‘Grief is my constant companion’
Recently, best attended the gala for charity Together for Short Lives, which supports children with life-limiting illnesses. Here, Rachel Thompson talks about her terminally-ill son, Frank, and the childhood he’s lost…
Sitting down together in the living room, going for walks and kissing your children goodnight may not seem special to everyone but, for us, those simple moments are invaluable.
My husband, Bob, 48, and I have always been close to our three kids – Kirk, 16, Mae, 13, and nine-year-old Frank. But the smallest things mean so much because we don’t know how long we have left as a family.
You see, Frank suffers from a condition that is going to take his life. We have no idea if we have weeks, months or years left with him, so that time is extremely precious.
When Frank was born in
February 2008, he was a mummy’s boy right from the start. He loved falling asleep in my arms, and I hated to stop breastfeeding him when he was 22 months old.
The whole family was besotted by him. Mae loved helping him walk and reading him Charlie Cook’s Favourite
Book, a story about a pirate which he loved, while Kirk preferred it when Frank grew big enough to bounce with him on our trampoline.
I don’t know if it was due to him being my youngest, but he seemed to have the sweetest voice and the cheekiest smile.
A force of nature, always on the go, he had a soft side, too, often clambering into bed with Bob and me for a snuggle. His development was slightly slower than Kirk and Mae’s, but we assumed that was because we all babied him. Usually, he didn’t even have a chance to finish his sentences, as his brother and sister would do it for him.
Then, in July 2011, everything changed. Frank had climbed into bed with us during the night. In the early hours, we were woken by movement. He was having a seizure.
The eight minutes it lasted were the longest of my life. We called an ambulance, which rushed him to hospital, but doctors couldn’t find what was wrong with him.
Although we were sent home, the nocturnal seizures continued, and Bob and I hardly slept as we watched him constantly.
After being referred to Great Ormond Street Hospital in London, Frank underwent numerous tests and scans.
Eventually, he was diagnosed with epilepsy. It didn’t explain all his symptoms, but it was a start. The Muir Maxwell Trust, a children’s epilepsy charity, gave us an alarm to alert us to any changes while Frank was asleep, and he was put on medication to try to control his seizures.
Now, though, Frank started having ‘drop seizures’, where he’d hit the floor with no warning. Kirk and Mae kept
a watchful eye over him and we explained to Frank that he was having ‘naughties’. Thankfully, he didn’t seem fazed by them, just picking himself up and carrying on.
But we were so worried. We’d follow him around and cover sharp corners with blankets, as if he were still a toddler. Even then, Frank would often end up bruised.
Over time, our son began to change. By December 2011, his behaviour had become more challenging, and his concentration was affected by his medication.
By now, it was clear our darling boy was suffering from far more than just epilepsy. In October 2012, we finally got our answers. A neurologist at Great Ormond Street Hospital took Bob, Frank and me aside.
‘I’m sorry,’ he said. ‘It’s late-infantile Batten disease.’
Both Bob and I had come across this condition while doing our own research. We knew it was an extremely rare, incurable, neurodegenerative condition. It caused blindness, dementia and a life expectancy of between just five and 12 years. Frank was four-and-a-half.
Nothing can prepare you for news like that. I went numb, and slowly became aware of a guttural wailing. It took me a few moments to realise it was me. Bob held me tight, and I just wanted it not to be true.
Unimaginably cruel things were going to happen to our son, and I wanted desperately to scoop him up and protect him. But nothing we could do would stop them.
At home, we faced the dreadful task of telling Kirk and Mae. Their little faces were heartbroken. Kirk burst into tears, while Mae didn’t react at all. She was too young to understand such horrible news. But, two months later, she wrote a letter to Father Christmas, begging him to make her brother get better. At first, I didn’t want to sleep, so that I’d never miss a moment with Frank – but you don’t have a choice. You learn to carry on. Frank began to deteriorate. He started to struggle to walk, so we had a lift and hoists put into our home. Last year, we got night-carers in to help with Frank. The complexity of his needs is unimaginable.
But we weren’t alone. Our friends rallied round, his school was wonderful, and my parents were incredible.
The Batten Disease Family Association was great, and so was the Shooting Star House Children’s Hospice, helping us to do things as a family and encouraging Kirk and Mae to take part in sibling activities.
Yet, it was still so hard. Every birthday and Christmas were tainted by the thought that they might be our last with Frank. The physical and emotional demands on our family became exhausting. Now, Frank is nine. He’s blind and suffers from dementia and regular seizures. He can’t communicate and is in a wheelchair that he has to be strapped into. I can’t fathom that our active, loving little boy has been stripped of so much. Although we haven’t lost him yet, at 46, grief is my constant companion. Grief for the little boy I’ve already lost, and the childhood he’s missing out on.
We don’t want pity, though. We just want to help others who might be experiencing something similar, so we’re supporting Together for Short Lives, a charity which helps families like ours.
We know we’re lucky for the time we’ve had with Frank, but it’ll never get easier knowing that, one day, we’re going to lose him. How can any mother ever accept that? There are 49,000 children in the UK living with conditions which mean they may not reach adulthood. UK charity Together for Short Lives speaks out for them and supports their families. For details, call free on 0808 8088 100, or visit togetherforshortlives.org.uk
‘It will never get easier knowing that, one day, we’ll lose him’