The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

The Hunt for a Diagnosis - The Emotional Impact.

As part of the SWAN UK blog hop and the first ever Undiagnosed Children's Awareness Day on Saturday 13th April 2013, I am sharing aspects of our lives and our search for a diagnosis for my son Little H.  Yesterday, I explained the science behind his lack of diagnosis.  Today I want to focus on the more personal aspects and the impact a lack of diagnosis has had on the family.


In all honesty, I knew from quite early on that there was something different about Little H.  There's just 14 months between him and his and older brother, so my experience of a newborn were still quite fresh in my mind.  He spent time in the neo-natal unit after his birth, for pneumonia, but was discharged after less than two weeks with no concerns.  Looking back, I suspect there were indicators that we all missed but instead we were relieved to be finally taking our baby home.  Nagging worries haunted me; he slept too much, he showed no signs that he was ever hungry, he struggled to feed, he never made eye contact; but these were all explained away by well-meaning friends, relatives and Dr's.  I convinced myself for a time that I was over anxious, that time in the neo-natal unit had held him back but as time went on I could ignore my fears no longer.

The strange thing was that as soon as the professionals started taking my concerns seriously, I changed my mind completely.  I didn't want the tests or the investigations.  I didn't want a label for my son.  I've worked with many children with autism in the past and I remember one parent explaining how she didn't want her son  'labelled'.  I tried, but failed, to understand.  The label didn't change her son, it simple enabled him to get the right support and helped others understand him.  He was the same boy with or without that label.  Yet as I contemplated the numerous tests to be performed on my own son, in the search for his label, I wanted to bury my head in the sand.  A label would make it all real somehow and despite being the lone voice highlighting his difficulties all along, deep down I'd just wanted to be proved wrong.  A label would change that.  A label would mean I was right.

The investigations began: MRI's, X-Rays, blood tests, metabolic tests, genetic tests - all to find out why Little H wasn't developing the way he should; why his head was so small, why he was so floppy, why he never made eye contact and why he struggled to feed.  I began to see a diagnosis as a positive.  I wanted a name for this 'enemy', this disease that had taken the son I expected from me.  I wanted to know everything I could about it so I could prepare a battle plan and fight to get my son back.  I embraced the idea of a diagnosis and I took to google in an attempt to find out as much as I could - forewarned and forearmed and ready to fight.

I distinctly remember sitting at the side of the hospital bed as the Paediatrician discussed the results of H's chromosome analysis (see 'The Science Bit' for details of that). Mr. M and I sat in stunned silence as she explained that his specific rearrangement of chromosomes was entirely unique and that the squiggles she had drawn on paper to illustrate his chromosome rearrangement was as near to a diagnosis as they expected to get.  I asked for a name, a label, but there wasn't one.  I left, clutching the piece of paper feeling bewildered and empty.  I still didn't know what was 'wrong' with my son.  I still couldn't explain why he wasn't progressing. I had no-one to compare him to, no one to ask for advice, no support groups to join.  There was just H; one of a kind.  I felt isolated and alone, wandering aimlessly in the wilderness, with no path to follow, no handy guidebooks to show us the way.  I was frightened.  Without a diagnosis we had no idea at all what the future might hold.  


  1. This could be our life story. Thankyou for writing it x


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