When I decided to have children I knew there was always the possibility of having a child with special needs. I have read the stories, and I’ve seen the families at the zoo. In my head I accepted that it COULD happen to me but there was this secret part of me, maybe you have that secret place too, that said: “it won’t happen to you.” Your kids will be perfect, maybe they will struggle with attention or have some epic temper tantrums. Maybe in high school they’ll throw a party. Maybe the worst that you could possibly imagine is something with a cure or a fix that you can all face together, tied up with a pretty little bow. In the deep recesses of my mind, I always looked at those families with pity and sympathy. I didn’t have empathy because it hadn’t happened to me. I barely even comprehended the fear that, someday, that could be me. Naive me, thought I had accepted the possibilities, the “what ifs,” the I-can-handle-anything-thrown-See another child around the same age as mine? Fall into the comparison trap. Fall so deep it robs you of breath. Three months younger and they’re running- using complete sentences. Immediately running through every milestone everyone else has reached that you still haven’t even seen a glimmer of in your own child. The heartbreak. The “why is it so hard?” The wishing. I wake up every day and wish it was different. Can you imagine loving someone so much it hurts but also wishing so much that they were different? That the hand that has been dealt to you had been dealt to someone else? Can you even comprehend the guilt? I don’t want to be this mom. I want my dreams to come true. I want cuddles and laughter and kisses. I want my child to call me “Mama.” I want it so badly that it’s hard to get out of bed every day.
I keep waiting for the wishing to go away. I see these other moms living their lives out loud. They’re vocal. They’re proud. They’re educating. They’re advocating. Me? I feel like I’m silently drowning. It’s exhausting. It. is. not. fair. I don’t want to do this. I don’t think I can. The fear that is ever-present is paralyzing. The fear for the here and now and the unfathomable fear of the future. Who will you be? Will you ever live alone? Will you go to a “normal” school? The questions are unending and no one can give me any reassurance. The worry for my special needs child is enough to drown me, but there’s more to worry about. How will this change my marriage? Does this new future mean we will always have to be the caretakers of our child? How can I survive this and still be a friend? A daughter? A wife? A lover? So far, it feels like there’s no way for me to be anything but this wisher.
Admitting this, even anonymously, is one of the hardest things I’ve ever done. Someone will read it and they will judge me. They will think I don’t love my child. Maybe you think I sound ungrateful for the blessing of my child. Perhaps you will never understand because it hasn’t happened to you. You won’t ever have to wish. I’ll be wishing every day for the rest of my life. Because it shouldn’t be this hard for me and it shouldn’t be this hard for my child. It’s unfair. I don’t want to be a special needs mom, I can’t imagine that there exists a mother out there in the world that does. None of us wish for anything but a life full of health and a bright future for our children. I’m no different than you. It’s just that some of my dreams may never come true.
