And just like that he is 6….Where the heck did that time go? I can’t quite believe I have been loving this little fella for 6 whole years! As a CF parent, I go absolutely over the top on Chester’s Birthday and for obvious reasons, but I find as much as it is a time to celebrate another year of Chester absolutely smashing life and kicking the hell out of CF, it’s a very difficult time for me personally. My social media accounts lovingly reminding me of the moments that my fellow CF Mum friends and I often refer to as the “Blissfully unaware” moments, which can be very difficult, the moments where I really had no idea what was about to happen and how much my life was about to change, where life was…. well, carefree and simple.
I find that as the years have gone by, there are certain things that still really get to me, the last photo of my bump before Chester was born, the Facebook post announcing that I had given birth to a Baby boy that say “Mum and baby doing well” and all the hundreds of pictures we took of that little salty bundle in the hours after his arrival as we marvelled over our new tiny human. As well as the photos and the social media posts, there are a whole host of dates etched in my memory, that as of today I know are imminently inbound and I am approaching those as we move towards the dreaded diagnosis day later this month, so I am now mentally preparing myself for this emotional roller coaster ride of a month. I find myself wishing I could just forget them, that I could push them out of my mind and carry on with life, but I have never quite managed to do this, I’m still learning to live with CF…..but as time goes by, who knows, maybe one year.
Today, on his special day I am full of emotion over the little things. I look back at all this little guy has accomplished, the fights and battles he has had with CF, the numerous conditions he has since been diagnosed with and I can’t help but look at him in absolute awe. He takes everything as it comes, generally with a smile, his resilience and adaptability are second to none. He has faced endless admissions, has been poked and prodded, scanned and jabbed and has been so debilitated he was unable to get out of bed without getting out of breath. I have seen him so poorly that I honestly thought we would lose him, but every time he fights back with a strength that I have never seen in anyone else, nothing seems to faze him, he has started school, he has travelled and he has even climbed Snowdon which was no easy feat, he is doing things some kids without CF couldn’t even accomplish and that is the true testament of his strength, determination and courage.
I look back at when Chester was small, when I prayed for the time when life would become a little easier, when he would be mobile and more active so he could help shift mucus on his chest alone by jumping, huffing and coughing, when he would be more physiotherapy compliant and help to do his own treatments, and for the times when he would be able to talk to tell me his belly was sore, or to tell me he was feeling short of breath. The reality is that whilst some aspects are getting easier, we are faced with new and sometimes tougher challenges.
Chester is becoming more and more aware that he is different to other children, he takes pills, he does physio and there are activities he isn’t allowed to do and this brings new challenges and frustrations. As he becomes more aware I am growing ever conscious that I have to do what I can to protect him from the reality of CF until he is old enough to fully understand, this means as with any child to be honest, closely watching his online access and explaining as carefully and as truthfully as I can about CF without having to disclose the full facts. It is difficult but we are managing it, I know that there will come a time when we have to have those difficult types of conversations, but for now I am not ready for that yet and with life expectancy ever increasing with new drugs and treatments, I pray that by the time those conversations reach us the news will be much more positive.
So in the meantime here’s to another Birthday, to lots of cake and especially lots of candles to blow out, but more importantly here’s to a weekend of constructing Lego sets.
Happy Birthday Chester, keep kicking butt!
10 thoughts on “And then he was 6!”
Amazing. Absolutely amazing. Xxxxxx
I too have heart-wrenching memories of my son and his wife with their first child, which no idea of what was to come with the second (and third). Will Chester be able to take one of the new modulators now he is 6? They have really made a difference to so many people. I do hope he will benefit.
Hoping that he will get Kaftrio soonest 🤞🏼
Both my gs are on Orkambi at the moment. Older one will be 12 end of August so will switch to Kaftrio then. Younger is 9 but his clinic hope he will also switch this year when approval is received. It has made a noticeable difference for weight gain
That’s great, unfortunately we don’t have the right mutations for Orkambi or Symkevi so holding out on Kaftrio 🙂
Beautiful, emotional words as ever Emma.❤️ We know where he gets his strength and determination from. 💙 You are one amazing CF Mummy.😘xxxxxx
He’s made of tough stuff x x x ❤️
Lovely words ♥️ i’ve only just realised you’ve done a blog I’ll be reading it all now. you are incredible ⭐️
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Ah thank you x
Another incredible blog Emma. Your little man has come such a long long way ..he is the most amazing warrior I know .. his strength, his energy and his determination is awe inspiring.