Sunday, 22 January 2012

Special Saturday - Dealing With Setbacks

This week for Special Saturday we are talking about Setbacks and how we deal with them. I've been reading all the posts and every one's setbacks are very different. Some people cry and others just get on with it but the over riding theme is - everyone copes because they have to.

We are no different.

Cameron's life has been filled with setbacks, even before he was conceived. We tried for five years to have Cameron and to be honest - we almost gave up. We had set back after set back and we really thought parenthood wasn't going to happen for us - which was a thought almost too much to bear.

But like everything else that has set us back we just didn't give up. Some times we take a break, sometimes we find another way and sometimes we just get really pig headed and just keep trying.

I could probably bore you to death with all of Cameron's setbacks but I think the one setback that springs to mind the most is what happens after he has a seizure. Cameron's seizures aren't short, they aren't seconds long or minutes long, they aren't even an hour long - they are hours long.

Every time Cameron has a seizure we sit in emergency and wait for him to come back to us. We have waited for up to eight hours and then he isn't with us but he is alive and breathing calmly and ready to move to a ward. I then sit beside him and wait for him to wake up, thankful that he has survived again.

It's during those twelve to twenty four hours that I start to imagine all kinds of things based on past experience. The anxiety builds and builds and the tiredness grows and grows. I search his face for any sign of normality and eventually his eyes flutter open and if we are lucky his smile returns.

Then reality sets in and we find out what skills Cameron has retained and what he has lost. Some times he is drooling and can not drink. Some times his fine motor abilities have diminished. At times he's lost the ability to eat and he's lost the ability to stand on his own two feet. We've lost words and signs, confidence and knowledge. The ability to blow his nose and blow out candles has been achieved and lost.

I think the worst recovery was the time we realized that after all the huge achievements we had made in almost toilet training Cameron - it was all gone. And even today four years later, despite all the incredible gains he has made in the last two months we are still not back to where we were with his toileting. I will never forget the look of horror on his face when I took him into the bathroom to go to the toilet and he saw the toilet. It was as if I had shown him the most terrifying thing in the world, my heart sank.

It's been incredibly sad and frustrating to watch Cameron achieve new skills which were so much hard work to achieve in the first place and gave him independence and then to lose them in the blink of an eye. It has frustrated his teachers and assistants and I'm sure it has frustrated Cameron.

But we have a motto in our family - Always Look on the Bright Side of Life - and never is this more poignant than after a seizure. Sometimes there are tears - there certainly were when we lost the toileting abilities - you have to grieve. Then there is acceptance and then you move on to moving on. There is no option to give up or give in. You just keep trying, I believe if Cameron has done something once he can do it again, we just have to convince his brain to make that connection again.

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

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8 comments:

  1. The challenges you are experiencing are many and pull at my heart as my eyes fill with tears. You are a strong woman.

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  2. Thanks - I don't feel so strong some times but we get there. We are so lucky to have Cameron and he loves us so much, it makes everything worth it.

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  3. It is unfortunate that there is regression but what can you do to prevent it... nothing, except put one foot in front of the other and just keep moving.
    We all have to look on the bright side because the alternative does not bear thinking about.... Anyway, life is short, we must live for the moment. Carpe deim!

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  4. Exactly right Di - Life is not a dress rehearsal.

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  5. Jane, the regression & agonising wait for Cameron to come out of a long seizures must be unbearable for you. Chrissy had one status epilepticus while I was pregnant & I was terrified. Thankfully, she's never had one since. Puts our problems into perspective when I read posts like yours. You're an inspiration for staying so positive too!

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  6. Thanks Jane. It's hard but we still have him so that makes it all worthwhile.

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  7. How terrifying! Hugh's seizures, as you know, are very different - and those minutes are terrifying and stretch on for an eternity. I can not imagine the fear and sheer terror of waiting for such a long length of time for them to end. To lose so many skills too is heartbreaking. Such terrible setback's Jane! It is inspiring that in the face of it all, you remain so positive and determined and keep working to re-teach him the skills he has lost.

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  8. We're a funny pair Little Mamma - I think Hugh's seizures sound terrifying and heart stoppingly scary. At least I get a bit more time.

    It is so frustrating to lose skills but there is no option but to keep going - you have to.

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