A day in the park

A day in the park 

Sounds like a lovely activity doesn’t it? 

But what does it mean for our CCF families?  

For a lot of the families we support this is not even possible as their child is hooked up to a machine that is keeping them alive. All they can do is look out of the window and pray for the day they can get out as a family.  

For others it is a military process, including checklists, medications, oxygen, machines and devastatingly a piece of paper that no parent wants to carry – the one that states no intervention, they are too vulnerable.  There is no room for a picnic, the iPad and the nice essentials.  Then the double, triple checking to make sure you have everything, a plan of how to get there and in some cases, is it close to a hospital? The discussions…is the park suitable for wheelchairs? Are there changing facilities? Is there good phone signal in case you need it? …. Finally ”Is it worth it? Or should we just stay at home?” 

This is the reality for our CCF families and although we can’t fix this, we can help by taking away the pressure of their bills. Allowing those precious moments together to be just that, whether they decide to just stay at home or take the big step to venture out! 

Charlie and Carter’s Mammy Sarah knows this feeling only too well and commented:

“These words really do hit home with me, I remember the very lonely moments looking out of the RVI window watching the families head in to town shopping, whilst I was bouncing our Charlie in my arms, trying to ease his pain, not stepping to far away from his bed as the machines did not stretch that far.   

Then the memories of when we were having a “canny” day and we would attempt to go out somewhere it would take us at least an hour to prepare for this, not only did we have all of Charlie’s life saving equipment we also had to deal with his seizures that would be triggered from us moving him from his chair to his wheelchair, but we would push through as seeing him loving the wind in his face and feeling the sun on his skin, even if it was for a short while, it was a different experience and a treasured memory for us.  We would give anything to be able to do this again”