Friday, 25 March 2016

Living in Limbo

This is the first of two posts written to celebrate Undiagnosed Children's Day on April 29th and raise awareness of SWAN UK (Syndromes Without A Name) which supports families of children living with undiagnosed conditions.

            Pronunciation: /ˈlɪmbəʊ/
            An uncertain period of awaiting a decision or resolution; an intermediate state or condition
           Synonyms: unfinished, incomplete

In the early days, when Hugh’s challenges and difficulties were becoming more and more apparent, I’d take him to the doctor with each individual symptom and expect a solution. 
·        He vomited a lot – he had tests and we started treatment for reflux. 
·      His skin was red and sore – we were given cream for eczema, began investigations for milk allergies and tried new milk substitutes.
Reflux, eczema, allergies … these were all ‘real’ things.  They presented with symptoms, they were investigated, we were given a name I could google/research and a treatment to (supposedly) fix it.  Job done.

So when Hugh started showing signs of a developmental delay and it was apparent that his head was smaller than it should be, I similarly expected tests, a name and a treatment.  Initially this seemed to be the case – Hugh had x-rays, ultrasounds, an MRI and blood tests.  Labels were bandied about: microcephaly, global developmental delay … but there was no treatment, no pill to take, or cream to apply or quick fix to make this better. 

And the labels we were given turned out to be mere descriptions of symptoms, not causes. 
·         Microcephaly – a small head
·      Global Developmental Delay – Not reaching two or more milestones in all areas of development

Why though? Why?!!! source
These labels told us nothing that wasn’t already fairly obvious.  They didn’t explain what had caused Hugh’s difficulties or how it had happened.

So like an impatient child, I kept asking ‘why?’

And, perhaps naïvely, I expected an answer; a reason.

Initially I thought having a reason would give us a way to ‘fix’ things, and indeed if his microcephaly had been because his skull had fused too early, a possibility that was investigated, then there would have been a treatment that could have helped. However, as time progressed and any obvious causes were ruled out, it became apparent that we wouldn’t be curing anything Hugh had, it would simply be a matter of managing his symptoms and helping him develop to the best of his ability.

When that crushing realisation sank in, the need for a diagnosis was more about finding out what the future might hold by finding others that had travelled that path before.  A diagnosis, I felt, would unite us with other families all facing similar worries and challenges.

I spent many hours on the internet, reading medical journals and googling symptoms, in some vain attempt to diagnose Hugh myself. Hugh had countless tests and visited various consultants.  He had numerous examinations and had photos sent to specialists in other countries.  I waited anxiously for test results, I endlessly phoned secretaries and spent hours waiting for return phone calls and hospital letters. None of which provided us with an answer. 

I lived in a strange kind of limbo. Despite Hugh’s obvious difficulties, I wouldn’t apply for Disability Living Allowance.  The thing is, I wasn’t even sure if he was ‘really’ disabled as we didn’t have a diagnosis.  Without a diagnosis I wasn’t really sure where we belonged, I didn’t feel that we fitted in anywhere. I knew we didn’t fit in at regular playgroups, but when I telephoned to enquire about a local group for disabled children, I explained I wasn’t sure if Hugh was actually ‘disabled enough’ to go. It was both a relief and a punch to the stomach to realise it was, in fact, the perfect place for him to be. 

I assumed we were the only ones living in this strange kind of no-man’s land where we knew something was wrong but we didn’t know what. Initially I didn’t realise there were other people out there also searching for a diagnosis.  It would have saved me many hours of heartache and loneliness and desperation if that had been mentioned to me in the early days.

We are actually closer to a diagnosis than most other children with a Syndrome Without A Name (SWAN) in that Hugh has a confirmed chromosome abnormality.  What that tells us is that we know his condition is something he was born with; we know it is genetic.  What we don’t know is which specific genes or chromosomes have caused his difficulties (it’s like trying to find one misspelt word in a huge book apparently).  Nor do we know if he has inherited it from us or if it is something that happened randomly and spontaneously while his cells were dividing.  So despite having some answers we are still no further forward. 

The thing about searching for, testing for, waiting for a diagnosis is that you expect there to be an end; a point at which you get that diagnosis.  I thought that this period of uncertainty, this limbo, would just be a brief pause on the journey before our final destination.  I thought that the diagnosis was just around the corner – the next day, the next appointment, the next week, the next phone-call, the next test, the next letter. But it never arrived. You can’t live on high alert like that forever though and at some point, I stopped waiting.  I’ve not stopped hoping though, I just don’t find my heart racing at every hospital letter and I don’t ring the geneticist every month.  I still Google occasionally and Hugh’s enrolled on a couple of research studies here and in The States and I chase them up every now and then.  I’m hopeful sometime soon there’ll be a diagnosis but I’m no longer naïve enough to think it’ll change a great deal in our immediate future.

All Aboard!!! source

I guess all the journeys to diagnosis are different; some take longer than others, some start heading in one direction but end up somewhere else and some arrive at the station only to find out that they’re in the wrong place entirely and have to start their journey again!  We’re 6 years into our Journey to Diagnosis but I’ve given up worrying about what the weather will be like when we get there, for now we’re just enjoying the ride on the Limbo Train. 

Thursday, 24 March 2016

Happy 6th Birthday Happy Little Hugh

From here: 

Through 6 years of sleepless nights,
Through 6 years of God knows how many ambulance rides,
Through 6 years of the kind of worry I could never have dreamed of.

Through 6 years of hospital admissions,
Through 6 years of tubes and monitors and alarms
Through 6 years of tears and terror and fear.

There were 6 years of laughter
There were 6 years of joy,
There were 6 years of happiness,
And 6 years of love.

For every time I have cried, I have laughed a thousand times more.
For every second of fear I felt, you have given me an hour of joy.

I love you.
All the way to the moon and the stars and all the way back again.

To here: 

     Happy 6th birthday my crazy haired, morning hating, pink balloon loving, Happy Little Hugh xxx

Thursday, 10 March 2016

Don't Cry, Don't Panic

I don't cry.
I don't panic.
It's a fact I take some pride in.

Don't get me wrong, there's probably not a Disney film on earth I haven't cried at. I cry at songs. I cry at adverts for heaven’s sake.

But when it matters, when I'm needed. I don't cry. And I don't panic.

I sometimes wonder if I cry so much at other things because I've bottled up too many tears. Do all the tears I've kept inside when it's time to be strong spill out during the John Lewis advert? 

But I have to be strong.
So I don't cry.
And I don't panic.

I'll hold his face between my hands and tell him I'm here. I'll pull out the bag and mask, turn on the oxygen and squeeze the life saving air back into his lungs. I'll stroke his hair and I'll tell him it'll be ok.

But I won't cry.
And I won't panic.

The paramedics will arrive and I will tell them the shade of navy blue his face turned and I'll explain how his fingernails went black. I'll list his medications, the strengths, the dosage, the time of day they are given. They'll ask if I'm a nurse and I'll say 'no, but I've done this lots of times before'.

And I won't cry.
And I won't panic.

I'll grab a hospital bag and I'll throw in clothes for us both. I'll take feeds and medications as I know the hospital won't have them. I'll kiss my big boy goodbye, tell him it'll all be ok and take the teddy he wants his little brother to have. 

But I won't cry.
And I won't panic.

I'll carry his limp body, breathing softly, wrapped in a blanket, to the ambulance. I'll listen to the sirens wail and watch the blue lights reflect on the windows of the cars that part to let us through.

And I won't cry.
And I won't panic.

People ask how I do it. And I don't know how. All I know is that I mustn't cry and I mustn't panic.
Not yet.
Not now.
Not when he needs me.

But this time was different.
This time the lump in my throat was so big and so sore I thought I would suffocate. 
I couldn't swallow it down. 
And the tears leaked out.

His life in my hands and I had nearly failed him. 

Under the stark bright lights of the resus room, he lies on the bed, pale but breathing; motionless. The rigours and convulsions of the seizure gone now; this stillness deadly. Monitors beeping, oxygen hissing, the hustle and bustle of the emergency room all feel miles away. I watch his face, take his tiny hand in mine and whisper his name. The faintest of movements as his fingers close gently around mine. He's still there. My boy's still here.

A day later and it's like it never happened. He's happy and smiling and back to himself.

But me? It’s all I can do to stop myself from crying, to stop myself from panicking.  

The memory lurks behind me, a shadow, taunting me with the ‘what ifs’ and the ‘what could have been’. It's the weight on my shoulders, it's the voices in the night.  My heart beats so fast, I struggle to keep up. I hold my breath and have to remind myself to breathe. My jaws ache from teeth clenched too tight. I sit alone in the silent church and light candles. The rivers of tears fall, unabashed.  

I pray it'll never happen again, knowing without a doubt that it's only a matter of time. 

And when it does,
I won't cry,
And I won't panic.