I have a silver linings kind of life.
We, as a family, grapple with some enormous challenges, sometimes on a daily basis. We constantly have to make allowances and adjustments and modifications that other families don’t ever have to consider. But, because of all that, I think we’re probably closer than most families.
I have a son who struggles in so many ways, but who approaches life with joy and wit and humor, and is capable of so much more than he lets on.
I have three other children who often get a combined twenty five percent of my attention–but who are rarely resentful of that, who are fiercely protective of their brother and love him with an uncommon devotion.
We have days where pain and sorrow and frustration permeate every corner of our house, leaving no one untouched. But those days make the happy days happier, and sometimes the silver linings are so bright that it seems like that’s all that life is.
Overall, I think we’re much luckier than we could have been.
Sixteen years ago, though, when Sam was an infant, I didn’t have any of those silver linings…all I had was an ever-growing list of problems and a skyrocketing level of panic. Sixteen years ago I had doctors and therapists with no real answers; they told me to try this therapy and that therapy but basically that I just had to wait and see. So I did all of the therapies, and I waited…and while I waited I looked around, and didn’t see anyone in my community with a child like mine. And didn’t see anyone in my family with a child like mine. So there was no one to guide me and no one to offer any kind of hope for the future. And even if I had been the kind of person to ask for help–and I wasn’t– what could I have said? Could I have said “This panic is choking me and I can’t breathe” or “I’m drowning in my own helplessness”? It never would have occurred to me to say those things, and so I didn’t say anything–I sat and I waited, with fear as my constant companion, while the entire life that I had known completely passed me by.
I can’t actually describe how lonely and terrifying those years were, because that would mean revisiting them, and I try not to do that if I can help it. But it comes back to me sometimes on a very visceral level, when I see a two year old boy walking with his mother in the street, or I look at old family pictures, and I still cry for the loss of the ordinary life that we never got to have.
After a few years we started to find people to help us, people who became Partners to us, and life was good for a while. But when Sam was in eighth grade we found ourselves suddenly and unexpectedly adrift at school. Sam became an anxiety-ridden and unrecognizable version of himself, and I was back to being afraid all of the time. I couldn’t help Sam, I couldn’t take care of myself, and so I couldn’t take care of my other kids…. My family fell apart completely.
That’s where we were when we came to SINAI.
At 5:04 pm on the first day of school, Esther Klavan, the director, called to tell me that the day was “fine”. I could hear in her voice that her definition of fine and my definition of fine were not at all the same thing, but still, she said it, and it gave me a shred of hope to cling to, some optimism to keep me going for the next few days. We spoke again a week or two later, when she called to say “Well, now that we’ve gotten to know Sam a little better…” –and I cringed, waiting for the inevitable bad news—-and she continued “we reconfigured his entire schedule to make it work better for him. The new one is in his backpack”. She reached out a few times in the weeks after that, always to apprise, never to complain, sometimes to ask for our opinion, but always in the spirit of partnership and working together to achieve a common goal. But even with all of that positive reinforcement, I worried endlessly about how Sam was doing at school, and found myself holding my breath most afternoons until we were safely past 5:04 pm.
And then one morning right around this time last year, I remember sitting and looking out the window of my room and feeling an unfamiliar lightness, and the edges of some distant emotional memory. And in trying to place what it was, it occurred to me that I hadn’t had one of those “let’s figure this out” emails from Esther in MONTHS. That I had stopped looking at the clock in the late afternoons. And that Sam, my anxious, terrified, broken kid, had been running onto the bus every morning and coming home just as happy. And it hit me like a lightning bolt, like some kind of revelation, that that unfamiliar feeling was happiness….that I was starting to remember what it felt like to be happy.
We still have our challenging days. I’ve tried to make my peace with the knowledge that for Sam, personal growth means increasing his stride to five or six steps forward before he ends up taking one step back. But those steps back, because of the understanding and support we have from SINAI, are not as frightening as they used to be. They’re not as demoralizing as they used to be. It’s easier for me, now, to see those steps back as a reminder of how far we’ve come, rather than a sign of how far we still have to go.
So yes, SINAI does amazing, spectacular things for children. But SINAI also understands that those children have siblings, and parents, and a broader universe of which they are only one part. I am forever indebted to SINAI, and to Esther Klavan and her team in particular, for engaging Sam in a way that makes him feel confident, successful and happy. But beyond that, I’m grateful to them for understanding so intuitively the despair that parents can feel, and for instinctively knowing how to ease that burden. For seeing that even the seemingly strongest of parents need someone to lean on. For giving my family the strength to go out into the world with our heads held high, with grace and dignity. For reminding me, for the first time in a very long time, what it feels like to be happy. For giving me back all of my silver linings, and encouraging me to believe that there are so many more we have yet to discover.
Ilana Chill was a litigation associate at Cravath, Swaine & Moore for seven years before her son Sam was born. Ilana gave this speech at SINAI’s 2017 benefit dinner, where she and her husband Adam were honored. She and Adam are SINAI parents.