I’m often asked what it feels like to have no diagnosis for Orange’s condition. How do you stay so positive? Aren’t you afraid? Doesn’t it completely mess with your head not knowing?
The truth is, that carrying around such big unanswered questions would be utterly paralysing if we let them take centre stage in our lives for too long. There are no answers and we have to carry on living our lives in acceptance of that, while still trying to do the very best we can for Orange.
It’s a fact that life does not stop to make way for finding answers, however much we might think we want or need them. So if we were to give in to fear, and let our heads run away with what being undiagnosed might mean, to stay in that dark place we dwelled in the early months of Orange’s life when we would have done anything to get a diagnosis, it would be all consuming.
Life would pass on by without us truly taking part.
When the months of waiting for a diagnosis give in to years, you have to find a way to compartmentalise the uncertainty and step back into the swing of life.
So we put our biggest fears to one side and get on with living the best life we can live. Enjoying the company of people we love, following our dreams and ambitions, and giving our children as many opportunities as we can for a happy life.
I am so grateful to have moved on from the days when all I could think about was finding a diagnosis. Most days, my head is full of pretty common-or-garden things. What to do at the weekend, wondering why am I vacuuming cat hair for the thousandth time this week, keeping up with work and the typical demands of family life.
But there are some weeks when the world forces me to fully square up to the very worst of those tucked-away fears. This last week was one of those.
It has always been a possibility that Orange’s difficulties are caused by a metabolic disorder of some kind. An ‘inborn error of metabolism’ that causes developmental delay and health difficulties. Many of these are regressive conditions, with short life expectancy. While his continued physical growth and capacity for learning would suggest such conditions are unlikely, none of them have yet been ruled out in the search for a diagnosis for Orange.
On Wednesday, we saw a metabolic consultant for the first time. Until now, I’ve been able to neatly parcel away my fears (and greatly detailed and probably unnecessary knowledge thanks to google) about metabolic disorders, but on Wednesday there they were, laid bare on the table before me.
The consultant was kind. Reassuring. Sweet with Orange as she examined every millimetre of his being. She took blood. A huge amount of blood from his (somewhat unwilling) little hand. Blood that was quickly and deftly portioned out into tens of little vials, to be whisked off to labs all over the UK and beyond. The consultant could not tell me the full list of conditions these tests will either rule out or identify because it is simply too long to digest. The tests will, over the next six months or so, look for small differences in Orange’s blood and amino acids make up, that might or might not lead us towards a diagnosis.
In that moment I was reminded, that while the boy sat before me is a big, healthy, happy, cheeky, growing young lad, we still have absolutely no idea what the future holds. Or how long that future might be.
And I had carried with me into that moment the desperate sadness of another family whose little boy’s future had been taken away. A letter home from school. Opened, hastily, in a snatched moment of downtime in the paediatric ward waiting room. One of Orange’s little school friends. A dear little boy, who has passed away. In that letter, the full weight of sadness in the school community was palpable.
Without doubt, the very hardest, most difficult thing about having a child with disabilities is that, in the wonderful connections you make with other families facing the same, some of those children will not make it. It is something that I don’t think any of us ever come to terms with. Every single time a child is lost, it is gut wrenching. We feel that family’s sadness in the loss of their child to the core of our souls. We are also cruelly reminded of the vulnerability of our own.
Knowing that outliving your own child is a very real possibility.
But what of the alternative?
Sometimes I joke that I need to live forever. But there was never a truer word said in jest. For who will look after Orange when I am gone?
In bleak terms, we do not have the money to provide the full time live in carers Orange will need as an adult, nor do we have a big family, and the chance of filling that gap by providing multiple siblings for Orange to help care for him when we are dead has been taken away from us by his lack of diagnosis. We simply have no way of knowing whether we are unlikely to have another affected child, or very likely indeed. It is too big a risk to take on.
But this week I also carry with me a stark reminder that I cannot live forever and that life is unpredictable. One of my closest friends, about to start treatment for cancer, which we have every reason to believe is fully treatable, but has taken us in our minds to some frightening places.
And Undiagnosed Children’s Day, as much as it is a positive celebration of our children and a hugely important awareness raiser, also brings with it the reminder that we are facing the unknown.
It has been one of Those Weeks. A week that once today is out I will put in a box in the back of my mind in search of calmer waters. The more ordinary the better.
For now, I am firmly ensconced on the sofa, playing spot the SWAN mum in the London Marathon (watching it always makes me feel ridiculously emotional, I have no idea why…), and feeling so, so thankful to have other SWAN families in our lives. For I know they all have weeks like this too. Without them, the darker times would be unfathomable, and the happy times distinctly less merry.
If you would like to sponsor Liz in her marathon madness, and help raise much needed funds to help keep SWAN UK going, you can do so here.
Thank you x