Dear Doctor

Dear Medical Professional, You will ask about his medical history, And I will repeat the story I have told 100 times or more, The details fine tuned to the essentials I know you need: He was born full term, He has a 7 year old brother who is fit and well, He is allergic to penicillin.  You will ask me what happened, And I will answer: He is 6 years old. He wasn't breathing for 7 minutes. I gave him mouth to mouth. I will hand over a careful typed piece of A4 paper. It will tell you his hospital number, The things he is allergic to, A list of medications and doses. You will take it and smile. You'll tell me I make your job easier. I will stand calm, And in control.  You see my demeanour, my hospital bags packed and ready, And you say, You've done this before. I'll nod and say many times. But remember this; That 6 year old is my baby. That boy with the oxygen, And the wires, And the tubes, Is my son. I watched him turn bl

Party time?

Little H went to his first party today.  I mean, he’s been to parties before of course, but this was the first time he had specifically been invited to a party, not just because I’m friends with the parents of the birthday girl, or because his brother has been invited.  This party was just for H.  He even had his own individual party invite.  I was very excited.  This party was the third birthday for one of his ‘friends’ at the sensory play group he goes to once a week with his carer.  They had invited all the other children from the group too.  I was looking forward to meeting the parents properly – most of whom I have only chatted to in passing, but more than that I was looking forward to a party where H would fit in.  It was at a Wacky Warehouse/soft play type area so although not entirely appropriate for H, I knew no-one would look at me oddly as I encouraged him to hold the balls, or lie down in the ball pool.  I knew that no-one would question why I was carrying such a large child around and why he wasn’t going down the slide or running round.  They had thoughtfully asked about food for H and had just ordered an ice cream for him.  There’s another tube-fed child in the group and I knew it wouldn’t seem odd when I pulled out his pump and giving set and hooked him up to a feed while most of the others munched on sausage and chips and that no-one would frown or looked puzzled as I allowed him to lick tiny bits of ice cream from his fingers.

And no-one looked twice as I fed him milk through a tube.  And no-one appeared to notice that he still wasn’t walking at two and a half.  No-one frowned or looked puzzled.  And no-one looked at us with pity.  But I had to fight hard to swallow the lump in my throat.  And I had to work to resist the urge just to leave.

I rang to enquire about a place at the sensory play group when H was just 7 months old.  Investigations into his delays had just begun and up until that point I had been taking him, when I felt mentally strong enough, to local stay-and-play groups where parents of children of similar ages compared how much their child slept/ate/crawled.  It was isolating and upsetting and at times I felt almost apologetic when I had to explain that H was exactly the same age as their child.  Often I got away with it, as he slept through most of the session, though that was odd in itself, but when he was awake the difference was so stark that it was hard to avoid the questions.  Perhaps if I had cried they’d have stopped asking, but my blasé attitude only encouraged more questions, leaving me emotionally exhausted by the time I got home where I could have a good cry in peace.  It wasn’t all bad, one of the staff members in particular was amazingly supportive; her son was born the same week as H; she found a local sensory room for me to go to, lent me toys and sensory items to use at home with H and even to this day, still contacts me to find out how he is doing.  Anyway, I digress... when I rang them at 7 months old, I genuinely said “I’m not sure he’ll be ‘bad’ enough to go to your group” but they assured me that they took all types of special needs, from children that ‘just’ had a speech and language delay, to children with autism, Downs and other more complex needs.  I took him along and felt a bittersweet sense of relief that he did fit in there.  It was nice to belong, but I hadn’t really wanted to be part of the ‘disabled’ group.  It took the blinkers from my eyes a bit to see him fit in there.

The group was amazing but sickness and seizures meant he was off as often as he was there, until his seizures became so bad it was no longer safe to travel that far with him.  They kept a place open for him and when we finally managed to control his seizures through the ketogenic diet and had organised a carer from complex care to go with him, he returned in June of this year, almost a year after he had left. 

Most of the familiar faces were there, the children he had started with and there were a few new faces, but one thing was obvious, they had progressed in leaps and bounds (relatively speaking) and left H trailing in their wake.  When H started he wasn’t the only one who couldn’t sit; now all but one of them could walk.  Today at the party, I was confronted again with that harsh reality, that even in the world of special needs, H is pretty severe.  And by pretty severe, I mean profoundly disabled. Profoundly.

As the other children sat on their chairs at the table, H was in his pushchair being tube fed.  Even the other tube fed child sat at the table.  I couldn’t even get his pushchair into the side-room so he could ‘sit’ with the other children because there wasn’t the room.  He couldn’t climb in and out of the ball pool, crawl along the mats, roll the balls, hold the balls even.  The other children smiled at their parents, signed hello, interacted in various ways with each other and the people around them.  Many of them, recognising H, came and ‘spoke’ to him, whether that be through words, sounds, signs or even just smiles and gestures showing recognition.   H sat oblivious to his surroundings, to them, to me.  He was happy sure, but he is always happy really.  Which of course I am incredibly thankful for. 

But today, as a group of children with various syndromes and disorders and delays and additional needs sat around the party table clapping as they signed, or mouthed along to happy birthday, H sat in his pushchair on the other side of the partition, staring up at the lights on the ceiling, oblivious as I stroked his hand and bit back the tears.