Cystic Fibrosis, Family

Cystic Fibrosis- diary entry from a CF sufferers mom.

I wrote this passage in my journal this afternoon and after re-reading it I thought maybe I would share it with you all- my journal is usually very private so consider yourselves lucky to get a sneak peak! I suppose its just a snapshot of what goes on inside the head of a mom of a CF sufferer.

“I watched a couple of documentaries this morning on you tube, while Joe played with his trucks and trains, about Cystic Fibrosis sufferers stories. To be honest they were very sad and quite horrific to behold but at the same time inspiring and life affirming. 


I look at my little lad who is perfect to me in everyway, padding around among his toys and babbling away and I get overcome by a terrible feeling of loss and grief, mixed with awe and love. It’s hard to imagine that my son has the very same disease that I am watching others suffer with and die from on these documentaries.

How can my baby boy have the same illness as that lady who has died waiting for a lung, liver and heart transplant?


How can this vibrant little creature  have the same prognosis as that girl wheezing and struggling to breathe on screen? That girl whose ribs have broken and diaphragm has torn from coughing and throwing up so much?

It is horrible to think of. Incomprehensible. 

But at the same time I witness these sufferers continuing to follow their dreams, laughing with friends, singing in front of huge audiences, running marathons, raising thousands and thousands of pounds for charity- loving their lives and cherishing each and every moment. 

I see people full of passion for life, who take things in their stride, who look at their own mortality in the face day in, day out and still laugh, and love and smile.

What use am I , sat here, thinking of all the doom and gloom, all the what if’s? and why us?

I would be lying if i said I don’t often feel like lying on the floor at my toddlers feet crying at the inhumanity and unfairness of it all!

But what a pointless waste of this precious, short life?

If witnessing the suffering of others with the same illness as my son has taught me anything, its not how awful life is, its not to sit and wallow in grief and sadness. It’s to take life- my life, my son’s life, my loved one’s lives- in both hands and hold them up and celebrate them and every moment! 


It’s to enjoy, to achieve, to dream, to laugh and to love.

I for one will not grieve my son’s existence. He is here, he is alive and by hook or by crook I will do my best to enjoy him, to celebrate life and to help him love his own life and to be happy

No matter what the future may hold.

Rach xxxx


If you are interested in watching the documentaries I watched they are listed below:



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