A CF mom blog broke my heart today. The comments in it broke my heart further. Moms who plan on not telling their young CF kids that CF is fatal. Their reasoning is that it some how lessens the fight, or makes it more difficult. And my heart breaks in a million pieces for these kids. Because like it or not, CF is fatal. And that isn't stopped by positive thoughts and rainbows. Truth, reality, facts, they don't change the fight for a cure, the fight to live. They only make the urge to fight stronger, the will to live even more passionate, because the chance of dying is brought into focus. The following is an excerpt from my comments on the blog, and replying to a mom saying that being realistic makes their fight harder, something that totally baffles me, since we are ALL IN THE SAME FIGHT.
In reply to the blog:
This may seem unwanted, or out of line, but I beg you to not conceal from G that CF may kill him. I'm unclear if you would do so or not by not telling him it's fatal... but I know a number of cystics who had a VERY rough time because their parents didn't tell them that CF was fatal. That learned from playground teasing, or an encyclopedia, or a news article. A pretty devastating way to learn, that really damaged some people, and ruined the trust bond amongst many children and their parents. The new therapies on the horizon are very promising, but it remains that CF will kill, eventually. Parents who didn't tell their now older children thought very much like you that CF would be beaten before it became an issue, and it very well may be, but it very well may not be.
Vertex is the greatest hope in a long time, but it is still not a cure, and it's unknown what the long term battle with CF will look like with it.
Yes, CF sucks. Yes, we need to fight. But hiding the truth, as it now stands, about CF, doesn't make you, or G, or any cystic, any less of a fighter.
And in reply to the comment that said I was making the fight harder:
I'm sorry that you feel that being realistic makes your fight harder. That somehow we are on different sides in facing the same monster. My heart breaks a little for your young CFer... as it does every time that I hear a fellow cystic being withheld information about the monster that lives within them.
I was raised by parents who felt that the most effective way to help me deal with CF, and all of its realities, is to NEVER hide anything about CF. To never shy away from the fact that its possibility of killing me was very high. And I can't thank them enough for that. From the time I was very little, I could ask any question I wanted to about CF, and know that it would be answered truthfully.
I was maybe four or five when I started asking about my future. About maybe what CF meant in that. Very, very young to start asking those questions. And my parents had a choice. Hold on to hope that CF would be cured before my mortality came into question, let me know that the monster within may very well kill me. Sure, this was the mid 1980s, and the lifespan prognosis for CF was very different, but the ultimate outcome was not. This was the time they were finding the gene, and proclaiming that a cure was 5 years away, 10 at most. Surely their very healthy child, who yet needed so much as a nebulizer or a hospital stay could hold on for that long. Surely they wouldn't need to let their preschooler know that she lived with a ticking time bomb. But they did. And I praise them for that. They let me know that CF was very serious, and it was a very real possibility that someday I may get very sick, and that someday CF very well may kill me.
I know. No parent would ever want that conversation. I don't really remember any of this talk. But I do remember always knowing that CF may mean a shortened life. That keeping healthy, going to the doctor, and fighting for a cure were all ways that I could look this fact in the face. It made every treatment, every doctor's visit, and every day worth more, because I knew how vitally important they were.
When I was eight, I learned that a friend, my age, had died of CF. The reality of what death, CF, and everything came crashing in. It was a VERY rough time, but something that I came out the other side much stronger... because my parents were willing to be there, talk about mortality, and acknowledge that there was no way to know what mine, or anyone's future may bring. I emerged from this rough patch a short time later, willing to do all I could to fight... and knowing what was at stake if I didn't. I didn't have to experience years of being unsettled about not knowing why I did my treatments, like some friends whose parents not only hid fatality, but the very existence of CF from their kids. I didn't have to feel like I couldn't trust my parents because they hid something so vital, as far too many people I know did because they found out on their own what CF meant. I didn't have to be shocked by another kid proclaiming "My mom says CF will kill you", as a sickening number of cystics have over the years.
Not admitting that CF is a deadly disease does not change the fact that kids, young kids, kids who are not even teenagers, still die of it today. It's not as common, but it still happens. It does not change that there is not a cure, it does not change that a life is irrevocably altered by CF. Understanding fatality does not decrease the fight, does not make life less lived, and does not end all hope. In my mind it increases all of those things a million times, because all cards are on the table.
ETA: I find it a pretty sad commentary that this CF mom blocked me from following her site. It won't start me from voicing my opinion and the damage that has occurred from not being very frank about the realities of CF.