Fear and Down syndrome

If you're here to read about fears that people with Down syndrome have, this isn't about that. From what I've observed, people with Down syndrome have similar fears and worries that any other human has, and those fears vary widely. If you want to know what any one person worries about, I suppose you could ask them. Because it's unlikely that it's the same for each person.

I can tell you that right now my Cooper has a fear of very loud noises like a blender or people yelling (he does love the vacuum, though, which I find interesting), but other than that I haven't found any fears for him. We'll see if that changes as he gets bigger.

This is more about my internal, motherly fears. There are many, and I think they can be pretty universal for mothers in the disability space.

When I learned Cooper came with an extra chromosome, I was scared.

Scared for my son, yes. What will his life be like? What will others think of him? Will he be able to walk, talk, go to the bathroom on a toilet, play with other kids, learn to read, eat on his own, stay with a babysitter? These are just some worries for his childhood. There's a list even longer and more complex for his adult life that I haven't allowed myself to think about too much just yet.

I was also scared for myself. What will my life be like? What will others think of me? Will I be able to leave my child with a sitter, especially if he is never able to speak? Or will I be stuck at home with him forever? Will I be able to help my child learn? Will I connect with him? Will my life ever feel "normal" again?

I guess it's a natural part of the human experience, caring what other people think, wanting to feel "normal." And it's not that I obsess over people's thoughts of me. My husband will be the first to tell you I can't match my outfits worth a dang, and I have yet to pay more than $60 for a pair of jeans. I always go straight to a clearance rack, not because we don't have money for clothes, but because I don't like paying for them.

But, Down syndrome? How does that fit in with anything in our lives? With anyone in our lives?

This shirt that I purchased probably 6 years ago comes to mind. Found it on the clearance rack, of course.

My husband always tells me not to lead with fear, but it's just second nature to me. Maybe it's a mom thing, worrying. But even as a kid, I worried. I became rigid and afraid of mistakes. Avoided mistakes at all costs. Perfectionist. Yep. Maybe not in my appearance with my mismatched clothes, but in the way I held myself, in the way I spoke, in the way others saw me.

I say this a lot, but it's so true- Cooper came and changed the way I think about literally everything. Even my fears. He gave me courage to face them head on. Because almost everything scientific you read about Down syndrome says it's a mistake. A whoopsie that happens in the first cell division when an egg and sperm meet. A total fluke.

Is my son a mistake? Does that make me a mistake? How could my body create a mistake? My fear of not seeming perfect glared at me. Challenged me.

I remembered this shirt. Fear. Fear. Fear. It reminds me of how silly fear can be. I can simultaneously worry about failing and succeeding at the same time?! Is that possible?

Yes, yes it is.

It is for me, anyway.

So I'm trying to face fears head on. I'm writing on here to no one really, and yet to everyone. Me, a rather private person, giving light to some of my innermost demons. Because as a mother of a child with Down syndrome now, my life is different. My thoughts are different. My fears are different from most other moms.

My goal in sharing anything is never to get pity. Not to have someone think about how sad things are in my life. I don't need pity. I'm no longer sad in the same way I was when I first met Cooper. I'm a human being working through what life has handed me, same as anybody else. I'm not special for having a child with special needs. It felt like I went through such a huge shift meeting Cooper, but the truth is that change takes a long time to occur. I'm glad for that. I need time to discover this new version of myself.

I want to share a glimpse of our life and invite you into my mind on occasion so you can either relate or gain understanding. Or both. I want the world to see my son and realize not only his worth, but the worth of every person with Down syndrome. It's so important to me that my circle hears about and gets to know Cooper. Hopefully we play some small part in creating a world more accepting and gentle toward people who are different. So I don't have to live afraid of the way the world will treat him. So I don't have to guard my family from the awful, hateful things people say and do when they don't understand something.

Is there fear as a mom with a child that has Down syndrome? Yes. Is there fear as a mom of a child that does not have Down syndrome? Yes. I think we all house fears that maybe we don't voice out loud, even to ourselves.

I think it's what I do with that fear. Do I let it control and consume me? Do I pass it onto others? Do I stay stuck behind the fears and use it as an excuse to shy away from uncomfortable feelings?

OR

Do I see it, call it out, and empower myself? Do I talk about it and find solutions? Do I step out of the darkness and allow the uncomfy in order to gain love and understanding?

For the sake of my son (and really for the sake of anyone around), I'll keep trying to use fear as a catalyst for change. As a vehicle to move toward acceptance and love. Because I know fear won't completely go away, and I'm so tired of staying stuck in a place of fear. So tired of hiding behind it and wondering what life is like on the other side.

I used to think fear was my friend in a negative way. The one hanging around, whispering passive aggressive comments about how I'll never be good enough.

But now, I'm trying to see fear differently. It is my friend. The one who challenges me to look outside the box and think differently. The one who pushes me and likes to see me grow.

I'm happy Cooper came and forced me to look at myself and my fears differently.

Come on over, fear. Let's hang out.