I am unraveling. It seems like I am simultaneously standing in a hole and having dirt shoveled onto my head. Everything is spiraling downward out of our control. Out of my control. Out of anyone’s control.
First, Owen was born and they couldn’t tell us anything about his future – would he walk? Talk? Feed himself? Live with us when he’s 40? We drew up a Special Needs Trust.
“Wait until after the first year”, they said. “You’ll have 90% of your questions answered.” That first year came and went, and we knew he would walk one day, and we knew he would talk one day, and we knew there was a light in his eyes telling us he was going to be capable of living his own life. We allowed ourselves for the following eighteen months or so to dream of a future for him – a future for all of us without having to take care of our grown child forever. Without Parker having to care for him after we’re gone. We enrolled him at a typical preschool. “I’ll see you at his college graduation”, his neurologist confidently told us.
And then we had the MRI come back this past late-November and were devastated by the news. “Maybe he won’t be able to go to regular schools one day” they told us, but it seemed like something to worry about in the future. We only had to worry about how to get him to speak, what new therapists to bring him to, where to find a good neuropsychologist to assess his intellectual and cognitive capabilities, whether or not we should make the trek to Boston, to Calgary…
And then in early-December we spoke to a neuroscientist that is studying Owen’s condition and he told us that they have only found sixteen people in the world that have this. SIXTEEN. 16. The same number of people in Owen’s “grade” at preschool. It’s so rare, it doesn’t even have a name yet. There is no prognosis.
And then in mid-December, we were told he would likely need a full-time aide to continue at his private, typical preschool next year.
And then in late-December we realized that he probably had to go to the Special Needs Preschool next year.
And then in early-January we realized that we needed to hire a Special Needs Advocate. And we did. And she was forthcoming, and she was helpful, and she was honest. And she scared the shit out of us about the fight we had coming for him. Another goddamn fight for him.
And then two weeks ago we realized that he needs help this year in his private, typical preschool.
And then this week we realized that he probably can’t continue this year in his private, typical preschool.
And then two days ago, I sat there and had to answer “no” to a physiatrist for almost every single question she asked about what Owen can and can’t do that he should be able to do during yet another evaluation. “Can he get himself dressed?” No. “Well what about his socks?” No. “Well what about taking off his shoes?” No. “Can he name a friend?” No. “Will he let you read him a book?” No. “Does he know his colors?” No. “Can he follow instructions with more than one step?” No. “Does he know how old he is?” No. “Does he know he’s a boy?” No. “Can he walk up and down the steps by himself?” No. No. No. No. No.
And then, and then, and then…
And then Scott broke my heart when he said out loud what I hadn’t been wanting to admit to myself – that we need to stop thinking of and treating Owen like the three year-old that he looks like on the outside, and start thinking of him and treating him like the eighteen month-old that he likely is on the inside. That we need to start reconciling with ourselves that he will likely be in Special Needs schools and/or Special Education for the entirety of his education, and that he may well be living with us when he’s a grown man.
And then that made me feel sad, and scared, and lonely. And stupid. Stupid because I keep letting this happen. I keep thinking that it can’t get any worse and that we’ve hit rockbottom. I keep thinking that there is no more bad news to be had, no more ways for my heart to be broken.
I keep thinking that I will find someone who understands how this feels. How it feels to have all of the other parents at a birthday party staring at you and your child because he is hitting you or hitting another child or wandering off or can’t sit on a regular chair without falling off or why you’re talking to him like he’s a baby. How it feels when you walk in and greet the birthday child and the first thing she says is “Mommy, don’t let Owen hit me.” How it feels when you try to explain “gentle” to him and you see his eyes looking right through you because he just doesn’t understand. Maybe someone understands how it feels when you take your son to music class and he is the oldest one there but acts like the youngest. How those stares from the other mothers with typical kids feel. How it feels when as you walk out and try to make a lighthearted comment about needing a cup of tea when you go home, another mother turns to you and says, “Oh, so he isn’t always like that?” with relief in her voice. But he is. He is and he’s mine and I get to spend all of my time fighting for him or making phone calls or drawing up paperwork or emailing doctors and advocates and the school district and the insurance company and having meetings and evaluations and seven therapies a week and then I get to go home with him in the afternoon and all he does is hit me and kick me and throw things at me because he doesn’t know any better.
And I love him. And I resent him. And then I feel shame. And then I feel guilt. And then I love him even more. And then I go check on him at night sleeping so peacefully and cry for him for all that he could have been and all that we could have been and now might never be.
And then, and then, and then…