WHAT IS CEREBRAL PALSY DIPLEGIA ANYWAY?

Trying to understand Isla's diagnosis was pretty challenging at first, especially as her neurologist didn't actually mention that diplegia is a form of cerebral palsy. So that was a shock when we wound up on Google to do a bit of research.
Mostly I think I understand things now, at least the how it happened and a vague and general idea of what Isla's development and mobility will be like ish.
Trying to explain to Dylan proved to be a lot harder than I had anticipated, we ended up having quite a deep conversation about how, if Isla's brain was a bit hurt was it not hurting? And was I sure it wasn't hurting? Which if I'm honest sent me into a mild panic because those are questions I cannot answer because the answers we've had thus far go sort of like this "maybe", "I don't know", "we can't tell", "it's possible", "blah blah blah".
So I'm trying something new, something simple and factual that hopefully captures the imagination enough for the information to sink in.
I made a comic.
I was going to call it Diplegia for Dummies but decided against that last minute so for now it's just the answer to the question: What is cerebral palsy diplegia anyway?

ISLA'S DISABILITY FEELS NORMAL

Sometimes I forget I've already raised an able bodied child. Which is not to say I forget Dylan, but just that Isla's disability seems completely normal.
Normal is a funny word because it has so many negative connotations attached to it. In this case there's nothing wrong with normal and I'm not saying disabilities are abnormal. Normal is just how it is, how it's been, what I know and I haven't known any different.
Except of course I have.

Dylan was walking before his first birthday and when he walks he walks normally. His range of movement is as it should be with no catch or paralysis coming into play. When I look at photos of him walking his stride is always normal.

In comparison Isla has never walked normally. She has a full range of movement but can't use it when walking. Her stride isn't normal although you can catch a photo where it looks as if it is. She stomps. Because she can't swing. And there's nothing wrong with it at all, in fact the only time it seems to pose a problem to her is when she wants to wear a floor length princess gown and the hoop skirts get a bit in the way. Disaster.

But Isla's stride seems normal. The fact that she can't jump seems normal and that she's almost three and still relatively unstable. Even when I see her with other children her age and her disability becomes very apparent in contrast to them, she still feels like my normal.
A lot of the time I struggle to remember having a child who could run and jump and kick. And the fact that Dylan does now (of course because he always has) doesn't seem to change the fact that I can't really remember him being an able bodied toddler. Not that I look back and picture him with Isla's disability.
I suppose that's a good thing really because I suspect that if I could remember to compare I would be pretty sad. If I could compare the things that Dylan could do and how much he enjoyed them it would upset me a whole lot more that Isla can't and maybe never will. It's upsetting enough that she can't jump in puddles when she really wants to, it's worse now I'm thinking about a three year old Dylan doing it.
Maybe that's why I can't remember. A combination of self preservation and motherly protection over Isla. But then I feel guilty and resentful. Guilty because I'm struggling to remember Dylan as he was and as a mother I should do better than that. And resentful towards cerebral palsy because it shouldn't
be here in the first place let alone be interfering with my memories of my son. Hasn't it already barged in and done enough?

Now I've typed that out I think maybe angry is a better emotion. It's not just memories I'm struggling with but emotions too. So many of the all geared towards cerebral palsy. The aforementioned anger over its unwelcome presence, at its looming threat to interfere with Isla's dreams and happiness. Because life is hard enough without a (possible)wheelchair, and having to plan journeys in extra detail, and having to do extra extra work with schools and ballet teachers and whoever else. Life is hard enough without having to explain to people what's wrong and why and what it means especially if they're judgemental or difficult. The sadness when I see how much she loves ballet right now and knowing that it might get in the way of that or anything else she might love, or when I think of the fact that it's just not fair at all. I'm sad for her. The guilt, so much guilt. And now this new guilt because I've realised my memories of Dylan seem further away. But then I have guilt because I want it to go away, I don't want it to be a part of her future but if I take it away I take away part of her. And she's perfect as she is. Fear because I'm scared of getting it wrong with Dylan but Isla is different and she's going to need more and what if I'm not enough? What if I get it wrong with both of them because I can't get it right with Isla? There's frustration, heaviness, impatience, hope, despair, confusion........

Isla's disability has changed so much, it's changed me and it's changed how our family work and think and maybe how I remember things.
And this is probably the least of my problems, not being able to remember raising an able bodied toddler. But it feels like a big deal right now.
Everything feels a little raw and extreme right now because it's so new or at least the finality of it is new. And these little things are unexpected so when they happen I have no idea how to deal with them or if I even have to deal with them. Is my faulty memory a problem or am I making it a problem? Or is it possible that this is just a thing that happens with second children? It's not as if I've done this before to compare.

But like I said, it makes this easier, I've always sucked when it comes to comparing milestones and party tricks. And anyway it's not as if I've forgotten Dylan or any of the important things, nor the funny moments or the things he taught me or surprised me with. I still have my memories and about a million photos to go with them, I've just forgotten my old normal. I have a new normal now, we all do, it's just learning how to adjust to how I feel about it that takes a little work

   

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.

    

DEAR ISLA

It's been so long since I last wrote to you this way that it feels as though I'm writing about a different child. I'm not, of course. You've just grown and changed so much over the last year or so that I struggle to even remember how you were before now. It's funny how that happens, with time all the milestones and stages blend into one and it seems impossible to imagine you being any way other than you are now and harder still to imagine a future you. Although now I think that may also be because your future is a little more uncertain than we thought now.

Recently we got some news. I'm inclined to say bad news but upon reflection I've decided that all news is just news neither good nor bad and our own take on it will dictate how we feel about it. I don't want to feel bad and I don't want you to feel bad so by any reasonable logic I should lead by example. While it's still to be made official at your recently neurology appointment you were diagnosed with diplegia and that leaves us with as many questions as the appointment answered. Some of them about the diagnosis itself and what it actually means but mostly about what it all means for you and your future.
As a parent I've been worrying about your future since you were just a blurry little spec being pointed out to me by a sonographer (and if I'm honest I'm not sure I could even make you out despite smiling and nodding along happily). And despite the fact that we've spent over a year now knowing that something was wrong (again! I'm starting to dislike my limitations within the English language. I'm so negative!) we didn't know what or why or how and it was very easy to hide behind your progress in physiotherapy and ignore the prospect of it being long term. Because long term presents itself as a worry for your future and most importantly for your happiness.
And now I've found myself talking about this when our year has been full of so much more, our days are full of so much more. Although in a way also shaped by your disability.

You go to nursery now, your paediatrician suggested it and wrote the relevant paperwork to get you this special place. Your disability gained you this opportunity but it doesn't hold you back in the slightest. You've been making friends in a way that fills my heart with so much joy when I witness it. You run and play with them and they slow down for you if you start to fall behind, the give you extra chances to kick balls and more time and patience while you climb the slide. They behave differently with you but only so they can treat you as an equal. Maybe I'm looking too far into it because you're all only two, but I see it, and it warms my heart.
This is something that we've worried about, me and your dad. We worry about you being left out or left behind or made to feel different as if there's something wrong with that. But between you and your new friends you give me the confidence that I've been struggling to find within myself.

You, my darling girl. You're so strong willed and resilient. You emit so much life and energy every day, exploring the world and challenging yourself. Pushing yourself to keep fighting to do what you want. When you wanted to dance you danced and twirled until you could do it without falling over. When you wanted to run you picked yourself back up over and over again until you could chase after your brother, and although you still can't catch him you never stop trying. You're learning to swim and jump and both are progressing far faster than I had expected and I know that that has nothing to do with me. Of course I'm here, always. And of course I'm holding your hand if you need me and I'll always be giving you support and encouragement but it's your will, your determination and your passion that are propelling you forward.
And you're moving forward swiftly in your own direction, which is currently swayed towards glitter, wands, tutu's, princesses (Elsa and Anna in particular), singing and lots of jewellery. I'll admit this is not exactly what I envisioned when I pictured having a daughter, I still can't do a French braid and buying dresses adorned with Elsa's face makes me weep a little internally. And yet watching you bloom I know that I wouldn't change a single thing.

When we got our news I cried because it wasn't fair. I cried for the opportunities that you may not have and the dreams that may be squashed before they can develop because limitations can dictate reality. I was sad for you and oh so angry at myself because I want to give you the world and I had failed you.
I'm still sad, because it is sad news although we still don't really know what it all means. But I know I have no reason to cry anymore. You are who you are and your are fabulous. And if I took away your disability I'd take away all the parts of you that you've built within yourself to push past it. I'd lose the parts of you that inspire me, give me hope and make me so unbelievably proud every day.

I'll love you always

Mummy