My son has special needs. He bears the weight of Obsessive Compulsive Disorder (OCD) daily, but I’m not writing this for him. I’m writing this for the all of the parents and loved ones who must learn how to live with OCD as well.
I’m not trying to diminish the burden he carries; believe me, I have seen him crippled by this intrusive, invisible bully, and I wouldn’t wish it on anyone. But I am here to acknowledge the others who are involved in this journey alongside them. I am here to remind you that we, too, face a bully. However, our bully is easily recognizable every time we pass a mirror.
How often have you retreated behind the safety of a closed, locked door and screamed into a pillow?
How many times have you been blinded by the hot tears of frustration as you drive anywhere just to get away?
And how familiar is the feeling of guilt that gnaws at you for all the times that you lost it, yelling at your son out of anger?
The emotional turmoil is unrelenting.
I have slammed doors and punched pillows.
I have felt so much pent up rage that I’ve resorted to hitting my thighs with fists clenched so tightly that my nails have drawn blood, just so the bruises on my legs hurt more than the ache in my heart.
I have escaped the tension with a few too many glasses of wine. And then slept through my sadness.
I have sat outside my son’s door listening to the quiet of him sleeping, pretending that he’s just like everyone else. Enjoying the silence maybe a bit too much.
I have driven to an abandoned lot, turned the music up as loud as I can and screamed until my throat was raw and I was out of breath.
And each time I’ve berated myself with ugly, angry words. The same kind of sharp words I have heard my son use on himself on his worst days as he curls up in his chair, the chair that is off limits to the rest of the family because we aren’t clean enough, and cries until he has nothing but shadows left inside him.
The same words I save for the days when I hate myself most. You are worthless. You are a burden. You can’t even help him. Loser. I can’t do this anymore.
There are times that I think if only I had done this instead of that. Said these words instead of those. Maybe things wouldn’t be so bad for him. Maybe he would be better. Maybe I’ve made it worse.I make myself physically ill worrying over the things that I think I did wrong.
But the truth is that on any given day, I’m doing the best I can. My best may not be perfect, but I. Am. Trying.
There is a song in the Sondheim musical Sunday in the Park with George that really resonated with me one day when I was out trying to walk off the voices in my head that were telling me how wrong I was.
Stop worrying where you’re going –Move on.
If you can know where you’re going, you’ve gone.
Just keep on moving.
I chose and my world was shaken-so what?
The choice may have been mistaken, the choosing was not.
You have to move on.Stephen Sondheim
As parents and caregivers of kids with special needs, it’s easy for us to forget that the best thing we can do is to keep moving. Some days we will move backwards, tripping over yesterday’s mistakes. Other days we will move forward full of a hope we can barely see. But the only thing that matters is that we are moving. We may not know where we are going, or how we are going to get there, but we will get there.
Yes, we are exhausted.
We are overwhelmed.
We are heartbroken.
We are afraid.
We are angry.
But we are here.
We are here, and we are moving.