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.


Tuesday, May 18, 2010

Living with Epidermolysis Bullosa: the good and the bad

Mommy providing the finishing touch to the right hand...

Hi gang!

First off, we'd like to say a big THANK YOU to ALL who have donated to the "Bella's Book for Babies' Boxes" Campaign! (You can read about it on the Featured Partner page) We have already surpassed our goal, which means that every family DebRA finds out about in the US that has a baby with EB will get a free copy of Bella's book! We donate 100 copies to start out which should last about 4 years, given who few families DebRA hears about each year (roughly 25 or so). Still, they will get the gift of knowing they are not alone, and that EVEN THIS, even Epidermolysis Bullosa, can be seen as a blessing.

Second, I have to say that this disease is simply diabolical. Bella is in Physical Therapy (PT) which is a good thing because she needs it badly. Particularly, her hips have begun to contract, which means unless we intervene enough, she won't be able to stand properly. Can I just say how much THAT prognosis bites? As if this disease wasn't scary enough; even if she survives it, it has the potential to leave her physically disabled beyond the impact of constant blisters. We are working on as much tummy time as she'll tolerate; not just to strengthen her neck and back muscles, but to stretch out her hip flexors. Today, I gave her a deep tissue massage during tummy time in PT, and she spent a good 5 minutes just lying flat on her stomach on the giant cushion from the chaise lounge chair we have in the living room. I could FEEL how constricted her hips were, and she let me work on her for what seemed like eternity. I could sense that she is uncomfortable with her his contracting, and this massage really felt good. I could feel the muscles slowly releasing over time. I of course sat there having a minor anxiety attack that I was going to leave her with giant blisters from the deep massaging, but thank GOD, no blisters occurred.

EB is a conundrum. You work on one thing to prevent another, but then run the risk of creating a third problem along the way. It's like this with just about every decision we make. Ugh. It gets tiring sometimes.

Thanks for listening; and thanks again to all who have continued to stand by us. We've relied on you every step of this journey.

P.S. Here are some pics of the girls' room after its recent makeover. I guess I can't brag about the pimped out room and not show pictures! LOL. Enjoy!

Bella's new digs... which was Ali's old crib-turned-toddler-bed-now-crib-again...

Ahhh yes. You never seen IKEA look so good...

Princesses, anyone?

Friday, May 7, 2010

Happy Mother's Day!

Happy Mother's Day to all you moms out there!

Today, we shared the morning in a beautiful park in Huntington Beach with Ang's mom, brother, his wife, her mom and their two kids. It was a lovely morning filled with good food, kite flying, playground playing, and gifts. Ang is off shoe shopping, one of her favorite things to do if given a hall pass, while we watch "Yo Gabba Gabba" and "Miss Spider's Sunny Patch Friends." Ali and Bella can't get enough of Nick Jr. these days. I love giving Ang hall passes on the weekend to get out and just be. She gets so little free time; she's either working full time to keep the home fire burning, or cooking or bandages or laundry... it's nice to just switch out of 7th gear once in a while, right?

What is most amazing about Angelique is how well she manages moving between corporate guru by day, working out 5/6 days a week, then getting home and switching gears into cooking a wonderful, healthy meal for the whole family, giving Ali a bath, and putting Bella to bed every night. In addition to the fact that she does all that, it's how easy going she is moving between roles and how present she is in each situation she's in that is what is so beautiful about my wife. Ang and I really blur the lines of traditional gender roles of husband and wife (as do more and more couples of our generation), and this takes a lot of partnership, trust, respect, and communication. Ang brings all of that to the family with ease and a smile.

Angelique, it is a privilege to be your husband. I love you honey. You are AWESOME in everything you do.

I love you, too, mommy!

Here's an update from the Ringgold Clan...

This weekend Bella moved into Ali's old crib, and Ali got a loft, completely 'princessed out'. Thanks to the Thomases for letting us use their crib for Bella for the past year! It's really nice seeing Bella in Ali's old crib. It brings back a lot of fond memories. Ali's new loft is pretty cool, if I may say so myself. It took quite a lot of effort to transform it from the bare bones, blue, white, and raw pine loft from IKEA into the princess kitchen and tree house that it is now. Pimp my loft called earlier today to ask if they could feature it on their show. Just kidding.

Thursday, Bella, Ali, and daddy ventured to the San Diego Zoo for fun, discovery, adventure, and... MOUNTAIN CLIMBING! I say mountain climbing because the city of San Diego built this world class zoo in the steepest ravine known to mankind. The hills are pretty amazingly steep and big. So big and steep in fact that there are several "Watch out for runaway wheelchairs" signs posted on the hills. (Just kidding... not really. The words were different but that was the gist of it.) Now, tack on the double stroller full of a toddler and giant baby, and a diaper bag full of provisions, and lots of water and juice, and you get about 60 pounds of extra exercise!

The best part of the day (and there were MANY) was when Bella started crying and the GIANT panther looked up from his perch high above on the hill and licked his chops. The family standing next to us and I had a good laugh (mixed with nervous laugh) over it. I told them I wasn't above using my daughter as bait to get the lazy cats off their duff. It was right about then that they stopped laughing and awkwardly turned away.

What? What did I say? Oh well, can't take a joke, I guess.

Bella the mad scientist villain with her death ray stare... DON'T LOOK!

Friday, Ali had her 3rd swim lesson and Bella was SO ANIMATED the whole time. She loves when the bath is running and really loves being poolside for Ali's lessons. I think she's gonna really take to the water once her skin heals. Ali LOVES her lessons and is having tons of fun and progressing well.

Just imagining Bella in swim lessons doing what Ali was doing is so very surreal. Frankly, it's a mental chess match trying to measure ambition and hope for this clinical trial to be miraculous with the intense reality of the disease she has. How does one be ambitious AND content at the same time? Ambitious enough to dare to declare that "One day, Bella will look back on this and say, "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it just went away,"" and yet content in knowing that this present moment is all we really have, and that since we've already chosen to see her life and condition as a blessing, seeing her happy and animated NOT in the pool is okay, too?

Life can be a conundrum, huh?

The first Partner of the month check I got to write was to P.U.C.K. All from Bella's book sales!

Last but not least, Bella's birthday approaches! We are thrilled and blessed to be reaching this milestone. We recognize every day with EB is a gift, and some haven't gotten as many days as we have with their EB babies, so we are grateful. In lieu of gifts for Bella (we have already been given so many this entire year) we are asking people make a donation to a special program we have created.

We are giving away a copy of Bella's Blessings: a Humble Story of Providence to every family DebRA learns of who has a baby with EB here in the US for roughly the next 4 years. We are donating 100 copies of the book, and DebRA learns about approximately 25 new babies a year. They send out a "New Family Box" full of supplies and info to assist new families, and through this program a copy of the book will be included in that box! We received so much positive feedback from EB parents that we realized we wanted new families to have the info and experience and hope of our journey to support theirs.

We are also giving away a lot of great prizes (including free books) to those who donate at certain levels! Fun fun fun! Go to to read our funny entry levels and prizes!

Thanks to all of you who have supported us throughout this past year; our lives are enriched by your presence in it. We are blessed by you. Thank you.

Gotta love this sequence from Physical Therapy the other day... Bella's first High 5's!