Oscar turned ten last week. Ten. A decade.
To me that day marked far more than his remarkable growth to the earnest, slender, and well-liked boy that he is. It also marked the 10th anniversary of the scariest day of my life and my survival of this first decade of raising a child with a disability.
I broke down in tears several times during the day, starting with Oscar’s birthday honoring circle held in his 4th grade classroom. Sitting cross-legged on the rug with his teacher, aide and 16 peers, I listened as each offered an appreciation of Oscar. He’s a friend of animals. He plays with me when I ask. He’s always happy. He’s a hardworking student. He eats lunch and talks with me. He’s teaching me to play basketball.
More than their sweet words I heard the sincerity in their voices. No eyes rolled, and no secret smiles were exchanged.
When it was my turn to honor Oscar, my eyes filled, my nose stung and my voice caught in my throat. I looked to Oscar who said, “It’s ok Mom”, and so I managed to speak, somehow letting only a few tears fall. I told Oscar I was proud of him, and then I honored his classmates for being such supportive and caring friends all these years. Oscar sat smiling in the special birthday chair nodding in agreement. Those tears turned to sobs as I left the classroom and could finally let the emotions roll unchecked.
In our PWS support group meeting last weekend I shared more than I have in a long time. Encouraged by our facilitator, I talked about how I celebrate Oscar on his birthday but I do not celebrate the day of his birth. I talked about how I wanted to mark the passing of this decade with something significant for me, like a hike to the top of a local peak, because so much of my life has been defined by being the mom of a kid with PWS that I don’t know who I am anymore. And I talked about how lonely I feel sometimes.
As I sat in that meeting, tears streaming down my face, I realized that Oscar’s 10th birthday is not only significant because I survived, but also because I am painfully aware that this birthday marks the dawn of a new decade of challenges. I wrote on my blog that I am full of hope, but I realize that I am also undeniably afraid.
Ten years ago I feared Oscar the infant who might one day steal food from garbage cans or have tantrums so disruptive we would never go on vacation or ever again attend a holiday celebration because of all of the food challenges. And now, ten years later I am starting over, fearing the next decade’s challenges. I am deeply worried about finding educational placements for middle school and high school and managing the challenging teenage behavior associated with PWS. I am worried about bolstering Oscar’s self esteem as he begins to notice the widening gap between himself and his typical peers. I am worried about finding engaging work and appropriate housing options so that he can be happy and fulfilled in his adult life without feeling deprived of opportunity. I am worried too about keeping Oscar safe in this food-filled world.
But most of all, I am worried that I will need to do much of this alone. I do have a supportive and involved husband, but he has a demanding career that provides for our family, and so by necessity this task of supporting Oscar has largely become my own unpaid, unchosen, career.
It’s all a bit overwhelming and so on Oscar’s birthday I really needed to stop and appreciate the view, as one might, for example, when climbing a steep mountain. I know it’s terribly cliché, but I really am looking ahead a few years and seeing lots of precipitous trails, some potential for slipping, some places where we might need to tie-in, use a belay, and really stretch for that next hold. Stopping here at the decade mark I am looking back down the path we’ve hiked and I see how far we’ve come. I’m proud of where we are. I’m proud of what I’ve learned and who Oscar has become. I needed this break in the climb -- to mark this birthday -- so I can remember this moment when things are pretty good, when Oscar is happy and learning and thriving. When the school he attends anticipates, rather than fights, his needs. When his flexibility is actually increasing and we’re able to manage his food security without too much sacrifice for the rest of the family. I needed this day to take stock and collect resources before getting back on the trail.
When Oscar was born I yearned specifically for connections with other moms who had kids with PWS. I wanted to talk to moms who, like me, were so awash in grief over this devastating disorder that the chant “Prader-Willi, Prader-Willi” haunted them every time they peered into their sweet baby’s eyes. I wanted to talk to those who lay awake at night puzzling over the minute details of their kids’ development. I wanted to discuss alternative and mainstream therapies, diets, and how to explain to relatives and teachers that even just one unplanned cookie or carrot is not ok. It took me a few months but I found those parents in our local support group and in an assortment of online sharing lists.
And then as time passed I found support in other places too. Family, typical friends and parents of kids with various disabilities have all become part of my expanded and treasured support network. We’ve woven in and out of the PWS community over the years, staying connected but participating a little less in our support group, and fundraising events. Life with three children is complex and, at times, we have had to favor activities centered on the other children.
Facing this new decade I feel the loneliness and fear of those initial days after Oscar’s birth creeping back in and coincidentally my PWS community has appeared to shore me up again. Oscar’s birthday fell exactly between our annual state PWS conference and our local support group meeting. At the conference I dined with close friends the night before and then buzzed around the next day at the conference reconnecting with families I hadn’t seen in a while. That night I enjoyed a fabulous dinner laughing and sharing anecdotes with the conference speakers -- my two favorite PWS experts -- and the leaders of our state organization. Two weeks later at our support group meeting the nods of understanding from a room full of both new members and treasured friends strengthened me. And then another old friend whose daughter with PWS is just three weeks younger than Oscar came to town and surprised me with a visit this week. We shared pizza and wine while our kids played foosball and hide and seek. I’m having coffee with another mom on Sunday and next week I’ll enjoy the rare treat of lunch with another two of my dear friends whose kids also happen to have PWS.
None of these events is unusual but the collection and timing is a welcomed coincidence. In the space of three weeks I will have somehow connected with almost everyone I know in my state that has a kid with PWS. My PWS community seems to be reminding me, just when I need it most, that I really am not alone after all.
*****
Mary blogs over at Finding Joy in Simple Things about life with Oscar and his two siblings, Abe and Ruby.
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