My amazing son who I'll call J, is nearly three, and was diagnosed soon after birth with a relatively rare genetic condition. We don't yet know how it will affect him as he grows older, but so far he has battled an array of medical problems. One thing's for sure, our little family's life will never be 'normal'...
As J approaches his third birthday, I'm aware of how times have changed in our lives. I've gone from feeling, frankly, like we were one of the unluckiest families in the country, to one of the luckiest.
That might sound strange, but let me explain why I felt so bad during J's first six months.
He had been born with a mysterious, critical illness; went into hospital at birth and stayed there for five solid months, which made him a bit of a legend in the neonatal unit. He was, as I understood it, the sickest surviving baby in the unit which already cared for the sickest babies in the south of England and Wales.
I felt bitter; yes, I did, as I watched the other premature and ill babies come into the unit, stay a couple of months and then be allowed to go home. Five months of my baby in hospital did something to me.
I remember in particular one family coming into the high dependency ward for a few days. The parents were full of happiness; they knew their child was not seriously ill and would go home within a week. At that point I could not return that mother's smiles - or, indeed, smile at all, to anyone.
My son had just been diagnosed with a lifelong, de novo genetic disorder which could affect him in a hundred scary ways. He wasn't 'just' premature and we weren't like the other families in the neonatal unit whose babies recovered. I used to think my son was never going to be 'normal'.
Why us? I used to think. Why did this rare thing happen to our family, and why with our first-born, which seemed to make it so much harder? When all my friends had healthy babies?
On top of the genetic diagnosis itself, J had already been ill and suffered in ways no one else's child seemed to. He'd had a drainage shunt put into his thorax while still in my womb. He couldn't digest milk. His heart kept doing worrying, baffling things, including, once, nearly failing. He couldn't come off the C-PAP breathing machine when he should have - his lungs weren't strong enough. And on top of it all, I wasn't lactating enough, no matter how much I expressed and how much Domperidone I took. Everything seemed against us. I was suffering from severe depression.
I wish I could have known in those dark days that everything was going to turn out so well for J. That the diagnosis didn't mean that the frightening things the doctors mentioned or that I Googled would happen. That, in fact, J would defy the odds - he would do everything late, but he would get there in the end.
He would not only survive but his heart would settle down. He would be able to breathe. He would be able to eat, drink and digest without tubes. He would no longer need any medication. He would have some differences including a chest deformity and being small, but would be extremely sweet, intelligent and also, incidentally, very handsome. That the pain and discomfort he suffered in his first and second years would disappear completely. He would be truly happy and strong, his future would be bright, and life would become good again.
Today I feel we have been stupendously fortunate. J has gone from being one of the sickest babies in the country to one of the least disabled in any group of 'special needs' children.
I can look back now at the neonatal unit days and see it differently. I think of the mothers whose babies were born and didn't survive.
I've seen how extreme prematurity can in itself cause disability as premature babies grow up. I meet other children who have needs far more severe than J's - children who can't communicate; children who will never be able to live independent lives; children who will be tube-fed and on oxygen indefinitely; children who will never be able to sit or walk; children who live more or less in hospital; children who won't make it past adolescence.
Their parents are brave beyond belief. Having tasted just a fraction of what they endure, I know how lucky we are.
You can read previous columns, The Diary of a Special Needs Mum here.
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