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.
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.
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?
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 www.ebhope.com 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!