Shine On

My daughter is the brightest light I know and despite the many clouds that have covered her sky in the past decade, her star remains, forever twinkling.  My daughter, Nadia, has 22Q11.2, a chromosomal deletion that made her early years almost unbearable in their uncertainty and responsibility, the sterilized smell that permeates every hospital and doctor office still brings me instantly back to those dark and stormy days, her surgeries and those long and sleepless nights.  Yet even when Nadia was an infant and toppling toddler, I always knew that no matter what her deletion had taken away from her, her spirit had given her this enormous dose of joy, unparalleled and raw.  Her happiness sparkling all the more in such  stark contrast to the despair I felt in caring for someone whose needs were not in the index of my well-used parenting book from rearing my firstborn.  My teary uncertainty always balanced by her surprising ability to seem to know just what we needed to keep the faith--to belly laugh before I knew she could hear what I was saying, her coy smile beaming at me from her infant car seat on the way back from long specialist appointments, her jokes in sign language after speech therapists told us to consider a laptop to type her thoughts, her ability to dance the macarena with ankle braces and not miss a beat.  For years, we have tried our best to find the right path for her, with doctors, teachers and life, but without a doubt, Nadia has lit the way…in her inexplicably fearless way.  

All along we have been saying to ourselves that it is remarkable that Nadia's spirit, unlike her immune system, remains uncompromised.  In the 29 years before her arrival, I never realized all of the things I took for granted.  I honestly never gave a thought to how little it would take to make me happy after seeing our dreams crumple when our daughter was first born and we realized she would always have to struggle with things we had never before counted as blessings--the luxury of two kidneys, a normal immune system and hearing, a typical working memory and number sense.   Even after heart surgery at 5 pounds, kindergarten at 5 years and a whopping 28 pounds and middle school at 10 years and under 4 feet tall, Nadia still appeared, until recently, to be larger than life, her loud chuckle enough to spread cheer on even the hardest of days.  Her joy and her boundless affection the perfect antidote for her silent battle with a missing piece of chromosome, one that robbed her of a sequence of about 3 million DNA building blocks (base pairs) on one copy of chromosome 22 in each cell.  Something that sounds complicated when I read about it, but incredibly, is even more convoluted in real life, the almost  200 known health and developmental issues 22Q causes in children impacting Nadia in big and small ways, in the past, present and future, like a dark unknown lurking at every corner.  We try to ignore the list of worries and doctor visits and carry on with our chin up and our big, fat bucket list, determined to enjoy every step of the way after her tumultuous start. But,  it isn't easy, particularly when I see Nadia's light flicker, dimmed by life, by IEP's, by cruel kids, by differences and ignorance, by things that matter to her, the simple, but the oh-so-complicated.

As Nadia enters her third month of middle school, I will admit that the transition has been akin to expecting to drive over a speed bump and instead finding ourselves driving up Mt. Everest in a Yugo.  I say driving up, because we haven't yet reached the pretty part, the part with the view, the part with the downhill, the easy coast at the end.  This appears to be the part where I am putting the pedal to the metal and yet accelerating just to gain enough momentum to move my car, my daughter, slightly, imperceptibly forward.  It is a big mountain, and most days, I honestly can't tell if I have made any progress, or more importantly, if Nadia has made any gains, because the view up the huge mountain looks the same. Daunting. Nearly impossible.  Never-ending.

I keep referring to Nadia's IEP like it has all of the magic answers to scaling the mountain of public education with a daughter whose IEP has health and learning components that are supposed to help her in almost every possible area of school--from germ patrol for her severely compromised immune system to gym patrol for her fused spine, joint pain and solitary kidney to reading, writing and math, for the areas of her brain and memory that were all impacted by that missing minuscule piece of chromosome 22 .  Apparently, that sequence of 3 million DNA base pairs had a lot it was supposed to do.  Go figure.  Unfortunately, asking a new middle school team with a complicated schedule of teachers, aides and classes to accommodate Nadia's deletion based on her IEP is like trying to ask Nadia to drive herself up the mountain, with limited directions, no license and no GPS.  She may be able to stay on the road, she may even be able to keep up with the other cars for awhile, but she would have no idea where she is going, other than going with the flow.  No, she isn't causing accidents and holding up traffic. She isn't flagging someone down to say she's lost.  But, she has no business being behind the wheel.  She doesn't know how to navigate the road ahead, she doesn't even know where she's going.  Sadly, this is precisely the way her middle school day progresses.  When I ask for feedback, for special directions, for a navigation system, for modifications so that Nadia can see over the steering wheel, can get to where she wants to go, the teachers seem puzzled, frustrated and disjointed, their part of the trip a small part of the journey, unaware that without each piece, Nadia isn't moving forward. That she might, God forbid, crash.  The teachers don't see her when she comes home at night, crushed and feeling completely lost.  The teachers have not once checked in to let me know if sickness is circulating in her  classes, a worry that has, remarkably, taken backseat to the fact that our daughter is drowning in middle school.

As Nadia continues to come home each night with an empty planner with the exception of "Read," despite 8 classes in her schedule, my hope in special education, in appropriate, individualized instruction dwindles and Nadia, my larger-than-life little one, finds her confidence shrinking as well.  "How's Gym?" I ask her, hoping to find a neutral topic.  She replies, "I bombed it."  "Gym?" I ask again.  "No, German. Or Gym," she replies.  "That's too bad. How come, peanut?" I ask, feeling my heart sink as she shrugs her shoulders, "I'm not sure."  She switches gears, "I am supposed to make a flag of John Cabot, though."  Hmmm.  That's a new one for me, but it turned out to the epitome of why switching classes and teachers multiple times a day in middle school is the less-than-exhilarating uphill climb up the mountain.   

I proceeded to ask Nadia about John Cabot, who is apparently an Explorer that she's learning about in Social Studies.  I said, "Well, what do you know about John Cabot?"  "He's from 1492," she says. "Were you born then?" she asks, staring at me with her big brown eyes. "Nope," I say. "That was a really long time ago, Nadia."  "Was Dylan?" she wonders, even though he is her 13-year old brother, her deficiency in her sense of time not allowing her to understand the timeline of events, past or present. " Nope," I say again, wondering if I should explain how long ago it was, but she interrupts, "He was an Indian explorer from Italy, I think. I'm making notecards."  "Do you have a test coming up?" I inquire.  She ignores me and continues, "He sailed seven seas. I think, and I have to find his flag and color it."   She walks over to our computer, googles "John Cabot flag" independently, pulls out a piece of white paper and starts sketching the flag. Perfectly.  She colors it in and as she does so, I feel ever-so-slightly reassured.  I compliment her, "WOW. I didn't even know explorers had flags. That's impressive, Nadia. What did he do when he was an explorer, do you think?"  She contemplates the question, and guesses, "Mine died. Looking for gold?"  Hmmm. Without knowing who John Cabot is,  I try to summarize my surprisingly limited recollection of explorers, thankful it is was recently Columbus Day and I refreshed my memory, and she replies, "Did you know those explorers?" "No, sweetie," I say, tears suddenly stinging my eyes.  As she's coloring, she says with a big smile that lights up her face, "That would have been exciting, wouldn't it?"  Yes, yes it would, I think, staring at her twinkling eyes.  Deep down, Nadia is still happy and she is healthy enough to attend school.  I need to keep my eye on the prize, I tell myself. On her extraordinary light.  

I read a quote recently from Yogi Bahjan, part of my more-zen, less-wine approach to our middle-school struggles, and every time I reread it, I can picture Nadia, my shining star, "Every human needs loftiness: exaltedness, self-confidence and appreciation.  To be grateful that we are alive at this moment and we are alive together.  It's like stars in the sky on the same night.  Some are big, some are small, some are shining.  Some come late. Some come earlier.  But in the brim of the night, all are lit on their axle.  On their orbit, they exist.  That is the condition of every human."   For Nadia's joy and sparkle, and simply having her here with us, I am grateful. For today, for now, despite the uphill middle school climb, I try to remind myself that is all that matters.