And sometimes prescribed drugs. And a tracheostomy. And a feeding tube in to your tummy.
And a consultant and physio that you completely trust. But love is still pretty high up on the what’s needed list!
With Valentine’s Day on the horizon, and an episode of The Undateables on the TV, my thoughts have been wandering to love and relationships.
Our little girl, Heidi, will be two in March, and, to give a very brief history, suffered a HIE (hypoxic ischaemic encephalopathy) event shortly after birth (basically her brain was starved of oxygen).
She has Cerebral Palsy, and lots of the extras that go with it; epilepsy, dystonia, hearing and visual impairments, tube fed, trachi, developmental delays, you get my drift. Non-mobile, non-verbal, but pretty ace!
Now I know that generally, two year olds aren’t really worrying about whether they will find a partner, get married and have children. Episodes of Peppa Pig and the Twirlywoos possibly take a much higher priority.
As much as I try not to, sometimes I can’t help thinking about the future – both the actual future that we might have, and the “could have been” future that we had dreamed of before we started on this rollercoaster journey.
As my bump grew through the pregnancy, so did the images in my head of how our baby would grow up to be a toddler, a teenager, an adult, and what kind of person they would be. At no time did it cross my mind that they may be described as “complex” or “severe”, but that’s where we are, and the images have had to change.
I know that there is hope, and nothing is for certain, but I accept that it’s probably unlikely Heidi will develop to the stage where she could have a meaningful relationship, you know, like a boyfriend.
At first I felt a bit sad, but then I realised that she won’t have to worry about horrendous first date nerves, or about the number of Valentine’s cards she gets compared to her friends, or about if she will ever meet “the one”, or about all the other things that teenage girls and women (and of course boys and men) have to ponder.
Watching The Undateables (if you haven’t seen it, it’s a TV show that follows people with different conditions and challenges, as they search for love) brought out mixed emotions in our household. My partner was concerned that it could be seen as mocking people, whereas I felt it was a really positive message (apart from the title, not liking that too much, it makes it sound like these people won’t be able to date, or that there is something “wrong” with them).
It opened my eyes to how amazingly different we all are. I think I have been so absorbed in our little bubble, that I had forgotten to look out to the big wide world and see what was going on; the struggles that other people face; the battles that people go through on a daily basis; the loss and despair; the miracle stories; the celebrations; the laughter; the love.
So yes, being in the world of special needs may mean that we need extras to help us on our way, but we all need love, and I hope you have oodles of it.
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