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

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

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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Don’t lose your head

When our first babies reached a year old, my friends and I cheerily raised a drink or two to celebrate having kept alive our firstborns for an entire year. Giving birth to, feeding and growing a whole actual human seemed like such a momentous achievement and yet we were able to nonchalantly joke about keeping our offspring alive because we had never yet faced a situation where their lives were ever remotely at risk. We just had to, you know, feed them and love them and stuff.

Even with Orange, we’ve been extremely lucky that he was born healthy and in the first 18 months of his life, faced no immediately threatening health issues, despite his developmental complexities. Of course he threw us a major curveball in the autumn of 2012, when we were just days away from relocating to Cornwall, in that he developed a seizure disorder and gave us the fright of our lives by having six seizures in 24 hours that each caused him to stop breathing.

Our experiences of the NHS have shown us that there isn’t much that can fluster a High Dependency Unit paediatric nurse, but there were several moments during that hospital stay when we were not the only people in the room that had our hearts in our mouths wondering if our boy would ever take another breath.

But he did.

Mr K wrote a guest post for the blog at the time that said everything I was too numb to articulate.

It was the greatest fear I have ever felt and I never wanted to step inside that house or that hospital again. Of course we didn’t have to, for we soon left it all behind to start a new life that represented hope, serenity and a happier future. An escape.

Several days and one extremely nervous journey down the A303 later, we had left well behind us the memories of our boy, blue and lifeless on the kitchen table, the fluorescent hustle of paramedics, the sterility and freneticism of the resus unit, and the deep, deep fear of losing our boy to a type of epileptic seizure which not one specialist could accurately identify.

With a little trepidation, and a lot of hope, we settled into our new lives knowing that it was likely Orange would face these seizures again, but with every day, week and month that ticked by, we slipped further and further from a paralysing state of high alert to a more relaxed way of being.

We worried a little less about who we left Orange with. We allowed ourselves to be excited about him starting nursery. Even letting the telly babysit him while I went to the loo or made a cup of tea became a possibility again. We slept a little more, instead of lying with one ear attached to the baby monitor, tuned in to every rise and fall of his breathing.

With only a few absence seizures here and there, and one small seizure last summer with a slightly juddery but well oxygenated and still breathing boy, his epilepsy was well controlled. We felt confident we knew what we were doing, and I didn’t hold my breath every time Mr K travelled for work, wondering if now would be the time Orange would throw us a big one.

But last week, he did.

With Mr K in Dallas, I was on bedtime duty for the fourth night in a row, and in major need of a gin and tonic. Orange, home early from nursery with a fever, was in bed. Just Beep to contend with. At last, she was settled. And then a little voice piped up.

“Mummy, Orange’s breathing is giving me nightmares. He sounds like a monster.”

I listened at the door.

“He’s just snoring Beep, get back into bed and I’ll go and tuck him in.”

As I opened the door and unlatched his bed, the ‘monster breathing’ stopped. I raised the blanket to tuck him in. Pulling it over his little body I watched for the rise and fall of his chest before closing his bed and saying goodnight. Only that rise never came.

Lifting him from his bed, his stillness crushing me cold, I knew we were here now. This was it. It was a bad one. My head torn between fear for my boy’s life and sadness for my little girl that here she was again, watching her brother clinging on to life.

“He died, but he’s ok now…” Her three year old words echoed in my heart as I dialled 999 and held his airway open.

Desperately following the life support instructions of the emergency operator, I gave him rescue breaths, Beep watching his chest and his colour all the time.

“He’s breathing in mummy. He’s breathing in. But he’s grey mummy, he’s still grey. Orange, you’re going to be ok, the ambulance is coming. He’s breathing mummy, he’s breathing.”

Orange took tight, laboured breaths as the seizure constricted his chest. In, and out. In, but not out. A pause. In again, in again. And out. A pause too long. More rescue breaths.

As the ambulance arrived, my little six year old Beep took charge, running to open the door and directing the crew up to where we were. Bravely, she watched as Orange was intubated on the landing floor. Calmly, she cuddled a favourite toy and went without a tear or a fuss to sleep with our neighbours as I frantically grabbed medication, a hoodie, shorts and a phone charger and leapt into the ambulance with Orange, tubed and bagged and still in the grips of the longest seizure he had ever had.

His pyjamas cut, wires all over his body, oxygen mask over his little face, we raced through the dusky lanes to the whine of sirens and the flash of blue lights. Rescue medication given. But still no change in him. Holding on to the inside of the vehicle as we sped up and down through the windy Cornish countryside, I watched Orange, rigid and fighting for breath. And I lost hope. Gave in to fear.

Is this how it’s going to happen? With Mr K abroad and Beep with no family to comfort her? It’s been 30 minutes and he is still unconscious and struggling to breathe. We’re going to lose him, right here on the A38 in the back of an ambulance, aren’t we?

I wonder when to call Mr K. If we’re losing him now I don’t want to go through this alone. I text him.

In an ambulance. Orange not breathing.”

A second dose of diazepam. I watch the screen as his oxygen sats hover around 50.

A Texas number flashes up on my phone. But I don’t know what to say. Get home? But how? Your son might not make it? But maybe he will? And then I’ve created fear where none belonged.

But then the sats were creeping up. Up and up, 60, 65, 72, 88. The heavy silence in the ambulance was broken by the paramedics.

“He’s going to be alright, he’s doing alright now, he’s doing ok. He is, he really is. Go on, tell his dad he’s going to be ok!”

As we arrived at resus, a now distressed and angry Orange was wrapped in a blanket and carried gently into the hospital. Wired up to monitors, and soon falling into a post seizure unconsciousness, Orange let his exhausted little body rest and I completely fell apart in the arms of my mum who was waiting there for us, not knowing if he would arrive alive or dead.

We watched and waited for Orange to regain consciousness. We watched and waited for any sign of another seizure, expecting it to happen as it had in resus three years before. And again, and again on the ward.

But he surprised us. History did not repeat itself.

In fact, by midnight, riding up to the High Dependency ward he sat up on his trolley and had a good giggle about the fact he was naked in the hospital in the middle of the night.

We were looked after wonderfully on the ward. After a moment of black humour shared with friends about the prospect of a night upright in a hospital chair, a kind nurse brought me an incredible recliner and a pillow. Mum brought me an enormous bag of snacks and a duvet, and some of the essential items I’d forgone for shorts and a winter hoodie in my panic. And the next day, kind and wonderful friends brought in breakfast, coffee, books, toys and much needed hugs.

Our wonderful village and lovely friends, and mum, supported us and held us up when we needed it most.

I thank you all so much everyone who looked out for us, looked after Beep, visited, messaged and called Mr K to make sure he was ok too. I hope we can return these kindnesses in the future.

So now we are home, the adrenaline has subsided, and I am trying not to lose my head. We can’t run away from the fear this time. I can’t leave 250 miles behind me the landing where I kept my son alive while waiting for an ambulance. And I know it probably won’t be the last time I have to do so.

This time we have to face it.

Feel it.

Learn to live with it.

And not be paralysed with the fear of what may come. We must fill our heads and hearts with new dreams and new hopes instead.

 

Weeks like this

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

 

You know you have an undiagnosed child when…

They say there is strength in numbers don’t they? And that’s absolutely what we have found in SWAN  UK. Our children are all so different but the challenges we face in raising them and getting the support they need are often very similar.

As SWAN parents, we all recognise the ways in which our lives have changed. Often we get through the tough times with some pretty bizarre gallows humour (and gin), and can be observed bonding over things most of us never imagined would make an appearance in our lives. Bile bags, anyone?

If you’re a SWAN parent, you might recognise some of these things. And if you’re not, it might give you a small window into some of the little quirks of daily life for parents raising an undiagnosed child.

You know you have an undiagnosed child when…

  • You jump for joy when you see an M&S Food concession opening at your local hospital. No more soggy pasty slices!
  • Your child has their very own Personal Assistant. Perhaps two. And you need another one to manage all their paperwork.
  • People who you have never met call you ‘mum’. In fact, you might as well do away with having a name all together, since most of your post is addressed ‘to the parent/carer of’.
  • You can draw up exactly 2.5ml of Epilim, in the dark, while rubbing your tummy and patting your head simultaneously.
  • You keep a running supply of controlled, mind-altering drugs in your home medicine cabinet.
  • Your house has more lifts than the average shopping centre and more hoists than a construction site.
  • Your child’s shoes cost more than yours do.
  • No matter how hard you try to ‘style it out’, that enormo-seat disguised as a giant bee and the standing frame designed to look like a cartoon monkey are never going to quite fit in with your period-chic/Skandi cool interior design. Because insects and jungle creatures are just so much more tasteful, right? Right?
 
  • You can speak at least three languages that most people have never heard of. Makaton, BSL and PECS. Clever, huh?
  • Your Amazon Prime delivery of coffee beans is the happiest moment of the month. Without question.
But perhaps the absolute number one giveaway that you’re a parent to an undiagnosed child is that it is only possible to make light of having to visit the hospital multiple times per month, or your home drowning in pieces of equipment (that have been given absolutely no aesthetic design input whatsoEVER), because you are not doing it alone.
Before we found SWAN UK we felt utterly alone. It was frightening, overwhelming, exhausting, and we really thought we were the only ones facing the difficulties we faced.
But finding a likeminded group of funny, articulate and clever parents all with their own little undiagnosed dudes changed all of that. Many of them will be friends for life. Having Orange has expanded our lives to include all these wonderfully cool people that we would never have got to know otherwise. And for that, I’m very grateful.
Thank you, SWAN UK x