during delivery (x3), for Bella countless times, and for Julian, so why not for Ali, right?

As we were driving to the surgical center signing "Gangnam Style" at full volume in the car (me and Ali, that is), Ang commented, "Wow, you must have had A LOT of coffee this morning!" but that wasn't it.  I was generating the energy in the moment to keep Ali present, and having just accessed that 'zone' in Seattle and Nashville, it was pretty easy.  However, as I was singing, when we got off the freeway and approached our old children's hospital, which is nearby the surgical center, I started to cry under the music and behind my sunglasses.  Two things hit me.  One was a flashback of revving up the family energy for Bella time and time again, but the second was a feeling that I was being a good dad, doing what my daughter needed me to do to best care for her.  I don't know how much I've shared on here about the negative self talk I deal with internally.  Most of the time, I am working hard to be nice to myself, but in that moment, even the negative voice in me conceded that I was doing a good deed.

Once we got there, we put on Ali's headphones and she used my iPod to keep listening.  Then, we got in, and the amazing irony was that once we got into our surgical bay, they told me that they were going to give Ali gas and knock her out before they started her IV... the whole source of her anxiety!  Still, better to be over-prepared than under-prepared, right?

Ali has been resting at home since, and she's doing great.  She's been up and on her feet today without any pain.  She'll stay home from camp with me for two more days before Wednesday when she'll return to 'light duty' at camp.  She's working on learning how to use a sewing machine at camp, so that'll be a perfect, non-ambulatory activity.

Moving on...

Back in 2011, when we sat down with Dr. Tolar to ask what he needed financially and what he saw on the horizon for EB research, he outlined a totally separate protocol from the bone marrow transplant procedure Bella died from.  At the time, it was just a concept they hadn't tested yet, and they lacked the funding to test it in the lab.  It involved taking the defective gene out of a cell of an EB patient, replacing the gene, and giving it back to the patient without the dangerous side effects of BMT.  I certainly understood the idea, but only at a general high-altitude.  The details went right on by!  It seemed like 'the future.'

Well, seems like the future has arrived.

CLICK HERE to read why.

It's been about 2 and a half years since that conversation with Dr. Tolar, and the EB community has pumped over a million dollars into EB research at the University of Minnesota in that short time.  Ang and I really haven't had a chance to let it all sink in yet, but upon writing this, it feels pretty good to be a small part in something so amazing.

I fancy myself an idea guy, but this is a prime example of how you don't need to have the bright idea to be a part of making it a reality.  An elegant idea needs lots of heads, hands, and hearts to bring it into existence.  It doesn't really matter which role you play, when you know you've had a hand in it, it feels just as sweet.  Cheers to DebRA, EBMRF, JGSF, and EVERY SINGLE ONE OF YOU that has contributed to Dr. Tolar's research.  It takes a village.  It takes a village.

God night.


  1. You and your family were a HUGE, HUGE part of this new medical discovery/direction!! In a way, you offered up the greatest "sacrifice" of all...the life of your child. While that was obviously not done intentionally, Bella is as big a part of this thing as Dr. Tolar and the others invloved.
    The MIRACLE that is going on now in Charlies little body is a direct result of the contributions of Bella, Tripp, Quinn, Chloe, Elle and all of the other EB angels. Your daughter was directly involved in a miracle...thats just incredible! Most of us won't leave so much as a scratch on humanity when we leave this Earth, but these kids, man, they have shattered it!!
    So amazing to be able to watch this unfold!!
    Have a great week im and family!
    PS - Glad Ali got through that episode no worse for the wear :o)

    Kelley from MO

  2. Wow! Just realized that Julian has been wearing the same red shirt in the last 3 blog posts. Guess I need to change up his weekend wardrobe a little.