“Is Chester going to die” the question I have always expected might be asked and the question I have been dreading, and it caught me completely off guard because the person asking that question is Chester’s five year old brother Oakley. My only saving grace at that moment in time was that I was washing up, so my back was to both boys, neither could see tears welling up and the look of sheer terror that was now on my face.
And as Oakley does so often he stood there patiently waiting for an answer to his question. I couldn’t look but I could hear him fidgeting.
I honestly expected a few more years before having to answer questions like this. My spare of the moment answer with a very shaky voice was “Yes Oakley, one day Chester will die, because everyone dies, no one lives forever” in hindsight maybe not the most appropriate thing to say to a five year old but with very little time to think it was the first thing that came out of my mouth.
We have always been very careful not to talk about Chester as if he is ‘ill’ or ‘poorly’ except for the times when he has actually been unwell. It may sound odd, but we don’t really see him as “poorly”, even though I often find myself saying “He’s well” when people ask how he is doing, when what I should be saying is, he’s fine.
I think it’s important that Oakley sees him as he does any other child. Now of course Oakley sees us doing physio and giving Chester medicines so we have already had to explain this but in his young years and naivety he still thinks it’s normal and every baby has this treatment.
He understands that Chester has to have physio and a very basic idea of why we do it and he often asks why we can’t just take the bugs out of his lungs. Trying to find more simple child friendly ways to explain things is not always easy.
So back to that question……I noticed that he was still quiet, as if sat waiting for more of an answer or even more worryingly was planning his next question.
Luckily this time he was content with my answer as he didn’t ask anything else, although I am conscious that could have been just that his mind had strayed onto something else. But knowing these questions will be asked again is incredibly hard to take.
The hardest part when it comes to questions about CF is the complete uncertainty and unpredictability of it, there are questions we will never be able to answer, because we just don’t know. There are so many uncertainties, every person with CF is different, affected in different ways with different severity so some questions are just impossible.
Then there’s the worry that one day that person asking the questions will be Chester himself, this completely terrifies me because we will have to contend with questions that will be absolutely heartbreaking to answer and with the ability to google his condition we will have to be completely honest in our answers.
All we can do is hope that by the time those questions are asked the much needed breakthrough in treatments, which I believe we are on the verge of hearing about are a reality or even better we can tell him he used to have Cystic Fibrosis.