Despite the presence of the MND monster, our seven year old golden haired boy continues to make us smile every day. For almost half of his life, all he has known is the diseased me. He can barely remember when I walked unaided and spoke with an unslurred voice. Happy ever after was stolen from our sweet innocent boy.
He is a good child, kind, considerate and full of fun. Our greatest worry in the early days was the negative affect MND would have on his life. Going through an unpredictible period in life stirs up terrifying emotions. It is hard to prepare for the unknown. There was very little advice forthcoming on how to support a child when a terminal diagnosis is dumped on a family. Finally the voice of reason and experience invited me into her office one Autumn morning: Dolores, the owner of the family-run creche he still attends today, took me in, comforted me and gave me invaluable advice on how to talk to him. She suggested we explain in simple language, a little bit of information at a time and let him digest that. When he needs to know more, he will come back with new questions. This allows us to support him emotionally and gauge his thoughts and concerns. Many times it is his innocent and simplistic approach to my condition that teaches us all how to cope.
Children are incredibly resilient but need ongoing love and support. Our family, friends and community have put a protective seal around him. His school and creche instinctively put this in place. Everyone helps in whatever way they can, always looking out for him. He is an open and chatty child so it’s easy to spot if something is bothering him.
There is a constant stream of medical equipment coming into our home to aid my ailing condition. Every piece is fascinating to a child and requires a thorough investigation – box and all! The most exciting arrival was the full body hoist with large sling. He brought the hoist in to the living room, climbed into the sling with his cat, then raised the hoist to its maximum height of nearly six foot and watched TV – as you do! An electric wheelchair to a seven year old screams “fun, fun, fun!”. When I am not in the chair, he drives it around the house with such precision, you have to admire his skill.
He loves the carers and keeps them motivated by smacking their backsides and tickling them. He adores being in the centre of all the action – he puts on his medical gloves and insists on helping out with the night time routine. His favourite job is rubbing copious amounts of cream on my hands and feet. Once he is in the room keeping us entertained, he is of course dodging his bed time. When they’ve finished he likes to walk the girls out to their car, give them a kiss and hug good night. They have to drive away and beep their horn before he goes back inside.
In his mind the carers are there for his benefit too – well why not, if they look after me, why not look after him too?! On one occasion he asked the girls to give him a shower just like mine. So he got my shower wheelchair, stripped off, popped on my shower cap and shouted out, “I’m ready!”. He was treated like a prince – powdered and puffed from head to toe. He was chuffed with himself, getting treated just like his mum!
We don’t lock doors and hide things from him, that instills fear and exclusion. He is allowed come into the room when I am getting ready but does understand I need privacy occasionally. This took a little fine tuning in the early days. One Saturday morning, a couple of years ago, he was excited his friend was coming over. When his pal arrived he couldn’t wait to tell me so he brought him in to say hello. The only problem was, I was in the shower… There were screams everywhere as my carers jumped in front of me to protect my modesty. The boys, bemused by the commotion, shrugged their shoulders and walked out. Fortunately they were too young to understand what they had done.
Recently, I had to spend time in hospital for the first time since having MND and we were all a bit anxious about it. The night before I was admitted, my sweet boy presented me with ten of his ‘precious crystals’, he told me they would help me feel safe and protected. How could I be scared now, he was taking care of both of us?
We try to make an abnormal situation as normal as possible, it’s the only life he knows. Providing him with a loving and happy home, we hope for the best. One thing is for sure – he is a very special boy.