I’ve been replaying some of the past year’s joys and biggest blessings. I wrote about my favorite moment here https://myupside.wordpress.com/2011/01/09/sound-asleep-2/, but there were several highlights and interesting transitions.
Elijah starting preschool was a particular thrill. He moved from crib to big boy bed, and he potty trained. He left toddlerhood in the dust.
Raphael sat up on his own not terribly long after his first birthday, and we were finally able to prop him up in a restaurant high chair. He signed his first words: fan, music, milk… By New Year’s, he really truly crawled – with his tummy up off the ground!
We said good riddance to regular deliveries of oxygen tanks. (I thoroughly disliked that Elijah used to welcome the Apria home healthcare company driver by name.)
We all traveled to New Jersey in May for my nephew Clayton’s bar mitzvah, lugging an oxygen concentrator (a clunky contraption that made oxygen for my son) along with the regular pile of gear – like a double stroller and car seats – that kids need when they travel. Clay dedicated his d’var torah to his youngest cousin with Down syndrome and requested that his friends donate to Special Olympics rather than give him a gift. (Can you imagine a 13-year-old eschewing gifts?) We cried in synagogue that day.
The most transformational moment, however, was when Raphael turned one.
June 2010 brought a mixed bag of emotions yet gave me intense comfort in my world. It felt like confirmation that Raphael was really here to stay.
Infant mortality is a fact of life any new mother does her best to put out of mind during the first year of her child’s life. Sure babies are resilient, but new life is terribly fragile.
With Raphael, I never felt like I could really be sure he was going to stick around.
I thought about it a lot, even if it was just a persistent back-of-the-mind nag.
When we were facing uncertain life with a sick newborn (“very sick,” the doctors kept saying with a stone straight stare), and he wasn’t yet responding to various treatments, I called my friend Jamie, a rabbi, for guidance. We had to make a decision about a risky life-saving treatment with potentially debilitating side effects, and Jamie said, maybe our boy, who didn’t even have a name yet, was trying to tell us something. Maybe it was his time. Maybe that was what was supposed to happen, as if it would be better to let a sick, disabled child go.
“No!” The word resounded in my head with such intensity. It was at that moment that I think I chose life for my son.
He responded and didn’t need that last ditch procedure after all.
But after a most challenging first year with a few middle-of-the-night close calls, life was never a secure enough assumption.
Raphael’s first birthday was a landmark that brought immense relief. I’d been anxious in the days leading up to it. In the darkest hours of the night, I kept thinking, “Oh, please let him make it to that day. Please rush me there so it feels conquered.”
Although I’ve relaxed since he’s turned one, it’s still there: the anxiety. The fear. The compulsion to overprotect.
The other day, Raphael picked up a cup-shaped bath toy and before I knew what happened, he poured water right into his mouth, which slammed down to his lungs like Niagara Falls.
It was much more than a gag. He doesn’t have the reflex to protect his airway. He gets all his fluids thickened so that they pour slowly down and prevent aspiration.
In that moment in the bath, extreme thoughts about drowning and loss sprang to mind. Greg and I both jumped into action, and we glanced at each other the way parents of a child who’s been through a lot look at each other, where an entire conversation, an entire world, is exchanged in wordless connection. He and I always bathe both boys together because with Raphael’s floppy muscle tone, it’s too hard to do it one-on-two. Even so, my husband and I know we can’t do everything to protect our son.
Then there are the days I feel silly for indulging all the worries. I have this perfect kid, I say to myself. He IS thriving. He is more than a half year past that terribly significant birthday milestone, and he’s a different person in many ways.
I realize that I am different, too.
With every sweet, or sensational, or sad shift in Raphael’s growth and development, I keep changing, too. We are on a precious journey together.
When I had Elijah, I felt I was also utterly reborn – as a new mother.
With Raphael, the metamorphosis of becoming a mother of a child who has special needs is a nonstop rollercoaster of insights and fears, of utter relief and joy, and the ever-present sting of behind-the-eye tears.