The calm before the storm

I can’t quite believe my baby boy will be two tomorrow. On this day two years ago I was packing my bags knowing that I would be meeting my new baby the very next day. It was surreal, planned C sections are the strangest feeling. Here I am now, sat wrapping a pile of toys that also double up as great physio, excited but also a little terrified that he will be turning two tomorrow.

That night two years was pretty much the very last night that everything for us was reasonably straightforward and it was the last night I slept in my bed for almost 2 and a half months.

This was the start of my life as a CF mum and the start of this crazy and testing journey, I just didn’t know it yet. I was still “Blissfully unaware” I often dream of feeling that carefree again.

But when I look back over the past two years and see how far Chester has come and how much he’s achieved I have mixed emotions, we have faced some testing times and times when I honestly didn’t think we would ever see his second birthday but we have also had some truly amazing times, not many two year olds can say they’ve been to 6 countries!

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Enjoying lake Geneva

He’s overcome so much, huge hurdles thrown before him, and he still continues to fight and show so much strength and determination.

Birthdays now mean so much more to me now and Chester’s are celebrated in a big way, the uncertainty of the life expectancy of those with CF means we will never know how many birthdays Chester will get to celebrate, but I am confident with improving care and precision medicines that the future is bright for him and he and many others with CF will get to celebrate many.

In the past two years we’ve had too many hospital admissions, 168 days to be exact. In those 168 days I’ve seen babies that have been diagnosed with terminal conditions and it has made me realise that no matter how hard the time you are having there is almost always, someone far worse off. I live by this now, at times things have been bad and I’ve not known how to cope but I then see the strength in others dealing with far worse and I draw from their strength to get through, if they can do it so can I.

I know that this day in years to come will become more and more scary, as we approach the “average” life expectancy it will be terrifying. I just hope that Chester finds the strength to battle on the way he has so far.

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Until then we will continue to celebrate each milestone, we will continue to fight this battle with him and we will be there every step of the way, through the good and the bad. This little guy is as tough as they come and I know he will give CF a good fight.

5 thoughts on “The calm before the storm”

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