Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

An Unwelcome Return to the Past

I thought we had got away with it. Diced with death and won, I suppose. I was feeling almost a little smug; almost a little complacent. Some days I left the oxygen in the car. Some days I didn't know where the nearest bottle of Midazolam was.

I remember the days when there was a bottle of Midazolam on the mantelpiece, one at the end of the cot in our bedroom and one in the oxygen bag we carried everywhere with us when we left the house.
I remember the days I slept holding H's hand to be sure I'd hear if he stopped breathing in his sleep.
I remember the days we didn't leave the house in the fear that I'd have to resuscitate him at the side of the road.
I remember the days friends and neighbours would take Cheeky to and from nursery because H wasn't well enough to leave the house.
I remember the days I couldn't leave H in a room alone in case he would have stopped breathing on my return.


I remember the days I would pray he would still be alive in the morning when I awoke.


I remember them as if they were yesterday and yet I remember them as if they were someone else. I am not sure how that person coped. I am not sure I could cope again.

It had been 10 months since H had a seizure that required resuscitation. 10 wonderful, amazing months. We went on holiday. We went out with friends. We made plans. We looked to the future.

I recently discussed H's improving health with his paediatrician. She confirmed my hopes that the absence of this type of seizure dramatically improved his life expectancy. Yes, he was still classed as 'life limited' but the life threatening element wasn't such a threat any more. Instead of hoping H would reach his 5th birthday, there was every possibility he'd reach his teenage years. I jumped for joy.

I started to feel guilty that H had 1:1 care for 8 hours a week. He didn't need it any more. I started to wonder whether we should even be using the local children's hospice, surely there were other, more deserving children that should be accessing their support. How silly and naive I was.

The first punch to the stomach came when I had a phone call from the hospice to tell me that one of the children had died. I have had lunch with her mother a few times though I had never met her daughter. She was 10 years old.

The second blow came when H had his first overnight stay at the hospice. We all stayed in the flat upstairs while he was cared for downstairs by the nurses. He was good, as I knew he would be, and each time I went to check on him in the middle if the night, he was fast asleep. A few doors down the corridor was a boy whose story I have followed on the Internet for some time. He died in the early hours of the morning. A beautiful little boy, not much younger than H; his big sister a little older than Cheeky.

The final knock, taking my feet from beneath me, was on Saturday morning when H stopped breathing again.

10 months without a seizure needing resuscitation and then ten in a day.

The Midazolam is back on the mantelpiece, the bag and mask by his chair, the sats monitor plugged in charging for use overnight.

10 months is a long time, but it doesn't mean he'll never have them again. H is still as at risk as he ever was and I was foolish to think otherwise. I am taking this as a warning, a wake up call and I am praying it's a one off, a minor blip due to illness and not a return to the 30 a month he used to have. I can't go back to living in fear, never turning my back on him. I can't. And I won't.


Comments

  1. my thoughts are with you hun. stay strong. You CAN do it but I hope you don't have to

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  2. I'm sorry you have all this stress and heartache watching your little boy suffer.

    I do hope the cluster of fits was a blip - due to illness, and that they've disappeared as quickly as they surfaced.

    I'm sending you a big hug, not that it's much help, but still, it's my way of saying you're a brilliant mum and how much I admire your strength. xx

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