This has become a sort of motto of mine. It’s a strange one maybe, and one that I think some people might find dire, but in my situation, it’s been the key to me moving forward. And bear with me because it’s a concept that can sound kind of depressing, but I promise you it’s something that’s helped me.
Kieran mentioned in yesterday’s post about how having a child with special needs forced you to let go of that dream you had for them when you held them in your arms at birth.
That’s so very true. It’s a grief that’s hard to talk about. Hard to define. The loss of your child’s future. Of who you thought they would be.
I remember the moment I had to start letting go of the future I imagined for my son. We’d just finished his final autism evaluation. I’d been through it with my oldest and they’d said ‘developmental delay’. But I remember knowing, even as I dug in and denied it, that wasn’t what they were going to say to me after Danger Boy’s eval.
He hadn’t looked at them through the whole process. Hadn’t played with any of the toys. I remember letting them out the door and watching the therapists drive away. And then I sat on the floor with my two year old boy and held him while I cried. And cried and cried. Nobody saw that. I don’t think I’ve ever told anyone (and now I’ve told everyone! hi!).
All I could think of was: He won’t be able to have the job I thought he’d have. Will he get married? Will he have children? Will he be happy? Will he ever look at me? Will he talk?
I don’t know the answer to all of those questions yet. Yes, he looks at me. He talks quite a lot now at five, but other questions? I don’t know the answers to them.
Then a couple of years ago a man I’d been friends with in high school developed a mental illness. His marriage fell apart. He lost his job.
And I remember thinking: you never would have known that’s what the future had in store for him.
Yes, that’s a little depressing, but I turned that over and I looked at my son. My son who I worry about so very much. Who I’m afraid won’t have that future I envision, that future that is, in my mind, the perfect future, and I realize nobody has a guarantee.
A more positive spin on that is that I didn’t know I’d be a romance writer. Not in the least! I didn’t imagine falling in love and marrying at nineteen. I know for a fact it’s not what my parents thought I would do. But I did, and for me, it was the perfect future. But it’s not the one they imagined. And it’s okay.
I look at my son, or at people going through the store with their typically developed children and I get angry sometimes. At the world. At that adorable child who points and says ‘mama look!’ because my son can’t. And I mourn the future again.
Then I remind myself that I have to take it a day at a time. Even if my son were a typical child, (whatever that means) I wouldn’t really know his future. And I don’t know it now. And that’s okay. I’m free to love him today, I can hold him, he’s here with me. He hasn’t ‘lost’ anything, and neither have I.
He’s meant for something great, I believe that with all of my heart. And that greatness may not lie in a future that *I* would consider perfect. But that doesn’t mean it’s not perfect for him.
Saying goodbye to the those future dreams is hard. But they’re an illusion. The child that I have now is real, and that’s where my focus needs to be.
There are no guarantees. But there is today. Today I can hold my son. Today I can kiss him. Today he might say a new word. And if I let the future fall away, I can truly enjoy those moments.


