"So, is your daughter developmentally delayed then?" asked someone who had not yet met my daughter but knew she attended an additional needs school.
"She is yeah."
Surprised by how at peace with the whole thing I currently am.
"So, is it autism she has?" asked the man.
"No, she has cerebral palsy" I respond, trying to still sound upbeat.
Whenever I say "she has cerebral palsy" I see the person's face transform from candid and conversational, to pitying and empathetic.
It's a natural reaction I suppose, and maybe a reaction I too would have given, had I been that other person but a few years ago.
You know what though?
Sure, I often wonder how it would be if things were different.
I also wonder how Amy feels about it all; after all, it is her dealing with the diagnosis primarily, not me at all.
I hate the pain she has, I hate the challenges she faces daily.
But my child is not a problem waiting to be fixed - actually, the world is a problem that is waiting to be fixed!
People's attitudes need fixing, accessibility issues need fixing. My daughter is changing for no one, but the world can.
The person enquires further about the diagnosis.
"Sooo... does she talk?" the person asks.
"No. But she communicates in her own way, and we've been trying to help her in every way we can... she does really well to get her message across."
The person looks deflated. To them, speaking verbally is everything.
I've said it before and I will say it over and over again - communication is not just verbal. It is body language, facial expressions, sounds, all sorts.
Amy has been lucky enough to get regular sessions using eye gaze technology. We are very early stages at the moment but so far, she has worked out that if she looks at the radio on the screen it will play music. When she looks away, it stops. Genius. Never underestimate the energy and mental concentration this takes. Even for people without visual impairments or compromised motor function - this is tricky and very tiring.
"Does she walk?" the person asks nervously (knowing too well that the answer could be a no, and not being prepared for that answer).
"No." I reply. I explain that one day we hope to use a gait trainer and that Amy can explore her movement more independently.
Right now, a lot of work is being done every day by many people to get her stronger and stronger.
She works hard every day trying to control her movements and to become purposeful with them.
The one that tends to shock people the most is the answer to "does she eat?".
Nope... tube fed, 24/7.
To make light of the situation I joke about how actually she is one of the only people I know who is on a 100% nutritionally complete diet, getting every vitamin and mineral she needs.
I also joke that she is more efficient than us "oral eaters" who waste time constantly cooking and eating... she has a feeding pump that drip feeds her all day long, leaving her free to focus on bigger and better things.
The response to all of this is "she will walk one day... she will talk too... I know it".
I think sometimes people say all of this with a degree of certainty because in their mind, they can't stand to think that she is suffering or in any way deprived.
It makes us feel better to think that all of those things will one day go away and magically one day she will come running out of the house with fistfuls of sweeties to go and play in the street with her friends.
Sorry to burst your bubble friend, but I don't think that's going to happen.
Can we please stop seeing my little girl with her feeding tube, wheelchair, splints and so on and taking pity?
From knowing Amy all of her life, that girl does not feel sorry for herself.
She gets frustrated sometimes by her limitations - but don't we all?
She has lots of friends who love her and who she loves.
She has a dedicated team working with her every single day to help her achieve her optimum and ensure she experiences as little pain as possible.
I have plenty of days where I dwell and think about what could have been.
I regularly relive her birth in my mind, over and over. I agonise over it a lot.
But that's me and my baggage... not hers, and not yours.
Every day I am so thankful that she is here.
It upsets me to think that there are people out there who don't feel she has a quality of life.
But I have given up trying to justify her place on this earth, this place that she fought harder than most of us to secure.
Because without her I wouldn't have found a new profound meaning to life, she has validated my existence beyond belief and sometimes I have to remind myself just how far we have all come and just how lucky we are.
There was a time too when I naively thought that all of a sudden speech and mobility would happen.
But eventually we all began to lower our expectations, not in a negative way, but in a way that we could all set achievable goals.
If you had told me this time last year that Amy would be able to use an eye gaze system, or that she could wave to people or high five them... I wouldn't have believed it.
Not because I don't believe in her... because I do... but because at that time we were working so hard trying to help her various medical issues and so on.
On the opposite end of the spectrum there are those that use our children's successes as "Inspiration porn". By that I mean for example, a picture of a child using a walking frame and smiling is captioned "if he can do it - we all can!".
This is actually derogatory and degrading. We need to find a balance. We shouldn't be using the achievements of a person with a disability to give us perspective as in "at least I don't have it that bad... if he can do that then I can do .... " and so on.
We all have differences, we all have different flaws, we all have different abilities... some more than others.
The best thing to do is be thrilled are all here together as part of this and work together to build happy lives.
We don't need a magic wand, we need inclusion, accessibility, acceptance and awareness.
Yes, an MRI scan would tell you that she is severely brain injured - but what it would not tell you is her unique hobbies and interests, her incredible personality, her gorgeous looks and cheeky smile.0
We don't all want to be pigeon holed or pitied.
Just a little note to say by the way - this post is written entirely from my own perspective.
I realise of course that I am not the one with the disability, I speak only from encounters I have had with my daughter there, I don't want people to think I am telling this from my daughter's viewpoint or talking for her... she may indeed have her own take on it that I am not able to extract!
I am mindful when I write these posts that they could be taken out of context or not received how I intend them.
Personally, I have a few sometimes-debilitating medical issues and I too don't expect sad faces and empathy, just help when I ask for it and friendship.
The goal of this post is to tell the world that we should celebrate everything we can and live life to the fullest no matter what we have going on.
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