So, where do I begin? While writing this, one of my favourite pieces of music came known to me as the music to a story tape (yes, I am that old that cassette tapes were considered the height of technology when I was a kid) of my favourite childhood story – The Secret Garden. As I watch my gorgeous little man sleeping peacefully I can feel my eyes filling up out of sheer love for this wonderful little being who came into our lives almost 4 years ago, in the early hours of the morning one bright and sunny Friday morning in April.
The story of the secret garden is one of discovery and realising the value of friendship and love, and of overcoming heartache and obstacles, so for me it couldn’t be a more appropriate piece of music to start writing to. Sam was born healthy and well after a somewhat rushed arrival into the world; the pregnancy had been difficult for me due to my own health issues and despite Sam suddenly deciding to stop growing and arrive a few weeks early by emergency induction, I was just over the moon that our little boy was here, safe and sound.
We had significant issues getting him feeding, and a mess up there over his blood samples meant he was left dangerously dehydrated and we were stuck for a week on the post-natal ward. However once home, things settled into a typical pattern of feeds, sleeping (him, not us), nappies etc. Then at 14 weeks old Sam experienced a seizure and our world turned upside down.
In a matter of hours, Sam had been through a barrage of tests to rule out particular horrors such as haemorrhage, tumour etc., while the seizures continued to hammer him, hard. They did eventually stop thanks to the amazing staff in the childrens ward, who never once left us that night. In the morning we learnt that our beautiful baby boy had epilepsy; and we assumed that we’d get him started on medication and would never need to see another seizure again. After all, epilepsy is the most common neurological disorder in the world, how bad could it be?
We soon learned that epilepsy is a nasty, vicious creature, as our baby boy battled hard to live as the seizures torn into him relentlessly. He developed a rare but catastrophic form of epilepsy called infantile spasms, his seizures simply refused to be controlled by any medication we tried and we could do nothing but watch helplessly as our boys development came to a complete halt. We wondered, more than once, if we’d ever be able to bring him home… if he survived.
The medical team worked tirelessly to help him, but the look in their eyes of sadness and pity told us far more than their reassuring words that sometimes it just takes a long time to find the right meds combination. By the end of Sams first year he was like a new-born; the seizures were every few hours and our gorgeous little boy was gaunt, exhausted and had virtually no quality of life. Our hearts were utterly shattered and any hopes/dreams we’d had for our first (and only) child were long gone.
Grief is a funny old process. It doesn’t have any time limits, and no two people will experience it in quite the same ways. I went through a very difficult period when Sam was very small, where I simply didn’t know what was happening and could only survive a day at a time, holding onto my husband and child for all I was worth. My health both physical and mental suffered terribly. I still grief for what COULD have been, and there are still days when the feeling of guilt is almost overwhelming. But I do know that none of this is anyones fault. Sam is exactly the person he was MEANT to be. This is how he was made, and this is how he is. Without his challenges, I doubt he’d be the same child he is now. Fast forward to March 2015 – Sam is more gorgeous that ever He’s a cheeky monkey who has defied the brutal prognosis of his early days and far from being almost vegetative, he is funny, happy, loving, and a menace who thinks it’s funny to wake his parents up at all hours! In 2013 we finally found part of the answer to why Sam experiences such a difficult to control form of epilepsy – he has a rare brain malformation called polymicrogyria (pmg for short), that affects both sides of his brain at the frontal lobes. His prognosis is still poor – likely to be dependent on carers all his life, severe learning disabilities, cortical visual impairment due to the severity of the seizure activity (Sam is registered blind) etc., but he’s far more than that. His vision has improved with intensive therapy to the point where he CAN see albeit not very far; he knows who we are and loves us as much as we love him… he gives great cuddles and has a smile that outshines the sun. Sam is by far and away the greatest gift in the world, he’s changed our lives in ways we could never have imagined and changed us for the better too. If I could go back in time to visit myself at the very start of our journey with Sam I’d be able to say that it really is going to be ok – everyone tells you that at the start but you don’t really believe them. But it really, really, is OK – life isn’t about what we’re given but about what we make of it! I will admit, in my darkest hours I wondered how on earth we’d ever cope and grieved for the life Sam should have had and that WE should have had. There are still bad days but they’re outnumbered 100 to 1 by the good days – when I come home from work and am welcomed back with a huge grin from my little monkey, and a massive snuggle to make the day all better Special needs are scary, and finding out that your much longed for baby has huge mountains to climb is soul destroying if you let it be; Sam, his Dad and me stand side by side in our journey together, we’re not sure where the destination is but we’re going to make sure we enjoy the ride.
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