I’ve just completed a survey, asking just that: what is the cost of cmv to my family life?
It’s one I can measure easily, in so many ways.
It could be the emotional cost.
That began with my very poorly newborn and the decision to treat him with chemotherapy type drugs. We went through months fearing for his survival, followed by the dawning of failure to thrive and developmental delays.
All this takes a huge, huge toll.
Living with behavioural issues is like a daily, emotional assault course.
Mike navigates his world in a constant fight, flight or survive mode and we never quite know how he’ll react, which leaves us constantly poised for reaction.
That’s exhausting!
Or it could be the financial implications.
I’m Mike’s full time carer. His emotions mean that he isn’t easily or happily cared for, away from home and his family. For our happier overall and his sense of security, I need to always be there to meet his needs.
A very privileged place to be, but a huge responsibility nevertheless. He comes before anything in my life, without a doubt. It leaves my husband and I taking on very specific roles within our home.
The hardest cost to me, is the future.
Mikey needs me so much.
He doesn’t move forward and develop like other kids, he still relies on us to feed him (yes he can feed himself now, but he still needs our ways and prompts to keep that going) and he’s yet to master sleeping through the night, still regularly waking for us.
I understand why he runs away, why he shrieks, why he cries, why he hides. I’m his satellite navigation on human behaviour and the world.
It’s a constant worry for the future: will he always be understood like I understand him? Will he always function so well if I’m not around?
There are no answers.
Then there are the what ifs?
Mike thrives at school. He has the best personality, always looking to learn and understand. Always doing his best. Nothing gets the better of him.
When I see him succeeding I can never help but think, how would things have been if Cytomeglavirus had left him alone?
No child should have life opportunities changed if it can be helped. No family should live with the heartache we do: if it can be helped.
Mike is our absolute blessing in life. I wouldn’t change him for the world and as much as I hate CMV, it’s a part of him and it’s a part that makes him, as wonderfully unique as he is.
Yet Congenital CMV still forever hangs over us. I wish it didn’t.
*If you have a child affected by Congenital CMV please take ten minutes to complete CMV Action’s research questionnaire and make your difference to the future of Congenital CMV https://york.qualtrics.com/jfe/form/SV_3miPMuKOAUt11QN
