You see, SWAN UK have been shortlisted for a National Lottery Award in the health category. Winning means exposure to a wider audience, it means the publicity that a small organisation simply can’t pay for. But in order to win, they need votes. Lots of them. Now if I already have you on board, feel free to just skip to the end and click through to vote. If not, have a read and see how you feel. Though you should know that I just bought a bumper pack of mini Cadburys bars and I’m in a sharing mood. I’m just saying...
I have often heard of people use the phrase ‘having the rug pulled out from under them’ – usually in response to a medical diagnosis, a family loss or a shocking unexpected social circumstance. When Little J became undiagnosed, that was a pretty accurate description. Only when it is happening to you, it feels more than that. When it happens so unbelievably quickly. When, within 24 hours, your seven month old has gone from ‘thought to be mostly healthy’ to ‘has a life long rare genetic condition, oh and it might be progressive’. When that happens, the metaphorical rug feels pretty damn big. In fact, it was more like the entire floor gave way.
And without that central support in place, the whole structure of our lives followed suit and began to crash down, wall by wall. Suddenly I couldn’t go back to work. In fact I feared my career may be completely over. Our income dropped by 40%. We had to move. Plans for a long awaited holiday were cancelled. We suddenly needed so much. We needed therapies for Little J. We needed equipment for Little J. Only we were stuck on waiting lists. We needed to learn the system. We needed to learn to fight for our son.
Then there was the echoing crash of the ceiling coming down, bit by bit. That was the unrelenting emotional impact. It didn’t fall down at once. No, little things chipped away at it, piece by piece. Looking up the genes he was being tested for and reading what they meant. Screaming at Little J to breath when we found him, chest motionless, movement monitor alarming due to central sleep apnoea - something we didn’t even know he had. The Registrar at the hospital furrowing her brow and opening her mouth to say something upon hearing he no longer babbled; then looking at the Consultant and deciding it wasn’t her place. The Neurologist placing her hand on my arm as we got up to leave an appointment – the gesture of one mother to another.
Then there was his pain. My god the pain. I can’t begin to describe what it is like to see your child in agony. There are no words. For eight long months Little J suffered intermittent bouts of full body generalised dystonia. Every muscle in his tiny body would stiffen, his arms would twist back, his feet would claw. Imagine a cramp, times it by a hundred and you are getting close. It was enough to make an experienced nurse on the children’s ward step back with dampening eyes and comment on how hard it was to watch. It happened twenty times a day, for around two minutes per time, for eight long months. There was a time last year when I would struggle to walk down the street without having to stop and pull him out of his buggy as he shook in pain, mouth open, unable to get the scream past the contracted muscles. Oh, and there was no guarantee that we would ever find any medication that could help. Especially as no one had the faintest idea why it was happening.
When I have days of fear thinking about development or disability, I remember that time. Because right then, I really didn’t care about anything else. I didn’t care how disabled he would be. I didn’t care if the rest of my life would be spent caring for him. The only thing that mattered was getting him out of pain.
Amazingly, that is exactly what happened. I can’t say that he never experiences muscle pain, but we are 90% of the way there. Our neurologist found the right medication and even she is surprised at how effective it has been. I have read a lot of stories about movement disorders and I know how lucky we are, particularly without a guiding diagnosis. We won the trial and error medication lottery – although we had a fantastic doctor picking the numbers for us. As a result, Little J’s development is progressing ever so slightly. In fact, I feel a whole new wave of positivity about his development. Whilst not all of our test results are in, I see this is a good sign and I now feel it unlikely that his condition is progressive (yes, that may be folly and I am far from medically qualified – but just go with me on this one.) He is social, happy and suddenly much more interactive. The world is looking brighter. We are so much stronger. We are able to accept that our lives will always be 'different'. Thanks to my hugely supportive employers I am even able to think about returning to work. And what’s more I feel excited rather than worried.
But there was a big journey to get here. A major rebuild had to take place and SWAN UK played no small part in it.
When you have an undiagnosed child, there is nowhere to ‘fit’, no one to ask questions to. When we came home from hospital, floor well and truly removed, I spent a lot of time scouring the internet. I flirted with joining some groups. I stood on the sidelines of Special Needs forums and read what was being said. But I couldn’t fully interact. I couldn’t engage. I couldn’t comment on a specific condition that Little J was being tested for, as I didn’t know if he had it or not. It seemed rude, insensitive to those families who were living with that diagnosis. With nowhere to belong, raising a disabled and medically unpredictable child can be a lonely road. Not in terms of friends or family, who do all they can, but just in terms of having people who understand the ins and outs. People who can signpost you to the right place, people who can answer obscure questions about which posturally supportive pushchair is best and who don’t mind a lengthy chat about the implications of low muscle tone and the lower digestive system (work it out.) People who, despite their own structural collapses, take time to bring the ladders, bring the cement and tell you how to put your house back together again.
It took me a long time to engage with SWAN. I first heard about them during my frantic Googling in hospital. That was in April last year. But it took me until December to actually get involved. Yeah, I know, I don’t really know what’s up with that either. The membership form sat on the table, slightly wrinkled, with an increasing number of coffee stains. Perhaps it was because I felt that by declaring Little J ‘undiagnosed’ I was giving up. Perhaps I was still in denial. I don’t really know. I should know better. Working in the voluntary sector, I know how amazing charities can be. Whenever I meet someone affected by a condition or cause, my instant response is to urge them to engage. Well it turns out I am a massive hypocrite.
What actually got me there was finding one of the SWAN blogs. I started to follow it. I recognised so much of what was being said. It resonated with me in a way that no amount of charity marketing materials or website content could. I never expected to end up blogging myself, but remembering this spurs me on when I get a bout of nervousness about putting our lives ‘out there’ so much. I can’t think of many charities that have so many dedicated bloggers. As I have read more and more, they have helped me to know that we are not alone. That there are others experiencing the same things. The SWAN online community has also been invaluable in this respect and we even had the opportunity to meet other families at one of their meet ups. As time has moved on, we have become less and less isolated in our position. Most of all we finally see something. We see that it’s not just us. Because when the doctors are totally unable to tell you what is wrong with your child, it just all seems so surreal. So statistically unlikely. You start to think that you must be the only ones. But you aren’t.
And so as time has gone on, things have stabilised. We are more ready to face what’s ahead. The fabric of our lives has changed forever, but we are moving forward. The raw materials have changed, but more walls are being rebuilt, getting higher each day. Other charities have played a huge part in this, offering advice, funding sensory toys and even lending us a pushchair. We are eternally grateful for this and when I think about how we found these organisations, it is almost always thanks to SWAN. These organisations have contributed massive supporting beams to our rebuild, but it is SWAN who put up the scaffolding.
So, here we are now, increasingly positive, increasing accepting of our circumstances. Things will change; some walls will fall down again and need repairs. That is simply the reality of life with an undiagnosed child. But the inevitability of this feels a lot less ominous now. Now that we know there are people with the knowledge and sheer good will to help. Our structure may be a little wobbly, at the mercy of unpredictable and ever changing winds. But when it really comes down to it, the foundations are pretty damn strong.
Interested? Want to hear more from other SWAN families, why not click on one of the links below.