I have discovered something about myself.
I’m angry. Very angry.
And I hold it all in and turn it on myself. I’m so mean to myself in my head it would probably make you cry.
It makes me cry.
And I think most of my self-hatred is due to all of this anger. I’m a kind, compassionate person who refuses to expel her anger on others…so where else could it go but inside?
But I’m trying to truly love myself and, therefore, I need to express my anger somehow.
I am so angry at Cri du Chat syndrome. Even though I love my daughter, and all that comes with being her mother, it doesn’t mean that I’m not angry about it. I try to be positive, and I’m really thankful for all of the wonderful things she’s brought to my life, but it doesn’t mean that I’m unaware or don’t feel all of the shitty parts also.
I’m angry because everything for Olivia is a struggle. It’s not fair. She has braces on her teeth, glasses for her eyes, scoliosis brace at night, still wears Pull-Ups, can’t communicate very well, can’t ride a bike, can’t hang out with friends, the list goes on and on and on and it’s so frustrating. It breaks my heart every single day.
She doesn’t have friends. She doesn’t seem to care but it makes me so sad and, frankly, angry too. She is amazing and sweet and hilarious and fun to hang out with. Why wouldn’t someone like that have friends? Because she’s “different” and that just sucks. I love hanging out with her, her brothers and family love hanging out with her, why doesn’t anyone else? Why does she eat lunch alone?
School for Olivia hasn’t been going very well. We are battling a bit. That makes me ridiculously angry. It’s unfair that someone as precious and vulnerable as Olivia has to endure anything but perfection while at school. I’m sorry, but that’s how I feel. And I’ve told you before, I’m ok with being that mom if I have to. But, damn, it’s exhausting. And frustrating. And heart wrenching. And makes me angry. Why does it have to be so hard?
I’m angry because she’ll get her period soon and won’t understand why or how to handle it. I’m angry because I’ll have to handle it alone. I’m angry because I think I’ve had enough of that kind of bullshit to last a lifetime and I think I should get a pass on this one.
She won’t get married, won’t get her license, won’t go to college, won’t live on her own, won’t have children, won’t do so many things. It’s so unfair.
We have to take her wheelchair/stroller everywhere we go. Grocery shopping is getting to a be a real challenge now that she’s getting bigger. Everything is! There’s no quick stops to the drug store or the grocery store or the library. There’s no leaving her at home alone even though she’s almost 14.
And for me? I’m exhausted. All of the time. I constantly worry about her. Matt and I have to work so much harder at our marriage because of our stress thanks to her syndrome. Every day is hard. You’re never “off” when your child has special needs. Ever. And the thing that makes it even more difficult? It never ends. Sometimes when I hear people complain, I just want to scream. Maybe they’re complaining about potty training or not sleeping or not being able to go out to dinner and I just want to explode because it’s temporary for them. Eventually their child will use the potty. Eventually they will sleep. Eventually they will grow up and have a life of their own. But not Olivia. Our struggles are never ending. It’s not temporary. It’s forever.
And, yes, trust me, if you’re a regular reader you know that I love my life, I am positive, I always look for the silver lining. But, as stated numerous times in The Fault in Our Stars, pain demands to be felt. And the longer I hold it in, and pretend it’s not there, the worse off I am.
So I’m seeing red. Lots of it. I’m angry.
There. I said it.