The Well

Nadia turns 9 this week. 9 hardly seems possible when I think of how quickly time has passed between her swift arrival on a crisp, gray March day and today.  The nine years that have passed have taught me more than all 27 years before she became my daughter.  Unlike the first weeks and months after I first held her, my thoughts are not paralyzed with fear or worry.  Today, I woke up and knew with certainty that there is no way I could feel this happy had I not experienced the sorrow that accompanied her first years.  I have kept a tattered page from the book "The Prophet" in my dresser drawer since Nadia was a tiny baby, when she was recovering from heart surgery, nursing every hour and struggling each day to even breathe comfortably.   I read this quote in the book and it struck me so profoundly that I actually ripped it out and shoved it in my messy drawer, for later, for when the joy presumably arrived and the nauseating fear subsided-- "The deeper that sorrow carves into your being, the more joy you can contain."  I tore the page out and held it, glancing at it over and over again over the past near decade and marveling in the highs and lows at how true it rings and it has never been more true than it is today.  I am not one to fundraise, to preach, to wear my cause on my sleeve, because I am a private person… because I have a baby girl to protect that doesn't need a label or a whisper behind her back. 

 Over the years, I have learned that the 22q11.2 deletion that once defined how I thought of my sweet baby girl, that once took my breath and my dreams away, has faded into simply a word on her chart and a source of hope when I read it in the latest article on stem cell therapy's incredible promise.  I look at Nadia and don't see her deletion, heart repair or her missing kidney.  I marvel that she has the sweetest and biggest soul that I have ever seen in a child.   I don't see her speech delay. I don't see her low tone or foot braces.  They are long gone.  She gave up signing at age 4 and never looked back--although she often uses hilarious gestures while she is dancing and singing in the shower.   I don't see her learning difficulties.  She just read me an entire chapter book and giggled at the funny parts with such delight that I found myself captivated by a children's story. About hippos.  I don't see her doctor visits--20 in the past three months.  When we left her appointment last week, she clutched my hand while skipping and told me that "our date" was her favorite part of the day.  I don't see her fused spine, because she surfs and skis and does cartwheels and she literally bounces with joy.  Most days, I don't even see her immune deficiency.  Through magic, impossibly wonderful teachers and friends and loads of prayers, she not only goes to school every day, but loves school every day.  I think our luck is quite simply otherworldly.  Honestly, I think her love and fairy dust have healed all of us and literally blown into every little corner of our world.  

In utero and at two months, we had the crippling circumstance of wondering what would happen if we lost our baby, our precious baby.  We were told that things might work out, but she was little.  But her labs were off.  But her numbers were low. But they didn't know. But she had this deletion. Birthweight at 6 weeks old and preparing for a long heart surgery that would bring a grown man to his knees. That did bring my doctor husband, the one that never worried or cried, that tended to gunshot wounds in Trauma Centers, to his knees.  

 We shut off the radio. We went to bed at 8.  We slept fitfully, in between her feedings, and laid solemnly in bed until we had to get up and face the day.  We stopped talking to friends with healthy kids because it was impossible to relate to teething and solid food debates when we were researching Duke doctors to do thymic transplants, or finding specialists to help with surgeries.  We literally curled up and rocked our baby, more for us than for her,  and needed our own moms and dads more than we had since we were children.  I wondered if I had taken more prenatal vitamins, eaten more wheatgrass, more green smoothies, avoided whitening toothpaste, gotten more sleep in pregnancy, if I could have made a difference--spared my baby girl the list of anomalies that stared at me from the Waisman Center and the brochures that accompanied each visit to a different specialist.  

And then, the sun came out.  It was brighter than anything you have ever seen.  Nadia, even as an infant, had a smile so sparkling and brilliant, that it made her eyes scrunch shut.  Apparently, the well that sorrow carved was indeed deep enough to hold a lifetime of joy in the smallest imaginable package--20 lbs. at 2 years, 30 lbs. at age 6, 40 lbs. at age 9.  Despite her size, she packs a serious punch.  She takes everything in stride and has such a big personality that sometimes I am surprised when I see the scale that she could truly be so little.   

I think that often we want our kids to be like us, to meet our standards, to make us proud with their achievements and mimic us so that we can relate, so that we can show the world how successful and bright our children are--an extension of us.   In this case, I think that the opposite is true.  I think we more often strive to be like her, to accept her for precisely who she is and for what her best is rather than "the best."  A gift that clearly came with a hefty price tag.  She loves so deeply, enjoys so richly and feels joy so intensely that it is like watching a beautiful sun rise and feeling the heat of the best summer day, all at once.   She isn't reserved or self-conscious, like me, and our journey has let me see the best and most beautiful parts of everyone.  So, on her birthday, I felt compelled, contrary to my nature but so fitting with Nadia's, to share something personal with the world, without worrying what others will think.

Since that cold and overcast day in March 9 years ago, we have witnessed countless quiet, unspeakably beautiful acts of kindness towards Nadia and towards us.   She has turned our world, our friends, our coaches, our teachers, our neighbors, into family.  From the friend who brought me her pillow when I first checked into the Children's Hospital with Nadia because she was a nurse and knew that her pillow would be softer, more comfortable, to the stoic neighbor that brought soup and dropped it on our doorstep, with a tiny note and an angel pin that remains affixed to the shade of her infant car seat that I just can't part with, I am left in awe.  From my sister and family who have listened to every high and low and sifted it out for me with such grace that I swear they walk on water, to the friends that gave us a little jar of glitter fairy dust that still sits on Nadia's dresser and will surely be sprinkled somewhere on her wedding day, the world has rallied around us and held us together.  

Nadia recently made rainbow loom bracelets for practically the entire team and stands at my son's basketball tournament.  She took such delight in each gift, in sneaking up and delivering them, in selecting just the right colors and in seeing the look on their faces when she gave them her gift.  I was touched. But, honestly, more grateful for the brilliant guy who marketed rubber band bracelets and kept her occupied for a day in a gym.  However, the next weekend, when I saw, not one, not two, but practically a dozen people---coaches, grandparents, teammates, roll up their sleeves, just a bit, or sneak a little wink, to show her that they had worn it for good luck, I saw her literally light up and stand taller.  And I knew. Right then.  This is the story of Nadia.  She hugs bigger. She burns brighter.  She loves deeper.  And she is the happiest little girl, despite her differences, despite everything. I think she is honestly here to teach us that our well can run over with joy if we just live simply, happily, and with loads of love for the world.  She accepts everyone just as they are.  On her birthday, I hope that the world can see, above everything else, that love and acceptance is indeed all we need.  

I still worry about her as she grows up, that her differences might matter more. To others. To her GPA. To herself.  To colleges.  To peers.  But, I watched a video, 1,000 Miles of Luca, http://vimeo.com/84061549,

recently (an incredible video) and realized a simple truth.  We don't spend time with people because they are the smartest, the most academic, the most athletic, or the most articulate.  We spend time with people because of how they make us feel.  I hold fast to that today because I am celebrating my amazing daughter and the ripples of joy that she has spread in only nine years.  The skies the limit, baby. The skies the limit.