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December 2009
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April 2010

What She Deserves..

The other morning at school,   Zoe was navigating her pink power wheelchair around a corner , heading for her classroom door, when we came upon a Mom & Dad. I nodded to the Mom as we headed through the door.  But when the Mom passed Zoe , she let out this melodious kind of crooning sound - something in between an " Ohhhhh" and an " Ahhhhh" - It was lilting and drawn out, ending on a high note. It was similiar to the sound you make when you see a newborn baby or a cute, cuddly puppy. Definitely, the same kind of " Ahhhh" my girls use when they are lucky enough to spot a pup they want to pet. And so, yes, I am saying that this seemingly well-intentioned , probably very nice Mom gave my kid ( who she does not know, and no Zoe was not remarkably dressed, or doing anything unusually cute) the same kind of " oh-how-cute-let- me-pet-it" salutation that you give an adorable dog. And why did this bother me  .. you might wonder? Because all my kid was doing, was what she does every day, driving her wheelchair into her classroom. 
Please keep reading, and understand. I do appreciate the sincere kindness of strangers and friends. Those who sometimes ask if I need a hand, when I am loading Zoe's power chair or walking with backpacks and her walker slung over my shoulder. I usually don't need help, because I do it all the time. Because I wear mostly jeans and t-shirts, and comfortable shoes for the job and I am used to shlepping my kids' stuff around. Every once in a while though- I do need help. But this story is about my daughter. My 7 year old, sweet, smart and socially capable little girl. The same little girl who sometimes will turn to me and ask me why someone is staring at her, or why someone asks me questions about her -while Zoe watches from nearby and later questions why they didn't just ask her.
Zoe is a complex kid, I know. Her speech and vision are affected, and sometimes she is slow to recognize a far away face or a child who runs past her quickly calling hello. Sometimes strangers can't understand her speech- and I get all of that. What strangers may not know is that Zoe has been raised to believe she can do anything. And although she sometimes asks tough questions about what she is able to do, she also asks me to teach her ballet, take her ice skating and buy her a bike. All things that would be very challenging for her to do since she is unable to stand up unsupported for more than a couple of minutes. In many ways, Zoe sees herself as who she is, just another little girl in second grade. She embraces life . 
And for the way she embraces life, she deserves high fives. For the way she loves to sing and dance, she deserves the well earned compliments every little girl with a microphone yearns for. And when her hair is done with her sparkly pink headband in place, and her lips are shiny with her favorite lip gloss, she deserves the affirmation that " yes, she IS beautiful." She also deserves the extra hugs her friends sometimes offer, because they miss her for all of the time she is away from them, learning braille, or doing speech or physical therapy. And she also deserves the extra kindness from her teachers and therapists, who know how hard she works each day and how much more effort she exerts , what simple tasks may require of her-yet she never gives up and rarely complains. And there are other extra kindnesses she receives from those who know her, who know what she has gone through while ill, how her seizures affect her or the details of her labs and medical testing- things other 7 year olds know nothing about. All of these kindnesses she has earned, because they are given with respect from people who know how truly amazing Zoe is.
That mom the other morning.. .well, it may have been pity or maybe even compassion in her voice, I'm not sure. I know that she does not know Zoe and I know what it wasn't. It wasn' t what Zoe deserved. Because after all,  my kid was just doing what every other second grader was doing that morning- going to class. She just wasn't walking in ...


Helicopters & Hospitals and Ordinary Time...

I sat at mass yesterday,with Zoe's head on my shoulder, her small arm tucked around me. Olivia was on my other side, listening attentively as the priest talked about the meaning of ordinary time. This is what we are celebrating now , the period of ordinary time defined by the church as the journey from Jesus' birth to his death.
Because I care for a child with special needs, the word ordinary strikes hard.To me this word "ordinary" means typical. And typical moments are something I sometimes long for, like an ordinary day  where my daughter can run to meet me at the sidewalk after school ,her backpack hanging from her shoulders. Instead ,she happily rushes to me in her wheelchair. Sometimes I wish for ordinary- for little girls who can have play dates after school, instead of coming home to rest.
Being the parent of a special needs child requires first the most basic of mothering instinct, the kind that comes from mothering the life within your womb, the kind that grows with that life. Mine came to me early in my first pregnancy with the diagnosis of a complete placenta previa . It hit fast, with little time to question that instinctive and fierce protectiveness . Quickly I shed my workaholic ways, and followed doctors orders. Both the baby and I were " high" risk, and for a long while my only outings were to weekly doctor appointments. These docs treated and consulted with their expert opinions . Their appointments focused on  predictions and likelihood of outcome. But one visit, post-exam the conversation changed-  my complication had unexpectedly resolved,  and suddenly these Docs were releasing me from bed rest. Driving home, my husband and I made our first decision as parents that day. We would wait a bit longer, staying on bed rest - just to be sure.
Within the week,my husband was rushing me to the local hospital and from there -within the hour I was transferred via helicopter to another hospital that had a specialized department for high risk maternity and neonatal care. There I stayed for a few weeks more,  with round the clock monitoring, steroids- to mature the baby's lungs and anti-labor medication to delay delivery as long as possible. My early morning began each day with my husband by my side, and each night he came again -kissing me goodnight before he went home alone each night.
The final outcome was dramatic, once the baby's lungs were mature- we prepared for an early c-section. The hour before, the same specialists declared my condition had spontaneously resolved. My original OB disagreed and  delivered Olivia via c-section at 32.5 weeks, the complete placenta previa still present. Our parental instincts were correct.I had no idea then, the importance of that twice learned lesson. 
There were complications with Zoe's pregnancy also, but we navigated through them easily with the experience we gained from my first pregnancy. Zoe was delivered early at 34 weeks and within the first year of her life, she experienced several unexplained illnesses. She had " colic" , and even then her extreme infant neediness seemed unnatural. My round the clock presence was soothing to her, I could tell- but what was I soothing away? What was the underlying problem that made this sweet baby so restless, so desperately uncomfortable?  
Within the first two years of Zoe's life, I could see unexplained physical abnormalities - muscle weakness, delay in mobility, unusual eye function- there were even some slight unusual markings on her body. Within those first two years, I was the only one obsessed with putting the big picture together and getting answers ( see October 29, 2005 blog entry for published article on this..) Within those same two years, there were also several misdiagnosis'- acidosis misdiagnosed in the local ER as dehydration, eye movement delay that was later diagnosed as severe strabismus, physical markers overlooked as unimportant, unusually large head circumference that later fit the neurological diagnosis, an abnormal genetic blood panel interpreted by a local pediatrician as being insignificant, a brain MRI image misread, mislabeled  and documented  as normal, later reread and re-diagnosed with several significant abnormalities present since birth. Most of these errors we only discovered when I gathered up my baby, my determination and all of her original medical data to travel from Scottsdale to the Cleveland Clinic in Ohio, where Zoe was finally diagnosed with mitochondrial disease- and we, her parents-then wept. We wept with relief and eventual grief. Two years later, history replayed itself when I gathered Olivia, then almost 5, and went again - coming  home with the same diagnosis for recent unexplained fatigue.
When you parent a special needs child, this type of experience hones that natural mothering instinct. The steely resolve, determination and patience you gain prepare you even further. Truly though the biggest requirement of all is   the ability to celebrate ordinary time every day- ordinary time being the every day, the journey we all have with our children- from their birth to their death.