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Life in our Bubble: Feelings

12.02.19

Recently a friend broached the subject of our daughter’s life expectancy. I knew where the conversation was heading long before she asked the question. She just came out with it in the end. I gave a brief answer but didn’t dwell on it. It’s upsetting to talk about and I rarely engage with the subject in any depth with anyone except my partner.

My friend and I had been chatting about our futures, how we longed to slow down a little, relax more and take time for ourselves. She runs a small business and has a teenage son. She’s always busy. My partner and I both work. And are carers. We’re always busy.

She was full of stories of her son’s adventures, his angst and apprehension at becoming a young adult and the independence from her that this was bringing him. She wondered what it was like for us, with our daughter who will never have that kind of independence. 

For the most part my partner and I share our complicated feelings about our daughter and the life we’ve led together as a family for the last twenty plus years. We’ve asked ourselves plenty of questions, and from the hundreds of professionals and others who’ve been involved in our daughter’s care and development from infancy to adulthood we’ve sought input and understanding.

We’ve tried to keep positive and focused on having fulfilling and well balanced lives. It’s not always an easy or achievable thing but there’s no room for regret or “if only”. Unwanted thoughts can creep in at any time and often when least expected. We try to push them aside and ask instead: What could we do better? What else could we do to enhance her quality of life (and ours)? We can only hope we are making a difference.

The other day I attended a training course with one of our daughter’s PAs. Augmented and alternative communication. AAC. A day with other parents, carers and professionals to look at ways of supporting our children and adults in the expectation that they know so much more than we give them credit for and that we can provide them with the tools with which they can speak to us and us them.

Thinking on the matter of language and communication for non verbal people has changed so much since our daughter was at school. Speech and language therapy seemed then to consist of offering choice cards of apple and orange and very little else. Our girl was judged on not choosing either and deemed therefore not to understand. In fact she simply wasn’t interested in the options she was presented with and there was no “something else” to pick as there is now.

I remarked to the PA that I felt sad that we had almost missed the boat with AAC and had a lot of catching up to do. We’ve tried other ways of enhancing our daughter’s communication over the years but never really felt we were progressing much or being properly supported. But I was glad we had this chance and possibility and we would do our best to make it happen. She replied that she had heard someone on the radio say that guilt is a wasted emotion and has no positive value. I wasn’t talking of guilt though, was I? Perhaps I was. When I got home I looked over the feelings section in our daughter’s symbols book. Guilt wasn’t there, but being sad was.

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