You might remember last week that I posted about my little girl going for her first overnight respite and that I was a bag of nerves over it, well you’ll be pleased I hope to hear that it all went just fine, although I will admit I had zero concentration that evening for anything very much!
I wasn’t surprised to hear that she had good fun in the respite home and went off to bed just fine and slept well, I know her well enough by now to know that she is generally a happy, easygoing little person who takes change in her stride. I will admit to a little pang when I got the text to say she was fast asleep – not that I wasn’t delighted and relieved – I was – but there was an element of ‘did she not even miss me??’
So that’s another hurdle crossed, Fionnuala flew over it and Mum struggled and stumbled but got there in the end. Phew!!!
One of the hardest things about parenting a child with special needs – in my opinion anyway – is the never-ending nature of it. Everyone has stresses and strains in our lives and at times those are such that people need anti-depressants or counselling or both. I have had both at various times in my life, most recently after we decided not to have another baby, because the risk of our daughter’s condition reoccurring in another child was so high. I know myself well enough to know that I would need help to get through the initial phase of trying to cope with this decision, so I visited my GP and talked it over with her. She recommended a low dose of anti-d’s and arranged some counselling for me.
I don’t know how well I would have managed without these but in the end it was me who made the decision to stop both. Not that they weren’t helping, I think they were – but only to a certain extent. And after some thought I realised what that was. The issues in my life that cause me the greatest stress, worry and distress are the fact that my child has physical and intellectual disabilities and the related fact that I will never have any more children. No amount of tablets and no amount of talking talking talking is going to change either of those facts. So how to move on? Hmmm. Now that one I dearly wish I had the answer to. Most of the time I’m fine. But sometimes I’m reminded of Sally Field in Steel Magnolias when Olympia Dukakis asks her “Are you ok honey?” when they are walking away from her daughter’s graveside. “I’m fine”, she replies, “I’m fine”, and it becomes a visceral scream “I’m fine!!” I can relate so strongly to that. We keep saying we are fine, we are coping, we are ok, we are strong. And yes we are strong and we are coping and generally we are ok. But not always. And – as yet – I have not found the magic way to make it all fine. Its hard. Its bloody hard.
But we put the good face out and we battle on. I read a great line by Frieda Finlay once which for me sums it up: “Don’t ever think that parents get used to having a child with a disability. We don’t. We develop enough scar tissue to stop us bleeding in public, and to carry on some kind of a normal life.”
There is no logical end to this piece –in some of my other blog posts I’ve had a nice, logical conclusion, argument made, point pressed home, all neatly tied up, just like the academic I trained to be. But life isn’t all neatly tied up. There won’t always be a logical conclusion. Sometimes all there will be is carrying on, day in day out, same old same old. Its like I’m fighting against the serenity prayer. I hope I have some courage. I think I have some wisdom. But the serenity – at times that eludes me. I know I am not alone in feeling this way and I hope that knowledge helps other parents too. Scar tissue has become one of my strengths.