Out into the big wide world they go….

As our social media newsfeeds fill with ‘First day of School’ pictures of their children stood proudly by the front door in their new shinny school uniforms, mine included, I am filled with an abundance of emotions that feel somewhat overwhelming.

As a CF parent the path leading to this exact moment has been full of hurdles and difficulties that have had to be overcome, but more than anything it has taken a lot of behind the scenes work to make sure that we are ready to send him for his first day at big school knowing the school are content with his care and are therefore able to keep him safe. 

I am also relieved that Chester has been fortunate enough to be well and able to start and I can’t stop thinking about those of his friends with CF who are unable to start school as planned because of admissions for CF. CF really is crap!

 I am full of the usual parental nerves, apprehensive as to how he will settle, wondering will he behave, will he understand what is asked of him and most importantly will he enjoy it?

But today, the day before he starts, I find myself feeling overly apprehensive. We have done everything we can over the past four and a bit years to keep Chester well and most of all safe.  I am faced with handing over that responsibility to others, some of which will be complete strangers who may know very little about CF and it’s scary. 

Don’t get me wrong, I am incredibly appreciative of the school taking the time out to read up about CF and for meeting with me numerous times to discuss this next big step and I know they will do their absolute best, but as someone with a vested interest in making sure my little boy is kept away from harm I feel anxious that neither I, his Daddy nor his Nanny (who normally cares for him) will be able to be there for him all of the time and will have to rely on others to be there to watch out for him.

 I am fearful of him being rejected by his classmates, whilst he looks no different and, in most ways acts no different, there will be activities he won’t be able to take part in and there will be activities he may at times find hard and struggle with.  Plus popping pills with every meal will, I am sure be overwhelming for some of the children in his class and will most likely lead to questions.  My biggest fears are that without meaning to be, children can sometimes be cruel, and everyone knows someone that is a bit ‘different’ is often an easy target.  I just hope that the children he will be sharing these early years with are kind.

I worry that I can’t protect him from things he may here, this is especially worrying when he starts to hear about what CF is and what it means to have it….I’m not ready for that conversation just yet.

I am nervous that he may be inadvertently placed into situations that put his health at risk, whether that be being around other poorly children which I have literally no control over or sneaking off to play with mud kitchens or stagnant water because I know how difficult it can be to watch him all the time, and after all, he is a boy and this boy just wants to be like the other boys.

I worry that he will struggle to keep up, having to take time out for hospital admissions and treatment which will see him fall behind but like any parent I want to see him succeed, I want the very best for him and I don’t want CF to hold him back.

 More than anything I am bursting with pride. From day one he has amazed me with his strength and sheer determination. His ability to take anything thrown at him and carry on astounds me. He is simply incredible and I wish for incredible things for him. If I could give my boys the Earth I would. If I could trade with Chester, I would, in a heartbeat.

There were times we didn’t think we would see this day and I am forever grateful that he is still with us, I know that in the Cystic Fibrosis community alone, there are parents whose beautiful children have gained their angel wings and my heart breaks for them.

I know only too well the unpredictability of CF means we never truly know what’s waiting for us around the corner and the harsh reality for me is that whilst I am truly hopeful for the future of our CFers I also understand that we just don’t know how many First day of the school year pictures we will get to share. So despite the moaning and groaning from the few about the clogged up back to school posts in social media news feeds I’m going to stick my fingers in the air and carry on sharing my proud Mummy moments!

Dearest Chester, go spread your wings little man, for I know you are going to accomplish great things.

Now I’m off to sob about the fact my baby is going to school 😭

8 thoughts on “Out into the big wide world they go….”

  1. Another brilliant blog Emma. This precious little man has come such a very long way,, and every single day he astounds me. He has already accomplished so much and his strength and sheer determination should be an inspiration to us. May your furst day at school, Chester, be as wonderful as you are little man xx

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  2. Beautifully written as always and you have worries I know but my little hero will smash this!!! Chester will love it and thrive, there maybe knocks along the way but he will live every minute of it!!! ❤️❤️❤️

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  3. Hope Chester had an amazing first day at school. My 2 grandchildren wcf have had great friends throughout primary school and even through hospital stays they have been very supportive. Children will often accept differences easily at this age so please try not to worry too much.

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  4. Beautiful post Emma. My 9 year old son freddie has some brilliant, understanding, inquisitive but most of all supportive friends and I have some great ‘school mum’ friends who have been wonderful since Fred started school. Wishing you and Chester a very happy and healthy start of term xxx

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