I have been emailing Ruth from DragonMobility about her work on Early Mobility as, of course, with my scientific brain, medical training and interest in evidence based medicine, I'm interested to learn more.
Today Ruth got back to me and added this:
"On a personal note, I have been following your blog and I just wanted to say that the shock you feel now about Eilidh's diagnosis will ease. The grief you feel is totally understandable and reasonable (right?), but you will get though it. Eilidh, having never planned any trips up Ben Nevis which she must now forfeit or set her heart on being a deep-sea diver, will know inherently that this is ok and she will help you to realise that too. (My mum had hoped I would win Wimbledon, but as I don't much like anything you have to practice eight hours a day, it was never going to happen anyway. My sister, also, has nothing to do with the Lawn Tennis Association although she does much better than me with a racket.)
I can't speak for Eilidh aged 30, because she will become a different woman than I am, but from this 30-year-old with SMA I can tell you that (even though we would all much rather have no difficulties in life at all, but who gets that?!) I am grateful to have been dealt this one. SMA is quite simple really - walking and breathing, while fundamental, can be augmented. Loving and thinking, causing trouble and generally living - they all work fine :) It is the human condition to hit barriers, but this one presents definable, soluble ones that are not too devastating to the other aspects of life. There will always be times when you (and Eilidh) feel sad about what she cannot do but overall you are likely to mostly feel proud and lucky. Hang on in there."
So eloquently put, it reminds me that my perceived future for Eilidh, for my family, doesn't exist: it never did. We have a new and different future which is real and full of possibilities. It is yet to be lived and we can start each day a new. Eilidh will grow up with SMA - as will Niamh - and D and I will adapt... with Eilidh at the helm, reminding us how blessed and grateful we are. Thanks, Ruth for letting me share your email.