UCD2021: Katherine’s story

If you’re a parent, or even if you’re not, I’d like to take you on a little imaginary journey.

Imagine, for a second, that you are standing in the foothills of a mountain. When you reach the top, you will know that you have fulfilled one of the most basic hopes and desires of our human selves; to bring another human into the world and raise them to adulthood.

Some of us spend a long time in the foothills, watching others scaling the mountainside at pace, while we wait for our turn.

Some of us end up here by accident, this wasn’t a planned part of our trip, but here we are doing it anyway.

Many of us assume we will climb this mountain at some point, and that our friends will too, and given any luck we’ll set off on this trek at approximately the same time.

Some of us sign up to climb this mountain again and again and again, while some of us will only do it once.

Some of us climb the mountain on behalf of other people, who maybe couldn’t do it themselves.

Typically, we assume we will eventually reach the top.

When you arrive at the foothills, nobody tells you how to get to reach the summit. You must find your own path. Most people group together, following well-trodden paths in front of them, while a few set out to scale new slopes and surfaces, cutting new paths for others to follow behind them.

You stand and watch, and you notice that one particular path seems to be the most heavily trodden. Ah, this must be the easiest way up, you think. Most other people seem to be heading in this direction so this must be the best way to the top …

You join the queue of people waiting to join this path. And you notice that at the head of the queue, people are being given a pair of hiking boots, a compass, and a pack of basic survival supplies. They are placed into small groups with people who they seem to hit it off with, laughing and joking about the challenges ahead and setting off hesitant but, for the most part, confident.

Your heart is lifted and you feel hopeful about your own expedition.

And yet when you get to the front of the queue, the guide searches and searches but cannot find a pair of hiking boots or a survival pack with your name on it.

No compass either.

He’s very apologetic but now you are holding up the queue and so he waves you on with the rest of your group who all appear to have their allocation of boots and packs and compasses and nobody else has noticed that you don’t.

Up the mountain you must go, in just your sneakers.

You try to keep up with your group, but after not very long at all you are thirsty, tired, and blisters are forming around your heels. The group powers ahead and despite your calls for them to slow down, or give you a hand, your voice is lost among the chatter and they don’t notice you have fallen behind.

A gentle mist starts to blow in across the mountainside. Rather than navigate your way alone without a compass, you find shelter behind a rock and sit down, waiting for the fog to pass, trying to plan a path ahead. There is no way down, only up. You have to find a way to keep going.

Looking around, you see nothing but mist, and mountainside. Rocky terrain and clouds of grey that mask your view of the sun, the ground, and the people who you know must be around you, somewhere. You shout out a nervous ‘hello?’, but hear nothing except your own voice reverberating around the landscape.

After a while, you think you hear a shout coming from above. At first, it doesn’t seem real, and then maybe you think it does but you assume this voice is not shouting for you. It must be for someone else, you think.

With everything to lose if you stay silent, you call out in return, hoping to attract their attention. And as you do, you see a waving figure through the mist, gesturing towards you to come up, follow this path, join them … for they have guides and refreshments and can get you back on your feet to keep going and, maybe, to catch up with your group.

Soon, you are back on track, but your expedition up the mountain follows this pattern on repeat. Eventually, you find peace with that, knowing that these waving figures, these allies in the mist, will be there to pick you up and dust you off and help you find a path up the next ascent.

10 years ago, when my youngest child was born, it wasn’t long before I found myself, as so many parents whose children have disabilities do, metaphorically attempting to climb the mountain without a survival pack. There really was no pre-trodden path, no matter how lightly, because my son had (and still has) no overall diagnosis to explain his disabilities. And when I searched around me for allies, at first, I could see none. I felt totally alone. What I didn’t know, until a year later, was that at almost the exact same time as my son arrived in the world, SWAN UK was born, where I would find my very own allies in the mist.

Serendipity, perhaps.

SWAN UK (which stands for syndrome without a name’) is a charity that connects families whose children have disabilities or health conditions that have no overall diagnosis, but that are generally understood to be caused by what doctors would call a syndrome, a constellation of differences or difficulties that have a unifying, underlying cause, but that science hasn’t yet been able to put a name to.

I found SWAN UK online, while doing that thing that some doctors disapprove of highly – searching on the internet to try and find out what was going on for my son. All of a sudden there they were, these wonderful people (mostly women), waving across the mountainside. And together we have walked, since then.

Often it’s said to mothers whose children have disabilities that the best thing they can do is to find friends going through the same thing. But actually, I’d say something a little different.

I’d say find yourself allies. And some of those allies might well become friends too, I know some of mine most definitely have.

Lifelong ones, I expect.

Because while most of our friends will reach the top of this mountain and be able to wave their flag from the summit with joy, exhaustion and relief, before taking a gentle stroll down the other side, many of us who have disabled children are setting ourselves up for a lifetime on the rocky side of the mountain. Mostly because many of our children will need our care throughout their adulthood too. And, sadly, because a few of our children do not make it to adulthood at all.

Luckily, it’s beautiful here, and the views are pretty damned fantastic, but there certainly are times when we need a guide, a helping hand, refreshment, and sometimes even mountain rescue.

My SWAN UK family have certainly been all of these things for me over the last decade. I hope I too have been that for others, and that I can continue to be able to pay it forward for many, many years to come. So hey, if you landed here because you’re at the foothill of the mountain and wondering where the hell your survival pack is, here we are, your allies in the mist. You can come and find us at SWAN UK.

SWAN UK’s awareness day, Undiagnosed Children’s Day, is on Friday 30 April and it is an extra special one because we are also celebrating SWAN UK’s 10th birthday on 9 May. While disability without a diagnosis is surprisingly common, many people still don’t know that this real life situation happens all the time, and as a result, they can feel very alone. You can help by sharing this post, donating to SWAN UK, and reading and sharing information and family stories about life without a diagnosis. Thank you.

As posted on: passthesaltwater.com.

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