The word is Grant– in the verb form it means to be given something…the dictionary explains (a right, a power… property etc.) to bestow on, impart to, present with…
On August 22nd 2012, my husband Mike and I jumped in the car- as planned- leaving our home in Westwood with my toes manicured, casseroles frozen and reminder lists for the upcoming days neatly placed on the counter . I hugged the overnight bag on my lap- as Mike backed out of the driveway and waved ferociously at 6 year old Jack, and 5 year old Caroline.
6 ish hours later , Michael Grant Nozzolillo was ours. From the first moment, he was Grant- having two Michaels seemed too confusing. I thought the name was strong and with a last name like Nozzolillo we needed to keep it short.
In the very beginning there were signs that something might be wrong. The bobbling head, low muscle tone, pyloric stenosis, delayed milestones and most notably the sound and vibration of a car without a muffler which emanated from my little baby all the time. For the first few months of Grant’s life we searched for answers and sleep, trying to contain the anxiety which was bubbling up, from our older children and large extended family.
In December 2012 upon the urging of our pediatrician we had genetic testing done in hopes that the results would halt the middle of the night google searches and bring some answers and remedy’s to the many unrelated symptoms . While a large deletion was identified, on chromosome 17, with almost 100 genes involved or missing… this did little to provide a definitive diagnosis or a crystal ball. There were still no clear cut answers- no pill to prescribe- corrective surgery-no roadmap, and no umbrella diagnosis . Grant’s unnamed syndrome would leave us to keep wondering and keep searching.
The medical literature warned of the possible effects or deterioration to almost every organ system- genes missing that suppress tumor growth- increased likelihood of ALS- bleeding disorders- and on and on…all possibilities, no absolutes and only time and advances in sciences would reveal the truth. For now, we were advised to love our baby and manage things as they came along, allowing him to write his own story. Go back to work, and grocery shopping and hockey practice and laundry.
Finding the balance between living in the moment and searching for answers is hard. In the seven years since then, as a family, we take turns managing the uncertainty with grace and perspective on some days and succumbing to the fear of the future on others. This uncertainty can be debilitating and lonely. Are Grant’s recent bout of falls at school caused by typical first grade clumsiness or are we standing on the precipice of another diagnosis? At some moments I find that the fear crashes over me, knocking me out of the present and into some dark deep hole where I can’t catch my breath. And then I remember how five year old Caroline learned to stop his GJ tube from beeping, and how Jack looks lying next to Grant holding his hand at night. I remember how my sister, Callie, alternated spending the nights with Grant while he was in children’s for over a month, so Mike and I could keep things normal for the big kids. I remember the huge village which surrounds him with unconditional love. It’s not easy but kids like Grant force us practice the art of living in the moment while we wait for answers.
Each year when I bring Grant to The Feingold Center and I sit, first with Jessica and then Dr. Nowak, I am reminded of the hope. As I pull out of the parking lot I feel that uncertainty a little less and in it’s place grows perspective, positivity and gratitude
At The Feingold Center they allowed our family to grieve for what we expected the journey to be, to listen to the questions- both logical and crazy right from the beginning and to gently deliver answers were they could – wrapped in the promise of continued searching for what would be uncovered in the future.
A few years back pulmonary testing confirmed a diagnosis of Primary ciliary dyskinesia or PCD. This is a very rare respiratory disease which I explain as a cousin to the more commonly recognized Cystic Fibrosis. The systems are related to mucus clearance- and provide some answer to why Grant’s 5 month old lungs looked so diseased. Incredulously, there still is no clear connection between Grant’s PCD and the genes which he is missing. But, the Feingold Center is working to find the connection- Jessica and Dr. Nowak work behind the scenes to connect with those doing research on genes which are involved in Grant’s deletion in an effort to connect more dots, which translates into possible treatments and hope.
For now, not knowing the future is the hardest but having Grant makes us the luckiest. This seven year old is a happy boy who has already written the first chapter of his own story. He’s beaten so many odds. He loves legos, and movies and his 6 cousins who all live within a mile of him.
My hope is that every night I can kiss Grant, and when I tell him that he’s the best gift God ever Granted any of us, he won’t have to ask me over and over if he’s going to end up in the hospital tonight. I want to tell him for sure, I know how to make him better. At The Feingold Center, I am SURE we will find answers to some of the worries that keep us up at night. I have seen for myself the rapid pace that genetics is changing. It’s my hope that in the future answers will be found and worried moms, dads, and grandparents will sleep a little better. I hope that more families will have access to the brilliance of Jessica and Dr. Nowak and that they will find peace.