It takes (more than) a village to raise a child (with an undiagnosed genetic syndrome) #thankyouteamorange

When Orange was not quite two, I remember counting in my head the number of doctors, nurses, specialist consultants, therapists and support workers that had been involved in our lives as a result of his difficulties since he was born. I was astounded when I got to 46 and was sure that I wasn’t done counting.

Since then, Team Orange has grown considerably. I stopped counting some years ago but in his five years I can be sure that well over 100 and probably over 200 health and social care professionals have been involved in Orange’s care to date. And that doesn’t include the hundreds of administrators and officials who we speak to day in day out to coordinate appointments, medication reviews and prescriptions, equipment deliveries and repairs, blue badges, disability benefits and education, health and care plans.

That’s an awful lot of people to welcome into your lives. An awful lot of people to open up to, to place your trust in and to rely on to do what’s needed for your child. An awful lot of people who need to work together, in a coordinated fashion, to deliver the right support and care for your child and for you, when you have no idea what you are doing and are learning as you go.

If I have learnt anything in raising a child who has severe disabilities and complex medical issues but with no diagnosis for his condition, it is that I cannot do this alone. It is too big a job.

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While I know that I am the world expert on my boy, I am not the world expert on epilepsy, hypotonia, dysphagia, arachnoid cysts or scoliosis. I also need to sleep, work, take care of Orange’s sister, be a wife, sister, daughter and all the other ‘normal life things’ that can get swept aside when you are a parent carer. I can only do ‘normal life things’ if we have help.

As much as there are (many) times when I just want to snuggle down with Orange and hide away from the perpetual merry-go-round of appointments, medical examinations, reports, meetings, phone calls, letters and assessments, I know that I would be doing Orange and all of us a dis-service if I didn’t build a solid team around us of people and professionals who can help. And lead this team to deliver what Orange needs to be safe, happy, well and fulfilled in his life.

When you have a child who has complex needs but no diagnosis there is no well-trodden pathway, no yellow brick road to follow.

No-one will show you the way.

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Here are some things I wish I had known, that would have given me confidence, in the early days of us discovering Orange had a syndrome without a name.

You will have to cut your own path, often in a forthright and determined fashion, even when you are at your most worn out and frightened. You will have to do this to access simple things like the right schooling, essential medical support, suitable childcare so you can work, or fit-for-purpose home adaptations for basic daily care like having a bath, or essential tasks like leaving the house. You will do it, because you are strong and because no-one else will.

Lots of people will enter your lives that you didn’t expect. Some invited and some uninvited. Sometimes this is exactly what you need. Sometimes it will drive you nuts. Often at the same time. Roll with it but know that you can press pause if you need to. You are in control.

You will learn to trust people. You will also learn when not to. Your gut instinct is always right. Use it. Lean on the people who you trust and ask for a change of professional in circumstances where you feel there is a lack of trust or understanding. You will know when you need to do this.

You will learn to ask for help (sometimes unceremoniously). This is something I wish I had learned sooner. It took me four and a half years to actually open up to a professional who could help us get the respite care we needed to keep our family on an even keel. It wasn’t pretty. Something akin to hanging a dirty nappy on the door, which one of my favourite SWAN bloggers made famous with her post on Complicated Gorgeousness about the lengths some parents have to go to in search of respite care. It shouldn’t be like this but often it is. Ask for help. Loud and clear. And do it now, don’t wait until you are at crisis point.

You will see the best in humankind and it will make your heart swell. And sometimes you will see the worst and it will make you want to sink into the ground. But most of the time you will just see people, normal people. Some who can answer your questions, some who can’t, and plenty who want to ask fountains of questions of you. Consultants, educational psychologists, social workers, parents of disabled children – these are all groups of people I had preconceived ideas about. And in the most part, I was wrong. We are all just people, for the most part trying to do our best in life and be fulfilled and happy. Remember that always.

You will find people just like you. You are not alone. There are thousands of families with children posing similar quandaries to professionals all over the world, who have complex conditions and no diagnosis, despite years of testing and the best, cleverest minds in genetic research on the job.

These people will hold you together when your child stops breathing and you are in an ambulance racing to hospital with a child in status epilepticus, not knowing if he will pull through.

These people will help you when you have to fill in 40 pages of disability living allowance forms that are not written with complicated, undiagnosed conditions in mind and you have no idea where to begin.

These people will celebrate with you when your child takes a small step that for them is a gigantic leap. Putting a spoon in their mouth for the first time, turning the page of a book, smiling in response to your smile, or squeezing your hand with affection.

These people will laugh with you, cry with you, rant with you, stand and campaign with you at Westminster, share your ups and downs, solve problems with you, hold your hand and drink wine with you.

These people are everybody who makes up the community that is SWAN UK, the small but growing charity that supports families who have children with undiagnosed syndromes.

Through SWAN UK we have found our people. Without them we would be lost.

Friday 29th April is Undiagnosed Children’s Day. On this day, we celebrate the support and love of SWAN UK, raise awareness of undiagnosed genetic conditions, and reach out to other families who may be feeling lost, or alone and unsure where to turn to for help.

Every year, as many as 6,000 children are born who have undiagnosed genetic conditions. They, and their families need your help. SWAN UK cannot keep going and keep delivering the support that it does without funds. This is why Mr K ran the London Marathon last weekend for SWAN UK, raising over £3,000 for the charity. You can still sponsor him here. Thank you.

I would also like to say thank you to all the professionals who are part of Team Orange, who help us negotiate this untrodden path. There are too many to name, but a special thank you goes to Orange’s school team, his school transport escort, his disabled children’s social worker and his school nurse, who provides our respite care. Thank you. We absolutely could not do this without you.

To end, here’s a little video with some great tips for professionals on how you can help families who have an undiagnosed child, and some lovely stories of professionals who are worth their weight in gold, who have gone above and beyond to help families with undiagnosed children.

Happy UCD2016!

What’s your why? #whyirunldn (Well, not me…)

Orange with the marathon number

Watching the London Marathon on the television as a child, I always used to think it was totally amazing that a human being could run 26.2 miles. It seemed like such a super-human feat when I was six. And thirty years on it still does. Which is precisely why it’s Mr K rather than me heading out there tomorrow morning with a six figure number strapped to his chest, an electronic tag on his shoe and vaseline in interesting places.

I often used to wonder why people did it? Why volunteer to put yourself through that? Blisters, chafing, awkward toilet trips, hmm, no thanks. But as I got older I started to understand why people challenge themselves to their limits and sacrifice their own comfort for the good of others.

And then we had Orange.

And then I was grateful to all those tens of thousands of runners who determinedly put one foot in front of the other for mile after mile after mile. And I began to realise that events like the London Marathon are so awe inspiring not just because of the superhuman physical and mental challenge, but because it brings people together.

It is people at our best. Regular, common or garden folk challenging themselves to do something super human, very often for other people who need help.

Every one has their own reason for wanting to run the London Marathon. Because it’s on their bucket list, because they entered the ballot for a laugh and got a shock when the pack dropped on the doorstep announcing ‘You’re IN!’, because they are an athlete, because they want to prove to themselves or others that they can, in memory of a loved one, or because they are raising money for a charity close to their hearts.

The reasons for running are many and varied but for us, for Mr K, it’s because having Orange has opened our eyes. Before we had Orange in our lives there was a whole world we didn’t understand, because we thought it didn’t apply to us. But it does. It applies to anyone and everyone in humanity.

Anyone and everyone could, one day, have a disability. Or a child with a disability. Or a parent who becomes disabled in later life. Anyone and everyone could, one day, become a carer. And while life is easier today for people with disabilities in the UK than it was even five or ten years ago (big up to the DLR for the wheelchair lifts and the Excel Centre for the Changing Places toilet by the way), it can still be a very hard place to be.

In our family, we don’t seem to like to do things the straightforward way either, so of course it should be no surprise to us or anyone else that in having a child with severe and complex disabilities, we also happen to have one who has no diagnosis for his condition. We have absolutely no idea why Orange has the disabilities he has and just about every medical test he has ever had (there have been many) has come back to say he is ‘normal’, whatever that means.

On 29th April 2016 it is Undiagnosed Children’s Day, led by SWAN UK, the small but growing charity that supports families like ours who have an undiagnosed child. It is no exaggeration to say that without SWAN UK we would not be able to cope with all the uncertainties and difficulties that come our way because of having a disabled child who has no diagnosis. With no diagnosis there is no prognosis, no known future, no pathways of care in the NHS to follow and no known programmes of therapy that can help. Everything is an unknown.

But we are not alone. There are thousands of families facing the same challenges. The daily challenges of disability but also the additional load of uncertainty that comes with having no diagnosis (disclaimer: people with some diagnosed but rare conditions face this uncertainty too).

And so, that’s our ‘why’.

Why wall

Today, Mr K took Orange over to the Excel Centre to get registered for the Marathon. While they were there they took a little video about their experiences and Mr K’s reasons for running London. Have a watch. And perhaps have a think about how you can help.

What’s your why?

Everybody can help to normalise disability, because it’s something that any of us can encounter in our lives, and probably will, in some capacity. It’s a small thing perhaps but a smile, instead of a stare, could change the face of someone’s day.

And the bigger thing is that all too often it all comes down to money. Disability is expensive. Support for people with disabilities is expensive. Support for their families and carers is expensive. So we would like to extend a massive and heartfelt thank you to everyone who has sponsored Mr K so far to run the London Marathon to raise money for SWAN UK.

Thank you.

For now, we are all tucked up in bed in our hotel overlooking the river. Significantly more comfortable than last time I sat up in bed looking out at this view while incarcerated in St Thomas’s postnatal ward, and more recently, in actual labour, with said Orange.

Vaseline is on hand, tagged running shoes are by the door, and a last minute dash for nipple band-aids has been made.

So night night from us, and go, go Mr K! See you at the finish line with a cold pint of London Pride.

To sponsor Mr K in the London Marathon 2016 click here!

Hearts over heads

Hearts over heads

Earlier this week, Katie Price came under media fire for saying she would have aborted her son Harvey had she known about his disabilities when she was pregnant. Perhaps her honesty shocked a lot of people but living in a country where over 90% of pre-natal Down’s Syndrome diagnoses end in abortion, to take one condition as an example, we know that Katie isn’t alone.

Perhaps Katie’s point could have been articulated better (and fellow mum to a disabled child Stacie Lewis, who I feel privileged to know, wrote this wonderful piece in The Guardian), but when I heard what she had said I knew exactly what she meant.

She meant that she would have been afraid.

That she would have ended her pregnancy based on medical prognosis, ignorance and fear of disability, not knowing the characterful, sweet boy her baby would become. Because, in those circumstances, all too often, that is all a mother has.

Since Orange arrived, I’ve met and become friends with a lot of other mums of disabled children. A complete cross section of society that I would not have met otherwise. Different backgrounds, different views, but united in our experiences of being parents to disabled children and the world in which we are raising them.

We all adore our children. Knowing the little people that they are and the love we have for them, I don’t know a single parent who would wish to turn back time and experience life without their child. That thought is as unpalatable to us as it would be to any parent. Contrary to what some of society may think, our lives would not be better without our disabled children in them.

Before I had Orange I would have mistakenly and quite offensively believed that life with a disabled child would be tragic and terrifying, joyless, isolating and punishing, and that the hardships would far outweigh love. Being frank, I would have believed it to be the end of any life worth living. I would have done anything to avoid it.

But I find myself in an uncomfortable situation in discussions like this because I don’t know any other mothers who have experienced quite what I have and it’s not something I talk about often. About a year before we had Orange, I had a termination. We were told that our baby had heart conditions that were ‘incompatible with life’ and that there was ‘very limited chance of survival’.

Before we even knew the underlying diagnosis (Down’s Syndrome) that had caused our baby to be so (apparently) desperately and terminally unwell, I had decided to end the pregnancy.

Because I was afraid.

Afraid of giving birth to a dead baby but even more afraid of what might happen if he lived. I justified my decision based solely on what the medical prognosis had told us. That my baby was probably going to die anyway and if he survived the pregnancy his life would be short and painful.

I was afraid. But I thought I was doing the right thing. For him, for us, for Bea.

If we had never had Orange, I would still believe that the decision I made on 29 January 2010 at four o clock in the afternoon was the right one. And I would never have questioned that what the medical prognosis told me was correct.

The tears I cried as the theatre team at St Thomas’s chirpily asked me ‘what procedure are you in for?’ while they placed the needle in my hand and the deep relief I felt as the gas washed over me and turned off the world, and drowned my fear for the sick child inside of me, are etched in my heart forever. It felt wrong, in my heart. In my head, I believed I was doing the right thing.

And now?

Now I question that medical prognosis that drove me to have that termination. Now I know too many children, alive, and beating the odds their parents were given. Children, who by all medical accounts should be dead. I question the decision I made. Now I am no longer afraid of disability and now I know that medical prognoses aren’t always right, I wish I had let nature take us on whatever path life had in store for us.

Now I count my blessings for Orange. I am thankful every single day of my life that I didn’t know when I was pregnant with Orange that he would have disabilities. Because again, I would have made a decision with my head, not my heart.

A decision based on scary lists of symptoms with big medical words like hypotonia, nystagmus and status epilepticus.

A decision based on what I thought I knew about the hardships of disability with no knowledge of the sweet, gentle soul I gave birth to, the easygoing and peaceful baby he was, the cheeky Peppa Pig obsessed toddler he became or the cute and funny almost five year old he is today, with his surf dude blond hair, a divine appreciation for the ridiculous, lover of cuddles, Bert and Ernie, rugby and bananas.

A decision based on things I had no direct experience of but my preconceptions would have told me I couldn’t cope with, not allowing even a chink of possibility that life and love would carry me through and leave me stronger and happier on the other side.

A decision based on what I might have mistakenly thought would be best for Bea, with no knowledge of the fierce sibling bond they would develop and the adoration Orange has for his devoted sister.

A decision that, for me, I now know, in both my heart and my head, would have been the wrong one.

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We lose ourselves in books, we find ourselves there too

What on earth could be more luxurious than a sofa, a good book and a cup of coffee?%22

 

As a lifelong lover of literature, I have always cherished the ability to pick up a book and disappear into it. To make sense of the world around me through stories. To try on situations and characters for size, within the safe confines of someone else’s words and the expanse of my own imagination.

So when I lost the ability to pick up a book and disappear into it I knew for sure that something was wrong. New parent tiredness, perhaps. Pick up any top tips article on ‘things you should do’ before your first child arrives and reading is always on there – “read books!” they say, for you won’t have the time nor the inclination once you have a newborn.

How true this was. So after Bea was born I stepped away from the bookshelves in the confidence that one day, when life was less baby armageddon, my reading mojo would return.

But just as I was coming out the side of baby armageddon round one and starting to feel like a trip to Foyles to browse for something wonderful to disappear into, Orange arrived.

A gentle and unassuming little soul, Orange arrived into the world as a sweet natured baby who slept well, fed well and demanded not very much at all. There was no baby armageddon this time. But just as we started to find our stride as parents of two, and the newborn haze began to lift, the foundations of our lives shifted.

It wasn’t a sudden shift. It wasn’t even definite. In fact there were many times when I persuaded myself that our lives hadn’t changed at all, and that I was panicking unnecessarily about Orange’s stiff neck and floppy little body. Because no-one knew what they meant or even wanted to hazard a guess. But the uncertainty grew over me like a mushroom cloud and before long it had consumed my every thought.

I wanted so much to distract myself from the fear that had cuckoo nested itself into my head. To pick up a book and transport myself into someone else’s thoughts, emotions and dreams.

But I could not.

Since those early days of uncertainty with Orange, I have had many a false start in trying to put a light back under my reading mojo. For me, for whom great literature is pretty much up there as my greatest passion, this reading roadblock was like losing a large part of myself. I had both lost and found myself in books, always, and now I found myself totally lost inside my own head. Locked in by puzzles I could not solve and fears I could not quell.

I had always believed that I would relish finding both adventure and comfort in books, no matter what life threw at me. Reading was both a joy and a refuge and yet here I was unable to even pick up a book beyond the smallest collection of well-thumbed and dog-eared Murakami and Fitzgerald favourites. Familiar territory.

Looking back now I know that these three or four books held me in a place where I felt safe at a time when everything else felt dangerous. Where emotions would not spring out at me, unexpected.

So I knew that when my Christmas list this year consisted almost entirely of new reads, that I had turned a corner. A most definite shift.

I had just finished reading ‘Extremely Loud and Incredibly Close‘ by Jonathan Saffron Foer about a little boy’s quest to solve a mystery left after his father’s death. A tenderly written story that cleverly interweaved personal tragedy with the enormity of world events, both recent and historical.

For the first time in years I had been able to allow myself to be filled up by the lives and emotions of the people in the pages I held in my hands. To live their lives in my head. Because my head was no longer full solely of my own.

And so I did what I love to do almost as much as reading. I started a list.

Reading list

And a Pinterest Board

I feel confident in saying now that my reading mojo is most definitely back. But also that I know now the books I can turn to for comfort when life is a little too ‘full’.

And now I’ve got the bug back, I’d love to know what’s on your reading lists for 2016. What have you loved or hated? And what are your go-to comfort reads when you are in the trenches?

“Books are the mirrors of the soul”

Virginia Woolf

 

Lifejackets on

Lifebuoy

“Always wear a lifejacket, it could save your life!”

Living right on the shoreline, we have learned to have a healthy respect for the water. For all its beauty, the sea is a powerful and dangerous thing. If I was the boating type, I would know that without a well fitting lifejacket, I would struggle to keep my head above water if I went overboard.

Given that I am absolutely terrified of ferries, yes ferries (thanks, TV news, for imprinting the Debrugge disaster into my brain at a young tender age), there won’t be much boating action happening anywhere round here anytime soon. But if I was to step onto a boat, I would certainly be doing so with my lifejacket fastened tight.

Sometimes I have likened our experiences of raising Orange to what I imagine it must be like to sail the high seas, if you are a sea-legged kind of person. Periods of calm, serenity, beauty, a feeling of deep connection with what life is all about (and, of course, rather a lot of fun), interspersed with raging storms that you have no choice but to keep your head and steer your ship through if you want to make it to the other side.

Life can be like that for any of us, I know, but in raising Orange we know that he will be dependent on us for life and we must equip ourselves for many a storm to come.

As Orange has got bigger, we have learned that we cannot do this on our own.

For the last few months, we have been testing waters of an entirely different kind. Orange has been going to stay with a respite carer for an overnight stay or two. He has just returned from his longest stay yet – two days and one night – that for the first time we were not too exhausted to enjoy.

For the last two days, while Orange has been waited upon hand and foot, utterly spoiled, and taken out to enjoy the winter sun at Mount Edgcumbe, Bea, Gavin and I have made the most of doing some of the most un-wheelchair-friendly activities we could find.

Seaton's Tower

We have climbed lighthouses. We have ridden bikes. We have walked the seafront. We have swum, splashed and goofed about in swimming pools. And we have eaten rather a lot of ribs. And ice cream.

Ice Cream

The time we have spent together has been golden and we have cherished it because we have been able to focus on Bea. And on ourselves. In a way that we never can when Orange is with us because his needs always have to come first. As they should, because he is the least able to help himself, but as much as I love us all being together and experiencing things as a family, I will be the first to admit that it is hard work.

Which wheelchair shall we take – the all-terrain or the one that actually supports him? Will the wheelchair get in the door? Will there be steps? Will it be warm enough for Orange? Will it be too noisy? Will there be any food we can feed him? Will there be anywhere to change him? What will we do if he doesn’t cope? Bags, medication, drinks, spare clothes, iPads, wheelchairs and an Ernie are minimum requirements for a family day out.

Sometimes it goes well, sometimes it doesn’t, but I don’t think I realised until we had a day out without him, how I am always on high alert and how this can impart an underlying aura of tension into any family activity, no matter how familiar or fun it might be.

Having a day just with Bea meant we could do things on a whim. It’s sunny, great! Quick trip to The Hoe.

Oh look, the lighthouse is open, shall we go up it, YES!

In our enthusiasm, neither Bea nor I remembered until we were halfway up and fully committed to the task, that we both harbour a fear of not only heights but tight spaces. Imagine our joy when we realised, half way up, that it was getting narrower and narrower, steeper and steeper… but because we could focus solely on each other, we worked our way through those fears together.

One step at a time, we climbed. One foot in front of the other, until we reached the top.

Lighthouse top

As a sibling-carer, Bea has learned too young that life can be frightening and unpredictable. That people get sick, and sometimes they die, and not always because they get old. I know she feels the weight of unpredictability in our lives and has taken on more responsibility that she should have for keeping us all afloat.

She has also made some big sacrifices in her life. Age seven, she knows how to give CPR and call an ambulance but she doesn’t know how to ride a bike. With respite care, we can ease some of that burden for her, and for ourselves too. As well as climbing a lighthouse, we were able to take Bea out to ride her bike today for the second time ever.

It’s taking a lot of adjustment to get used to sending our little boy away while we go off to have fun without him. I won’t pretend that I haven’t been eaten alive inside by guilt about that and I won’t pretend that I don’t feel sad when he is not with us.

I do.

And I wish he was right there with us, climbing lighthouses, riding bikes, and splashing and duck diving in the pool. But we have to be honest with ourselves, and fair to each other, in recognising that this isn’t the way our lives can be. They just can’t.

Without respite care, we would be overwhelmed and overwrought. Exhausted. And totally unable to steer our ship through the storm when it comes.

When I am feeling guilty about sauntering easily down the seafront, gazing out to sea and chatting to my little girl while my little boy is being cared for by another, I have to remember that actually it’s good for him too. If he is to have independence, relationships, freedom and confidence in his world he must learn that, with careful choices, he can have fun and be safe outside of his immediate nuclear family.

He has a right to adventure, too. I mean, just look what he gets up to when we’re not around.

Orange wig

“I knew, when I met you, an adventure was going to happen”

Winnie The Pooh

Lifejackets on, folks.

A Cornish Mum