Blindsided by CF

Having been so incredibly busy lately at work (hence lack of blogs) I have managed to keep the majority of CF related thoughts far in the back of my mind.  I have to admit, I have found the key to it all is keeping busy, both in and out of work, allowing me to think about other things and carry out CF duties like they are routine, without a second thought.

Today was a slightly different story.  Clearly CF felt I was perhaps getting a little too comfortable and whilst out for a family meal to celebrate Mother’s Day early, I found myself completely blindsided. The end result was the need for me to excuse myself from the table in order to go to the ladies and cry.  The tears unfortunately started before I could get away from the table because the waiter was blocking my exit which meant awkwardly that Oakley had already clocked me and begun to question what was wrong.

It’s funny the things that set me off and tip me over the edge, sometimes it can be a song on the radio, for me it is often James Bay or Nora Jones songs that we played to Chester in the Neonatal unit when he was really poorly that take me back to those difficult days and other times it could be a pre-CF or as I like to call it a “Blissfully unaware” memory in pop up in my Facebook memories (Thanks for that Facebook!) today however, was something completely innocent and unexpected.

There we were sat enjoying our meal, I have to admit I was cringing at the two toddlers from the table next to us who were rolling around on the floor licking the dirty carpet.   I noticed three women and their small babies were being seated in close proximity to our table, and my first thought was the hope that my children who were actually for once sat to the table lovely, wouldn’t suddenly change into their feral alter egos and cause havoc, which would in turn mean me getting that “My child will never behave like that look” from the new mothers with their sleeping babies (yet to experience tantrums).

I overheard them talking about what they thought their babies might be when they grew up, and suddenly there I was broken.  Every parent wants the best for their child, these women were no different, but whilst they were sat their wondering if their child would be a Doctor or a Scientist, a bin man or a butcher, I found myself thinking I just want my child to be alive when he grows up.  I want the best for both my boys I would love for them to be Doctors or Scientists, or in fact anything that makes them happy.  But just now, at this moment in time, having seen so many young ones loose this very fight and with no clear certainty for Chester just for him to be able to grow up would be all that I would wish for him.

I don’t think I am alone when as a CF parent I find myself wondering what his future holds and wondering how long will we have him for, and although I am positive and excited by the medical and technological advances, I find myself getting more and more frustrated, wondering what kind of world we live in that we are having to fight as hard as we are for medications that have the ability to help people with CF lead longer and more comfortable lives.  I cannot get my head around the fact that these drugs are out there, ready, and already being used in other countries, but that some can’t have them, because someone somewhere not only put a price tag on them, someone then refused to pay, it just doesn’t make sense.

I want a day to come where I can sit down with my boys and have that conversation about what they want to be when they grow up without feeling physically sick about it.  I want for both my boys to be able to grow up and be something.  I can honestly say it won’t matter to me what they want to be as long as they both have the chance to follow their chosen path.

14 thoughts on “Blindsided by CF”

  1. All of us dealing with this awful situation have been and will be caught out at times. I certainly have been by pre-CF photos and videos. I hope you’re feeling a bit better now.

    Liked by 2 people

  2. It must be so very difficult. Try to keep absolutely positive and strong. I am sure your voice will be heard. Xxxxxxxxxxxx happy mothers day xxxcxxx

    Liked by 1 person

  3. Hi Emma – just a short note I hope will encourage you! I am almost 58, and have CF – and have had a great and full life (still do!). It’s easy to listen to all ‘the experts” out there and become greatly discouraged – but don’t !!! I’m living proof that doctors don’t know everything, and they certainly can’t tell the future. Still work, and have same lungs and all other organs except appendix. I’m currently getting a blog together to share what I’ve done all these years, and it hasn’t been treatments much of time. Will be “coming out” soon, but in the meantime, get an inexpensive juicer and start making your kids fresh carrot juice (add an apple or orange.). That is my best treatment, since 1986 – doctors roll their eyes, but IT WORKS! Daily Daily Daily…. All the best! And wonderful blog!

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