*This is a work of nonfiction and opinion based on actual events I experienced firsthand; used with permission.
I love my daughter.
I love my daughter more than I love anyone else in the world, and I feel the need to preface this post with the assertion that my love for her never wavers, despite the feeling that I have toward her which swirl around my head like little tornadoes; and change daily based on her behavior and how our relationship is shaking out from day to day.
When you have an autistic, Intellectually Disabled teen, you never know what you are going to get from one day to another.
Some days she seems like a typical sixteen year old, some days she seems like the atypical eight-year-old I feel like she is deep inside, and from day to day, from moment to moment as her mood and behaviors change, it’s hard to reconcile who she is, or what she will become as she grows older.
We press on through the days, and I worry as each passes by that I haven’t done enough yet to set her up for the future.
I have two years to get her set up on disability, without which I don’t know how I will care for her for the rest of my life.
Because that is a given — I will be taking care of her for the rest of her life.
I think of my parents getting older, and my grandparents.
How eventually, the younger generation starts taking more care of the old.
But I won’t be taken care of by my daughter when I’m old.
I’ll die still taking care of her, and there’s nothing I fear more now than early death, because who will be there to take care of her when I am eventually gone?
I love her, but I’m devastated that she is this way.
I’m devastated that I have a disabled child that I feel like I don’t have the capacity to care for forever.
After sixteen years, I’m already fatigued by it.
I’m sick of it.
I wish all the time that things were different — that she was typical, and not disabled, and sometimes, a lot of times actually, I mourn for the typical child that I wanted and didn’t have.
I ask myself, does this make me a monster of a mother, to wish I had had a different child?
I’m filled with guilt and shame over my feelings about this, but still, I think, no.
I’m not a monster.
I’m probably normal.
No one asks for this.
I don’t think there’s a single mother out there in the world who goes through their pregnancy hoping that their child will be disabled — why would they?
There’s nothing harder than watching your child struggle so hard and fail so often at things that are so easy for typical children.
The people out there who adopt disabled children — they are saints of a different kind.
I am not like them, but I often wish I could be.
Instead, I mourn for the typical child I didn’t have, and feel crushed with guilt that these feelings are passing through my head when I look at my daughter and feel nothing but love, and, honestly, a little bit of sadness.
What did I do to deserve this? I ask myself sometimes.
As if her disabilities are a punishment.
Meanwhile, I hear people say trite things like:
"God doesn't give you anything you can't handle."
And all I want to reply with is, “Oh yeah, then where’s your disabled kid?”
I was not meant for this, but this is what I have.
The truth is, I never wanted to be a parent at all, but when I got pregnant, for some reason, I couldn’t imagine having an abortion.
I thought to myself, “I’m old enough to do this, I’m in a good place, I can do this.”
But not a single bone in my 23-year-old body believed that I would end up with a disabled child that needs more specialized care and attention than I feel able to give.
If I had known then what I know now…
I love her. I love her. I love her.
But she is not the child I wanted, and I often find myself mourning for the child I didn’t get.
I see typical kids her age, the ones that she went to elementary school with, beginning to bud as teenagers into mini-adults while my daughter still clutches her stuffed bunny wherever she goes, and sometimes I have to hold back the tears because I wonder whether that bunny will still be coming with us when she’s eighteen, or twenty.
I know that other parents of typical kids are planning for colleges and I’m researching group homes with the lowest levels of reported abuse.
Eventually, other parents of typical kids will be empty nesters, ready to explore their lives after children, but my child is forever and for always, and there’s no getting away from that because she is just not growing up.
The sadness I feel over our situation goes beyond depression.
It’s a soul-sadness, a darkness inside me that eats away at me slowly and meticulously because I feel bad and evil just thinking these thoughts.
I love her, I love her, I love her.
But there is something inside me that can’t help wishing she were someone else, and I don’t know how to get past that guilt.
But should I feel guilty, or is this normal?
Like I said, I don’t think anyone WANTS to have a disabled child, but how many people are willing to admit that?
I have to say this, I have to admit my truth, because if there is one more parent out there who feels the same way, they deserve to know they aren’t alone.
It’s okay to mourn the child you didn’t get.
In fact, I bet it’s normal, but no one wants to talk about it.
I refuse to believe I am the only one out there who feels this way, who wishes she had a typical child and not a disabled one.
I refuse to believe I am evil for wishing our lives were easier and that the future was brighter for both of us.
This is just life, my life as it is, and I have to find a way to accept it, but that doesn’t mean I always have to like it.
It’s okay to wish things were different.
It’s okay to want a better life for yourself and your child.
But it’s not okay to deny the feelings that you have and keep them bottled up and hidden when you’re hurting inside and looking for a little bit of understanding.
I know I can’t be alone, here.
We love our disabled kids, don’t we?
But I would be hard-pressed to believe that you didn’t want things to be different if you had the chance.
Kids are a total crapshoot, aren’t they?
You never know what you’re going to get.
But you love them.
No matter what.