I had lunch today with a father of a 15-year-old boy who has Down Syndrome.
We met to talk about nutritional needs and supplements especially for children with Trisomy 21. Instead, we talked about our kids. And about ourselves, as parents of a child with an extra chromosome.
It was like finally finding a friend who really gets where you’re coming from.
We’ve had vastly different experiences, and we have distinct points of view. We’re at different stages of bringing up our children, but our common ground made talking about something that even my closest friends can’t truly get, easy for a change.
A lot of people who have a kid who has Down Syndrome describe their being told about their child’s diagnosis as a life altering moment. I’ve heard too many tales about doctors’ bad behavior in such a situation or someone saying the child would be a burden, or worse. (I suppose I have a few similarly shocking stories, but they were not ultimately defining for me, so I’ll address that another day.) I see those parents spend their lives trying to disprove internalized, callous remarks by promoting the wonders of their kid.
A lot of people who have a child like mine talk about how the surprise of the diagnosis, or the abnormality itself, launched them into despair but they’ve since learned what a beautiful gift their child has bestowed on their lives. They would never trade the indelible lessons of the experience.
Certainly, I thank God for my miracle angel and want him no different, but his having Down Syndrome, and its surprising revelation, never really threw me.
My kid was sick. He had thick meconium aspiration, sepsis, and who knew what else, and he needed to be stabilized over the course of a few days to receive nitric oxide, a treatment we prayed would save his life. It did.
I don’t even remember ever getting a confirmation from a physician that my son has extra genetic material. I only recall being told a few hours after his birth as he lay seemingly lifeless on an operating table that the hospital was running tests to find out and would let us know in a few days.
Raphael’s first year was so busy with doctors and tests, therapies and getting adjusted to life, that his Down Syndrome was practically an afterthought.
I never asked “Why me?” It’s not about me.
I sometimes wondered, “Why him?” because I know how much harder my kid has to work to do everything, like sit up or swallow, for instance.
I sometimes questioned, “Why his brother?” because I had purposefully made Raphael for Elijah to have a trusted companion through life, and this new baby wasn’t what I had anticipated. I worried about the future, and I am constantly trying to come to terms with life’s new meaning of the “unknown.” One cannot predict what a person with Down Syndrome will be able to do.
But “why” wasn’t something I stewed on. How hard everything suddenly was, wasn’t even worth stewing on (although at times, my status updates on facebook may have portrayed a different story).
I’d been so focused on the healthcare side – there is no stress like having a sick child – that it’s only since Raphael has begun to really flourish, the last six months really, that I’m realizing, hey, my kid has developmental delays. My kid has Down Syndrome.
It’s kind of like, yeah, so what?
It’s surprising which things abstractly related to his chromosomal makeup ruffle me. I would have never guessed what simply doesn’t matter and what feels like a gut punch.
Tom, the dad I had tacos with this afternoon, surprised me, too. His words, steeped in reality, made me think.
He warned me not to hope for my child too much. “Hope leads to failure, and failure leads to fear,” he said.
OK, I get where he’s coming from. I’ll try to cling to true hope, not false ones.
Noticing your son’s deficiencies compared to others will never end, but they will stop bothering you one day, Tom said.
Well for now, I’d just be glad if the trauma surrounding my son’s beginning would begin to feel much less raw. After my twenty-fifth visit in 12 month’s time to The Children’s Hospital on Tuesday, I proclaimed to my husband that I was done. It’s his turn. I never want to go to that place again, because every time, it kills me a little.
Tom talked about how I can support my child’s development to a point, but the slope of improvement is so much shallower than that of a typical child’s. He made his case by taking a flat menu card and raising a corner the tiniest degree.
Expectations? Checked. I think…?
Tom told me how his 15-year-old still wears diapers, eats only ground-up food, and has few words. How his son never learned the left-right gait of walking and shuffles so slowly that the boy’s mother wants to get him a wheelchair. How his kid goes to high school but still likes to cuddle and get raspberries all over his neck from his dad. (My 19-month-old adores that, too!) How the child will never ever care, or even notice, if he’s running late. How he’s charmed because of his immunity to all the little things that stress us out.
Tom agreed with how hard it is to be the parent. Then he told me how when his son greets him with a beaming smile, shouting “I-You!” because “I love you” is too hard for the kid’s mouth to utter, it makes being a father wildly meaningful.
I can’t yet wax philosophically about some great meaning in my son Raphael’s existence.
He’s just a child I’m deeply in love with.