Discovering I was pregnant with Callum was a wonderful, if unexpected surprise; a baby brother for my son Connor! Everything progressed well until Callum suffered oxygen deprivation at birth, resulting in severe brain damage.
At six days old, I was given the diagnosis that would change everything for ever:
‘He won’t walk’
‘He won’t talk’
‘He won’t hold his head’
‘If he doesn’t resolve his feeding issues, he’ll be dead in three to five years’
Blunt, devastating and with no clue that I’d never be just Mum to my little boy because he’d never be able to control his body the way that he should, that he’d need me for everything all of his life. It wasn’t explained that his life was limited because his condition made him susceptible to illnesses that his brother would brush off as a minor nuisance. And it wasn’t just Callum either – Connor had to stop being a carefree toddler, and instead by wanting to help his brother, gradually became a Young Carer.
Don’t misunderstand me, I’m not complaining about the amazing, funny, inappropriate, cheeky monster that was Callum. He enriched everyone’s lives, creating smiles and memories wherever he went. He was pure love and fun with a hint of devilment in there too!
There was just so much involved in keeping with us for as long as possible. Not being able to swallow properly meant permanent tube feeding, a floppy airway meant not taking in enough oxygen and needing monitoring and home treatment. Countless ambulance rides, a bedroom that was more of a hospital ward, hospital appointments, pharmacy runs, meetings. I used to joke that I was his Personal Assistant. Except it wasn’t a joke. Not really.
It might make you wonder how I managed, where I found the time for everything else? I didn’t, not exactly. Everything was rushed, moments snatched and shortcuts found. Thank goodness for online shopping. The overwhelming feeling of guilt was always there – I had two sons, didn’t I? Most days could be classed as ‘barely coped’. That was no life for any of us.
That’s why finding help and support is so essential for families like mine. Together for Short Lives online and telephone information signposted to services and often answered questions I didn’t realise I had. Suddenly there was night care and I could sleep, Young Carers and siblings groups for Connor to be a carefree child again. Our local hospice and hospice at home services took Callum, spoilt him rotten, all whilst giving me time to be Mum. There was advice on the practicalities such as equipment, education and healthcare, taking away some of the uncertainties whilst allowing Callum to maximise his potential. Indoor skiing – check. Indoor skydiving – check. Swimming – of course! It is the most precious thing when time is short, and you don’t know when it will all come to a standstill.
Now Callum has passed away and the hardships are in the distant past, replaced with happy family memories; of day trips and holidays, special-parties, smiles and days of chilling out together watching television. Who knew that something that seems so simple would have such a long-lasting impact?
Jane Green is a member of our Family Reference Group and mother to Connor and Callum, who died in 2014. Our new animation ‘Through My Eyes’ shows the daily challenges that families like Jane’s face caring for a child with a life-shortening condition, and the impact on family life.