Just Keep Moving

*This post is honest. It is painful to write, but I feel that it needs to be said for those who can’t say it.

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Jake on a very bad day

My son bears the weight of Obsessive Compulsive Disorder (OCD) daily, but this post is not for him. This post is for the parents and loved ones who must learn how to live with OCD as well. I do not wish to take away from the burden he carries; believe me, I have seen him crippled by this intrusive, invisible bully and I wouldn’t wish it on anyone.

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Half a day’s worth of gloves

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.

 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.

 

 

 

 

 

 

This House Is Not a Home

 

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There is a place I know that feels a little too much like home. It’s a house of mine I rent from time to time, but it isn’t home. I’ve visited it so many times that I know it well.

It could easily become my home – if I let it.

But that is something I won’t do.

Each time I visit I struggle to leave; there is a familiarity that is comfortable, like a warm hug. But that hug quickly becomes a smothering embrace, threatening to dissolve me.

I go to this place kicking and screaming, fighting against it, and yet, I continue to show up.

I don’t like this part of me – the part that visits this place. But the older I get the more I realize that it’s just who I am. I am a person who lives in two separate places at any given time. I am a person who puts on a smile while I am at my home (as much as I can), but who wears no masks at my other house.

The other house is a house of darkness where no masks are needed because there is no one else there to be bothered by my countenance.

The other house is desolate, lonely, and dark. Hardly a place that a person would choose to visit. Instead, it seems to choose me. In some kind of Amityville-esque way, it haunts me and consumes me.

Thankfully I have a home – a real home – filled with those I love who wait for me. I worry that one day they will choose to close the door and leave me stranded in the echoing hallways of my other house, having grown tired of my extended, and frequent vacant-tions.

Here’s what I want them to know.

I see you trying to figure me out and help me and “fix” me. And I am grateful that I mean that much to you, but there is nothing you can do. The darkness is in me, and I am the only one who can fix the broken switch.

And I. Am. Trying. This is not a place I want to be. Know that. Above all else, know that.

Being who I am I feel too much. I think too much. I bruise too much.

Sometimes life is just too much, and I feel like I’m suffocating.

That doesn’t mean I want to die.

In fact, it’s just the opposite. I want to live. God how I want to live.

I want to be the free spirit I am. To explore and dream and create and shine.

But there are moments in my life that break me. And these are the moments that send me to my house to be still. To retreat. To repair.

I am here.

Though I may be far away, I am here.

Though I may be there. I am here.

Wait for me. I am here.