The anniversary of Chester’s diagnosis is the single most difficult date on my calendar.
Ask any CF parent where they were and what they were doing when they received the news their child had CF and I can almost guarantee each one will be able to answer in fine detail. It’s certainly something that I won’t ever forget, the day I became a CF mum, a statistic and joined the CF family.
The wait for the test results seemed like a lifetime, I had been so hopeful, but that was crushed in that single moment when the Doctor confirmed Chester had CF.
I had tried to remain positive, thinking that we could be the lucky 10 per cent with a bowel blockage which wasn’t CF related, because someone had to be that 10 per cent right? The odds were clearly stacked against us and all that hope was crushed with the words “The tests have confirmed your son does have Cystic Fibrosis”.
I still remember the feeling of absolute devastation that came with those words and the deep gut wrenching feeling that made me want to vomit, the feeling of being so overwhelmed with sadness and fear.
I had gone from being in complete control of every aspect of my life, being able to do what I wanted when I wanted, to complete uncertainty and that was incredibly hard.
I remember leaving that staff room feeling completely bewildered, drained and scared, going back to his cot, sitting down, holding his hand and tearfully apologising endlessly for what I had done to him. Like it was my fault, like I had failed in the one job I was designed to do.
I remember wondering what I had done wrong to deserve this, why me, why us, why him. As I watched him peacefully sleeping in his cot I felt completely overwhelmed with guilt.
I remember everything about that day, as if it were yesterday, I don’t think any part of it will leave me, I remember hoping they had got the results wrong, hoping that they would soon come in and tell me there had been a mix up.
Instead steady streams of Doctors, physiotherapists, nurses and other specialists kept us busy, which kept my mind occupied and kept me from google which in hindsight was probably a good thing.
So here we are now, two years on and although I’m dealing with CF, as it’s now part of our lives, there are times I still have “moments”. I still find talking about his diagnosis incredibly difficult, I thought with time it would get easier but I guess it’s still early days.
I still get sad when I think of how I was robbed of that ‘newborn experience’ I had looked forward to so much, bringing home the gorgeous new baby, steady streams of visitors and strolls out with the new little one in his new pram. I find myself looking at other people with their new babies and occasionally still find myself saying “Why Chester”.
I often struggle to remember those early days, all my memories clouded by his diagnosis.
Instead of feeling down about CF this diagnosis day, I am going to try and remain positive, I am going to think about how far we have come, how much we have achieved and I am going to remind myself that although this isn’t how I planned my life or my children’s lives being, there are others out there right now that are far worse off.
I’ve learned to make the most of our situation, we love a lot, we laugh often and we make sure that we make amazing memories and CF can’t take any of that away.
This may not have been the journey I planned but it’s the journey I am on and I couldn’t ask for a better tour guide.