My son was born 4 months early and was given a 6% chance of survival.
He spent the first months of his life in a high-tech intensive care capsule and was afflicted with several serious problems associated with being born so early.
We have been close to losing him on more than one occasion.
At the age of 3 he was diagnosed with a rare and complex medical condition.
It was a very stressful time.
Spike is now 9. He has an ileostomy (an opening made into the small intestine so that poo can be diverted into a stoma bag on the outside of the tummy) and a gastrostomy (an opening in the abdomen that allows a child to be tube fed), he experiences pain and discomfort and often has low energy. He attends mainstream local primary school, he plays in the street with other children and on the surface he seems a normal happy boy.
But he has to have things done to him that are invasive and horrible. He has times when he can't eat or drink (intravenous feeds), times when he has had liquid feed pumped into his stomach (enteral feeds) and times like the present when he has a combination. And he has had to follow endless restriction diets.
Along with the anxiety of caring for him and supporting his sister Poppy we have spent huge amounts of energy learning, absorbing and sharing information about Spike and communicating with all the different teams involved in his care.
The energy this has required impacted on my ability to care consistently and this in turn has had an impact on family life. I had a career as a massage therapist and writer and switching from being a working mum to caring for a critically ill baby often left me feeling powerless, scared and lonely.
Statistics show that 70% of families with a disabled child experience poor mental health,
1 in 5 families break-up, and 60% reported feeling isolated due to lack of support from social services and education.
Yet now I feel privileged: I am in a very strong and happy marriage; I have a beautiful and caring daughter; my son has survived to be uncomplaining and loving; we have a therapy dog we adore and teams of clinicians who we trust and work closely alongside. But I still swing between contentment and despair. I am conflicted by my role as carer, my desire to be a mum and wife and the need to feed my creative life which has been put on hold. And I feel held hostage to routine and then the lack of it when things fall apart.
If you would like to know more about me, Nicola, click HERE