Disabled or strong?

 

May 1975.  My life started pretty straightforward, home in a matter of days after being born destined for toddler-hood blighted only by the dozens arran knit cardigans and jumpers that my gran used to make for me and the inability of my mum to see beyond a pudding bowl and a scissors as essential hair dressing equipment.  Aside from that it was days at play group, plasticine, fuzzy felts, Bod and Mr Benn. Similar I’m sure to pretty much most toddlers of the 70’s.  Happy, lucky and oblivious to most things that didn’t include either food, watching Rainbow or lego.

That’s how you should remember your earliest memories and why not – the closest i’d ever come to trauma was probably losing a teddy.

Isaac’s is now a toddler.  His life was uncomplicated for about 26 weeks, whilst he bobbed around in mummy’s womb with his twin brother.  But then it got complex.  He struggled to swallow amniotic fluid, his scan photo’s weren’t the sort to post on facebook and go ‘awwww’ – they were to check he was still alive.  We as parents had to get to grips quickly that there were complications – he had no idea.  We has to understand when the obstetrician said on the 1st September 2010 that he needed to be born, 2 months early – he knew nothing about it.

At 4.44pm on 3rd September he found out.  In seconds he went from being comfortably unaware to being in a bright noisy operating theatre, fighting for life.  Unable to breathe for at least 2 minutes, fading away, before doctors managed to force a tube down his throat to ventilate him.  Being whisked away without even making eye contact let alone a touch with mum or dad into neonatal intensive care with his healthier twin brother.

Spending 5 weeks fighting for every breath, straining to get enough oxygen in but not always succeeding.  Not being able to have a cuddle for days at a time. Lying, lights from machines and bleeps from pumps and ventilators the only stimulation in a world he could only see through the plastic of an incubator. Having needles in hands, feet, tummy and a blood test every few hours for weeks. Being unable to move aside from when a nurse did it for him.  Not being able to have his first bath until weeks old.  Having 3 more occasions over the next 8 weeks where his airway closed and he needed resuscitating urgently by a team of worried doctors and nurses.  Having to undergo tracheostomy surgery before he’d managed to have his first taste of food, or had said his first word.  To still, 3 years on, not have swallowed solid food or spoken a word. To have nothing but liquid food and then to have it poured through a tube to his stomach whether or not he is hungry. To have to be medicated with 4 different drugs each day.  To have no idea what it is to walk, let alone hare around like his twin brother. To only be able to play when someone takes the time to play with him.  To hear (as he will now) doctors saying that he has a ‘very abnormal brain scan and not as much brain as there should be’ – he may not understand the words but he can see the faces and feel the sadness in the room. To endure, like he is today, chest infections that are so much more tiring and hard to fight when you have a tracheostomy.  Going to conductive education twice a week to have 4 hours of therapy that knackers him rather than sitting watching ‘Team Oomizoomi’ or ‘Jake and the Neverland Pirates’ with his brother not to mention physio, osteopath and outpatient appointments. 

Isaac’s 3 years so far have been one constant effort for him.  Not the carefree, happy 3 years I’d had or perhaps anyone reading recalls from their early years.  Subjected to that sort of 3 years now as adults, i’m sure most of us would end up questioning what we’d done to deserve it before unravelling and resigning to a life of despair. 

But how does Isaac see it? Who really knows.  As I look over to him right now and make eye contact and he smiles back I think, or I hope, that he doesn’t think he’s had a horrific existence so far.  We can only do our best to make him know he’s loved, more than anything on the planet in the same way his brothers are (though they do have a remarkable tendency to test that love to the extent of me threatening everything from phoning Father Christmas to considering if it’s legal to list them on eBay). Beyond that what can we do. That’s part of the process of getting used to having a child with disabilities ; to move from despair about being unable to do any more than that and towards accepting it. 

Isaac, like anyone, doesn’t carry a card round his neck with the story of his first 3 years on it.  He can’t let people know what his experiences have been – the fights he’s had.  All he can do is hope that people empathise to see beyond the little boy with a trachy and obvious muscle tone problems in front of them to see the fighter inside. 

Isaac is stronger than me, way stronger.  Is Isaac disabled? It says so on his medical notes, his parking permit and most other places and medically, yes he is.  He has needs like we all have needs, they are just different than those his brothers have, and more of them but he is also an inspiration.  He has achieved more simply by surviving the first 3 years than I’ve achieved in my life or ever will, and he continues to progress and show a spirit and determination that I didn’t think existed in anyone until he was born. 

Most of us can hide our frailties or things we can’t do – we either avoid the things that expose the weakness or spend years hiding it.  Think how life would be if the things you can’t do were the first thing that anyone noticed about you when they first met you? Would you feel it’s fair? Would you feel accepted? It’s somewhere in those feelings that the Izzysbusy campaign to get people to see past disability were born. Together we can get people to see the child not the disability ; to see that ‘disabled’ can mean strong not weak.

4 thoughts on “Disabled or strong?

  1. What a truly wonderful post. I relate to so much of this. A friend said to me the other day that they didn’t know I got through the week sometimes and commented on how strong I was. Like you, I think that you can’t even know the meaning of the word strong until you meet kids like Isaac and Boo. They have determination and character in a way most people can’t imagine. And you’re so right that the term ‘disabled’ is so utterly inadequate a way of describing them. Your campaign and this blog will help people understand that.

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