‘And do you have any worries about your other child?’ A question I am asked a lot, by every professional we meet, in fact. A question that is always followed by a poignant pause, and a silence from me as I wonder what on earth to say, then mutter, ‘no, no, she’s fine’ and gaze at the floor, or twiddle with my earring, awkwardly, waiting for the next question. ‘Does she look like Orange?’ ‘Is she developmentally normal?’ (A phrase I have grown to dislike intensely, hence it is in italics as a way of demarking it physically from my own chosen words).
It is hard for me to sit down and write this, to dig around in the corners of my brain where uncertainty lies, since life has been so colourful and happy since we moved to our beautiful little coastal village, but in truth, yes, I do worry about Beep. I worry in all the ways a mother of any child does, of course, but there are some larger, looming spectres that trouble my mind now when I think about Beep, and her future.
You will have to forgive my pseudo attempt at explaining the science behind all this, but it is relevant, so stay with me… In simple terms, we don’t know the cause of Orange’s difficulties, but we have been told it is likely what they call a ‘single gene disorder’. In other words, one of Orange’s genes is somehow faulty. We have no idea which one, and trying to find out which one it is could take years and years of testing, with no guarantee of an answer at the end of it. For him, now, it doesn’t really matter. Whatever it is, we are told it is now in the realms of being so rare that even if we find out which gene it is, and we are given a diagnosis, or a name for his syndrome, there will be so few known cases worldwide that his prognosis will remain unknown. There are no comparables. He is just Orange.
It is possible that this troublesome little gene is a fluke of nature and that, in the moments when Orange was but a little speck of cells, something random occurred that left this one gene slightly out of shape. Or, it is also possible that this faulty gene is the result of something more calculated. Something more predictable, and measurable, in Mr Mavis and I, that means any and all of our offspring have a 50% chance of being affected, or perhaps carriers. And this is where Beep comes in. We have no idea if she is affected (seems not, but who knows what’s in her future given we have absolutely no idea what we’re dealing with), and equally we have no idea if she is a carrier. Her own childbearing right of passage, should she choose it, could turn out to be rather complex.
I also worry for her in school, growing up, being the sister of a child with disabilities, particularly learning disabilities. I have written about this before and I still don’t know quite how to help her, or protect her, from the hurt this might bring. For now, I am hanging on to the hope that this might be a little easier for Beep here in Cornwall than it would have been in Surrey, where we all too frequently found that disability is just not talked about in many circles, where a significant but often silent majority find it shocking, disgusting, funny, or at least something they don’t want to hear or see. Unkind, thoughtless comments, jeering, averted gazes, pretending that disability doesn’t exist. These are the things that cause hurt and harm. I have developed a thick enough skin to brush off a fair amount of that nonsense, or to challenge it when necessary, but a young girl shouldn’t have to do that.
There are some things more immediate, more pressing, that I so desperately want to fix for Beep. She coped so wonderfully, so bravely, when Orange had his first seizures, but has taken to playing a game, all by herself, that makes me want to scoop her up and erase from her sweet little mind that terrifying morning when Orange stopped breathing. ‘My baby’s got a blue face’, she says, carrying a doll under one arm. ‘He died, but he’s ok now’, she says, gently stroking her doll’s head and pretending to phone for an ambulance.
At times, her anxiety is palpable. Nothing but mummy cuddles will do. She is alternately quiet and manic, her young heart and mind working overtime to process what’s happening in her world. A whirlwind of hospitals, machines, worried faces, whispered words and exhausted parents and then without so much as five minutes to catch a breath, her home was packed up for the third time in a year, she waved goodbye to another nursery and was whisked away to start a new life, here in Cornwall.
I know there is no way of taking away the fear that she must have felt, the anxiety she will have absorbed, the sadness and confusion there has been at times, and the frustration and boredom she has endured while working around Orange’s appointment schedule. What we can offer her here though is something she won’t have felt for a long time, certainly not since Orange arrived, and that is security. A sense of place, a sense of self, a sense of belonging. Slowly, piece by piece, we are building a life here. And the healing, soothing power of being by the sea is even greater than I had hoped. Even though she is only three, I can see her responding to her new environment in a way that gives me such hope and joy. Just this weekend, I took this picture of Beep hitching a ride on daddy’s shoulders as we strolled down the beach enjoying the morning sunshine. Quietly contemplative, the sound of the waves in her ears and the salty air filling her lungs, she sang and chatted sweetly as we walked along. I just know this place is good for her.