I DONT WANT MY DAUGHTER TO BE DISABLED

It's difficult to talk about how I feel about Isla's disability without sounding prejudice or discriminative. When my emotions clashed with my morals and world view I found it difficult to articulate exactly how I felt because so often I'm contradicting my views and opinions on a very basic level.
It's taken a little while for me to realise that it's ok. And also that I'm not suddenly an awful person for saying that part of me is devastated that my daughter is disabled because that is one of the last things I would ever want for her.
See, that sounds harsh.

Fact is, I am legally disabled. So in a sense I suppose I have some insight into how her world will be although it's extremely different on a multitude of levels. Thank God.
I hate my disability. I resent it. I am angry and bitter more than I care to admit. I hate my disability. I hate the limitations it gives me now but more than anything the things it took away from me. And more than any of that I hate how invisible it is. I hate how people treat me both before and after they find out I'm disabled if they think I'm trying my luck jumping a queue or selfishly taking up a priority seat in a bus.
And I hate that my daughter has a disability. Because while there is nothing wrong with disabilities it is not what I want for my daughter.
Of course I don't want her to grow up in a world full of more limitations. It's bad enough as it is. We can work around them, and of course we will. But I don't want to have to work around them because I don't want her to have them. I want her to feel limitless not limited.

It's unfair.
It's really unfair and that makes me want to kick and shout and break things because I am a mother and God forbid anyone hurt one of my children. Or take something from them. Or hold them back or stop them or try to dim their light.
Most of all it makes me want to cry. But I'm scared that if I start there's a very good possibility I won't stop because there are reminders of my fear and my guilt everywhere.
At Isla's ballet lessons, where she doesn't seem any different now but in a few years when they're no longer two year olds with no grace her disability might hold her back. And then what?
Or when she tells us how she's going to run "So fast Daddy!", and we agree but somewhere in the back of our minds there's a voice that pops up (I'm hoping this will go away after a while) that
reminds us that while its hopeful that she will be able to run it's unlikely she'll be fast, or able to keep up.

    

My experience with disability is different. Isla was born with Diplegia Cerebral Palsy, it will always be there as something that builds her character, helps her grow as a person but also limits her in some ways. I wasn't born with my disability, I was fourteen and my body stopped working properly. My disability changed my life and took away a huge part of my identity. Being told that if I continued to dance I would end up in a wheelchair by twenty five put an end to so many of my dreams that I floundered for years afterwards not knowing how to cope. It left me angry and bitter and constantly at war with my stupid broken body. It's really only within the last year that I've accepted it properly and allowed myself to let go of the negativity and resentment I held towards myself.
I can only hope that growing up with her disability Isla will avoid this anger. It crushes me to imagine that she would ever feel such an intense hatred towards her body, or that she may feel that she or it is broken.
I hope that she will never feel that people are proud of her accomplishments in spite of her disability. And that no one will view anything she does that way.
Or treat her as anyone less than she deserves.

Maybe that is partly why I don't want my daughter to have a disability. My own experiences leave me fearing for her happiness.
But even if that weren't true, I still wouldn't be OK with this.
I would still want to kick and shout and break things. And cry.
It still wouldn't be fair.
It doesn't matter a single iota how I view disabilities. Or in fact how I feel about them. Because when it comes to my daughter there's all this anger, frustration and guilt.
And sadness.
I'm not ok with it yet.
That's difficult to admit.


But I also wouldn't change it.
If I take away her Diplegia I don't know who I'll be left with.
Isla's disability doesn't define her in any way shape or form but it is part of who she is. It's part of what makes her unique.
Part of the makeup of her personality which is A*.
She's strong, resilient, determined, focused and smart.
Her sass and cheekiness keep us on our toes almost as much as her flair for the dramatics. The only person I know who's more dramatic than Isla is her brother.

     

If I dive in in my Super Mum costume and try to fix things, try to right these perceived wrongs and help level the playing field once more by taking away her disability I'll lose some of that spark.
And that's hard. All of it's hard. Writing this post was hard. Especially because figuring out how I feel is hard.

But I need to practice a little patience (this is really not my forte. Patience is absolutely not a virtue, I don't like waiting and uncertainty, it makes me anxious). All of this still has a rather large question mark hanging over it. We won't know until the time comes what Isla's limitations will be. We won't know until the time comes that her dreams and passions will be. We don't know and there's really no point in guessing.
For now we're adapting out life on the small ways we can to make things as easy as possibly for Isla while not stepping on Dylan's toes.
I hope that it will get easier. That the anger and sadness will fade and I suppose it's inevitable that it will.
But I don't think I'll ever really be ok with it. But that's ok.
Because I'm her mum and I want to give her the entire universe and nothing will ever be good enough when it comes to what I want them to have, their happiness, their freedom.
I don't think I'll ever want my daughter to be disabled.


But I'm at peace with it.

Anyway, nothing could ever change how much I love her.