Wednesday, 14 April 2010

The Ghosts of Christmas Future

I've been remembering a visit we took back in 2007 to the spinal unit at Great Ormond Street.  L had been diagnosed with 18p- a few months earlier and we were there as part of the raft of tests to check out what was and wasn't looking problematic.
Having felt the little curve in his spine forever and asked for an appointment to check, we were told he had kyphosis, a c curve in his spine, and that he needed to be fitted for a spinal brace.  Besides the respiratory issues and slight delays that had brought us to our diagnosis in the first place, this was the first time we had it confirmed that things were different.  The word Deformity was used soon into our appointment and I had to stop the consultant immediately and remind him I was a mum, a human being, and he was telling me something I didn't already know, so please be gentle.  To his credit, he was.
So this day, we were back as a family to have L measured for his brace, a very upsetting thing for him and us.  In the waiting room D, J, L and I sat playing and thinking and trying to be brave, surrounded by children who all seemed so frightening to us and our apparently "typical" boy at that stage.
I started to talk to a friendly woman who had a boy, about 7 who was quite developmentally delayed and who had a brace on and was in a large buggy/wheelchair.  In the course of our chat I mentioned our still raw diagnosis and she said that her son too had a complication with Chromosome 18.  She then, with the best of intentions, proceeded to bombard me with information, help, advice, comparisons between our children and a barrage of words and thoughts and emotions that I didn't really know how to compute.  And as I talked to her and continued our conversation, trying to take it in, trying to have a small reaction because I knew she meant well, D built a silent brick wall around himself and zoned in on playing with the kids and making her, and himself, disappear.
We had our appointment, L screamed as we stretched him on a rack and kept him still to take the mould, D withdrew further into himself, still in the denial that shrouded him for so long back at the start of this, and I buried all the feelings.
A few days later I went to a weekend with my university girls, something we still do annually and will I hope continue to.  I was not myself, I was very stressed and quiet and my friends, bless them, really didn't know what to do as it was all so new.  Early on before everyone arrived I think I blurted out how screwed up my head had been from meeting this woman, on that day, with the appointment and everything around it.  How even though she'd be mortified to think she did this, she completely took me by surprise and made things a lot worse in my head.  And I really didn't think it COULD get worse at that point, lonely as I was, my darling sis having just emigrated to NZ, my local family all hurt, frozen by their denial, my having not worked for so long, the pressure piling up and it all feeling so very very hard.
A few months later I found the Chromosome 18 Registry ( and a whole world of people who lived a life similar to me and who immediately took me to their hearts.  I started to post emails, treasure the replies and begin to make the friends and get the advice that has become so important to me. 
I used to describe the C18 lot, as I did this woman in the waiting room, as the Ghosts of Christmas Future, who in talking about their lives were showing me things that may be part of mine as L grows and unfurls himself.
But these parents, these wonderful few, enrich my life and make me look at everything I need to see, and it comes forward to the front of my mind when I need to see it.
They are my lifeline and although sometimes overwhelming with the detail of all they go through, something I really couldn't do without.
I've only today told them about this blog, gently emerging as I am into the public with it.
so for any of you who stumble here out of loyalty and/or curiosity, thank you for all you cope with and all you are and for making our journey sweeter and more informed.

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