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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Lifejackets on

Lifejackets on

“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

A little less whinge and moan, a little more Insta…

A little less whinge and moan, a little more Insta…

So, hello. The blog has had a little makeover as you will see. Hope you like it… After much fiddling around with WordPress in my pyjamas while the weather does its best to get into the house (that’s shoreline living for you), I think it’s almost there.

You know, if I’m completely honest, the makeover is a distraction tactic. I have to come out and say that I’ve had a crisis of confidence over this blog over the last year and that goes most of the way to explaining why I haven’t really posted much. Or at all since August…

On Friday, as I took a windswept stroll on the beach and did some much overdue mental filing, I started to remember why I write this blog, why I started it and what I wanted it to achieve. And I realised that last year I reached a roadblock that wouldn’t let me continue in the vein I had drifted into. I realised that I was backing myself into a corner where the only people who would be interested in the words and pictures on these pages were a small group of other parents of children with disabilities. And that the only times it was interesting to anybody outside of that immediate group were when something tragic or difficult had happened.

Attracting rubberneckers in their droves. Who promptly buggered off again when there was something important to talk about, or campaign for.

This was no way to normalise disability, nor to help families dealing with the same difficulties as ours to be and feel less sidelined in life.

Some changes were long overdue.

It won’t surprise you to read that I find most ‘mummy blogs’ absolutely interminably dull. An Instagram Life, landscaped, filtered, devoid of cellulite and the hum drum. And too many pictures of legs and feet in skinny jeans. But then there’s the odd gem that has you in stitches, or inspires you to try something new, picks you up when you are down or is just so plain beautiful to look at that before you know it, it’s become your coffee break favourite.

While I have no desire to place rose tinted filters on ours lives or take pictures of my feet, I have realised that if I am to speak to hearts and minds, to change opinions or to rally people well beyond the walls of disability to help create a more inclusive world, I need to employ some more magazine style. And some of the tactics learned so well in my career.

I know that if you really want to change opinions and behaviours you have to make something so desirable it becomes normal. And it’s only at the hands of parent carers and people with disabilities who write, blog and broadcast that it will be possible to show that life can be desirable, enjoyable, fun and normal (whatever that is), with disability in it. That we remain the people we are, with hopes, dreams and desires to fulfil. And that we should expect to do so, to continue our lives on the path we set out on rather than being sidelined into a box that says it’s ok for us to be fat and unhappy with homes that look like hospitals and a sudden desire to swap a lovely car for a fricking Berlingo.

Yes, there are hard times. Yes, the world often excludes us and our children. Yes, there is admin and bureaucracy. Yes, there are people in authority positions who think parent carers (read, mothers) shouldn’t work and that we should all be happy to have homes that look like a hospital equipment catalogue. But these are small elements of our lives. A part, not the whole. These are the things we want to change, but outside of that there is much that unites us with everybody else.

I’m not going to kid around here, there is most definitely cellulite and hum drum in our lives, but there is also gloss and fun.

A little Instagram never hurt anyone, hey.

 

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