My ex H rang me to say this prog was on so we turned over. Our DS (age 13) has cystic fibrosis and scarily, he watched it with us, as until I switched over, I didn't know exactly what it was about. Ex H just said 'programme about cf on channel 4...' on the answerphone.
I acutally think it's a good thing DS saw it. Since Alice Martineau died a couple of years ago he has been gradually taking the life span thing on board but I have been careful to back it up with the info which relates specifically to him (ie how well he is so far.) (Alice was a talented singer aged 29 who has just released her first album - Daydreams - even though she was on the transplant list. She died before she got the op.)
We also all knew of Nicki West, the lady who was 28 and died 11 days after her interview for the programme (I used to spend a lot of time on the CF forums on the Trust's site last year when I was panicking about DS growing a serious germ for the first time and being on a nebuliser) so I was able to warn DS the moment they showed Nicki that she was one of the ladies I had told him about that had died. I don't go on forums hardly at all at the moment. Some of the adults I had got to know had died within a few months and I found it was interferring with my ability to stay positive and deal with stuff. I am lucky I have to choice to block it out like that, unlike their poor families.
Due to watching the prog with DS, I did not cry at all.. didn't even get the urge to.. not that I'm a hard bitch (lol. well not often!) but because I was keeping up a speedy running commentary for his benefit! In the past, I had watched these progs alone in floods of tears and have then felt 'odd' for days. Just as well I don't 'do' crying in front of other people really!
In truth, my son getting ill and needing a transplant is my biggest ever fear. I am not a head-in-the-sand type person but I can't think about the life span aspect.. so I don't.. but I also can't ignore it so have a great deal of trouble picturing my precious boy as a grown man with a grown up life.
Better treatments are on the way though.. something else to cling to! And he really is very well at the moment. His time consuming treatments long ago became a way of life so that we don't notice the hard work anymore.. he is off the neb (YAY! touchwood!) and is a competitive swimmer for his club.. fastest boy in his age group.. so he doesn't have much in common with the little girls on the TV programme.. and long may it continue.
SJ x