Thursday, May 27, 2010

Happy Birthday, Bella!

What? It's my birthday today?

Well gang, here we are!

Exactly one year ago today, our lives were forever blessed by Bella's birth. We didn't know it that first day, for sure, but WOW how we have been blessed this past year as a result of her choosing us and choosing EB.

Here's the paradigm we adopted early on to empower us through this journey:

We realized early on what an old soul Bella is; after all, can you imagine how many lives you'd have to have lead before thinking, "Hmmm, that Epidermolysis Bullosa thing... now THAT is interesting. Hey Tim, next time round, wanna play my dad, and Ang, wanna play mom, and Ali, wanna be my big sister? I think that might be really fun! Let's try it and see what it's like..." Somewhere, our souls all agreed and set out to experience EB together. We waved the collective amnesia pen and forgot everything we planned so it would all seem "real," and headed off to have the human experience.

Fast forward to the present moment 1 year ago, and MAN, it seemed REAL! However, there is an equation in the universe for understanding and eventually mastering the game. Here it is:

E + R = O

Events PLUS (your) Response equals (the) Outcome

What this equation states is that 50% of how any situation ends up is in your hands. It's not what happens that really matters, it's what you do with what happens... you see THAT'S the key... PARTICULARLY when the "E" is "unplanned."

It was only a few days in to Bella's life with EB (E) that we realized that we had a say (R) in the way the future transpired (O). We started a blog. We wrote a book. We advocated for an EB policy at our local children's hospital, which was recently implemented. Our Physical Therapist in CHOC went and became a Certified Wound care Specialist. Our NICU nurse went on to receive a grant from CHOC to write a research poster on EB best practices. We lectured as patient of the year at a national sales and marketing conference for one of the major wound care dressing providers for EB. We raised money to provide every family in the U.S. for the next 4 years who has a baby with EB a copy of Bella's book, so they may learn from our journey that 1) they are not alone, and 2) with a little faith, they too can completely transform this experience into a WIN. We donated to the one charity funding the stem cell transplant Bella is about to undergo. Bella will be patient #11 in the first clinical trial of its kind for EB, inevitably becoming part of the link leading to a cure for EB. We CHOSE to see her disease as a blessing. We made up our own conclusions that would support us in putting one foot in front of another, one day at a time.

Well, 365 of those days have passed, one at a time, and man, what a ride it's been. All the while, Bella just gets cuter and cuter. She has touched the lives of so many already, and she still hasn't even spoken her first word, or taken her first step. We are filled with gratitude for each and every day of it. We wouldn't have it any other way. After all, serenity doesn't come from having what you want, it comes from wanting what you have.

Biggest gift from all this? Knowing that tomorrow doesn't necessarily follow today. We know kids with EB who didn't reach today. We know kids without EB who didn't reach today. I used to take for granted that tomorrow would follow today. 9/11 was a major lesson in dispelling that assumption for me. Bella was the next. What a gift that is! For now, EVERY DAY becomes a GIFT. That IS why they call it the Present. I get it now. It's no longer a cheesy cliche in a chain email forwarded on over and over. It is a quintessential truth people are (literally) dying to teach the rest of us so we don't waste the days we ARE given.

Whatever you do, don't waste another day. Do IT. Whatever IT is. Start DOING it TODAY. It may be the only day you get.

I know I'm going pretty deep and might sound a little preachy today, but after the year we've experienced, on THIS day of achievement, I'm not going to waste YOUR time with where I drove the minivan with the girls today (okay okay, California Adventure then the Dr.'s office for Bella's 1 year check-up).

See? That would have only taken one line! As if I could ever talk about ANYTHING in only one line. HA! :)

We look forward to celebrating on Saturday Bella's Birthday with our "3 F's:" Friends, Family, and Faith community. Thank you each and every one of you who is reading these words. Your attention, intention, prayers, thoughts, words, food, money, letters, emails, cards, calls, visits, etc. have all impacted this past year in such a profound and positive way. We are blessed by your presence in our lives.



  1. we should meet up at Disney sometime...we have passes, too!
    I love the picture of Bella sitting up..she's come so far!
    And Ali?
    How did she get so big!
    Happy Birthday, Bella!

  2. Happy birthday Bella! You are an amazing girl. :)

  3. Happy Birthday Bella!
    (from Martina in the UK)

  4. Happy Belated Birthday Bella!!! You guys are truly amazing and I am so happy that you are doing so well. Will continue to check in to see how everything is going. God Bless and please take care guys. Love Leah's Nana

  5. LOVED this post. Happy (late) birthday, sweet Bella. We're not going to make it to the PCC this year either, but we can't wait to meet you in two years (if not before!). Love ya, kiddo.