Monday, May 27, 2013
Sorry it's been a while, folks. I've recently programed my computer to turn off from 9pm to 6am every day to help support my work/life boundaries, and I used to blog on Sunday nights after 9.
Right about now, 4 years ago, I was probably back in Ang's hospital room recording her reading bed time stories and positive affirmations to Bella while I played my classical guitar in the background. I took those recordings, and along with her birth song, dumped 'em onto my ipod to play in Bella's isolette over night. Bella had heard those stories and songs every night in the womb while mommy read to Ali and while I sang and played to the belly, so it was fitting for her to spend her first night hearing those sounds again, especially since she was cut off from mommy in another hospital.
Feels like eternity ago, and frankly, it feels like the story from some movie I watched. It was so over the top that it just doesn't seem like it was our actual lives.
Today, we started the day planting more flowers for Bella's butterfly garden. It was really nice watching Ang and Ali plant and pot so many little arrangements. I was on "distract Julian" duty. After that, Julian went down for a much needed nap and I took Ali to the pool.
Then, we donned our new "I Refuse EB" shirts and with cards in hand, we went to the circle in Old Towne Orange and handed out cards and spread awareness about EB. Knowing that literally hundreds of people were doing the same thing around country today in memory of Bella absolutely blew us away, and I want to say thanks again to Christie Zink for organizing this movement all on her own. She is such a powerhouse for possibility. If you haven't seen this amazing project she created to support Dr. Tolar at U of M, CLICK HERE. To know that Bella is still in people's hearts and minds, and still on her mission 3 years later helps A LOT. Thank you to all of you who were out there today, doing the good work you did. I know we had a really powerful conversation with a family today, and it just felt so good to hear about the interest and genuine concern these people had. There is hope for humanity!
Thank you to all of you who are out there every day advocating and spreading awareness for EB. To our brothers and sisters at DebRA, EBMRF, JGSF, and our new neighbors, HEAL EB, thank you.
We are all in this together.
Saturday morning, we had a breakfast date with a wonderful couple, Ryan and Heather Fullmer, who run Heal EB. They moved down here to Orange County, CA from northern California this past year, and we are all of 15 minutes apart! They have an absolute fire cracker of a son, Michael who is also Ali's age, and who has RDEB like Bella. We instantly hit it off and Michael had me cracking up for most of the time. Watching Ali sit next to him and talk and play with him like there were no bandages and no scars... we were so proud of our little girl. She (and we) just saw "Michael." Ang and I imagined that it must have been refreshing for their whole family to be around new people they hadn't met and yet who understood each other so totally and completely. We were able to talk about life with EB and life running little mom and pop non-profits with such camaraderie... it was really great. We can't wait to hang with them again. For me, my favorite moment was giving Michael gentle "high 5's", because the touch of bandaged hands with little finger tips peeking through is something my hands miss feeling. A lot.
All in all, I think it was poetic that Bella's birthday fell on Memorial Day today. She died fighting for a cure for EB... Fighting for freedom for kids born with EB to run, ride bikes, fall, eat doritos, hug, get a piggy back ride, give a piggy back ride, not get stared at in public, wrestle with their dad... the list goes on. For many with EB, some of these things are achievable, but sadly for some, it's not in the cards...
... not yet.
Wouldn't it be AWESOME if it was?
One day, there will be lots of treatment options for kids with EB, and no child will have to die from this disease again.
Such brash statements are not pollyanna. They are how transformation in the world occurs. Thanks goes to Theresa Liao, who basically threw down the gauntlet to get this research started. Thanks goes to Dr. John Wagner, who answered her call to arms. Thanks goes to Dr. Jakub Tolar, a rare hybrid Researcher/Clinician who works tirelessly at the bench AND the bedside for a cure for EB. Thanks goes to all the parents who have rolled the dice and enrolled in the clinical trial at U of M not knowing what might happen, but willing to put their child's life on the line for a cure... for all of us. Breakthroughs don't happen without both parties... the subjects, and the researchers.
Today I remember Sarah Rose Mooreland.
Today I remember Jake Liao.
Today I remember Bella.
Today I remember Elle Pop.
Today I remember EJ Carfi.
Today I remember Nicholas Moore.
Today I remember Quinn Seymour.
And for each one of these names, there are countless more who we've lost outside of this clinical trial, the numbers of which are just too many. However, I'd be remiss if I didn't personally mention our little drummer boy buddy Tripp Roth as well. I still have my "I run for..." race t-shirt that has Bella's, Tripp's, Jonah's, and Daylon's baby pics on the back. Getting to meet Tripp after Bella died was such an honor and joy. He and his amazing momma Courtney have done every bit as much to raise awareness and hope for a cure as anyone above.
We are just privileged to be part of a team of such amazing people who, when thrown into such an intense crucible like EB, reach inside, outward, and up to God, and conjure a level of courage totally unique. Unless you've personally changed the bandages on your child and watched their skin slide off in your hands as a result of you trying to keep them alive, you don't know the pain of EB. Tonight, I quietly hold a space of peace for the hearts and minds of every EB parent who has had to turn off their heart during countless bandage changes while their children scream, "I HATE YOU!" at them, so they can stay focused enough to notice if an infection is brewing in a chronic wound site.
Tonight, while Ang and I are spared that moment, we also sit with another moment stolen from us.
The moment where after dinner tonight, we get to watch Bella blow out her four candles.