A couple months ago, I had lunch with a mom (her daughter is 23 and has CF). She is doing well, in grad-school, continues to dance, and even with some long stays in the hospital and decreased lung function (85%) this year, is still feeling great. They're dealing with the lovely challenges of health insurance paycaps, and a child outgrowing her parent's insurance. Yay, something to look forward to!
Also, one of my best friends "Gorgeous Hair" has a young neighbor with CF. She's 21, and we all went out together on Monday (dinner and an Improv show). She's intelligent, witty, adorable, and had a lung transplant when she was 16. Her parents each donated a lobe. I know. I didn't believe it either, but it's possible. She explained that when people donate parts of their lung, the existing lung "fills in" the empty space. Incredible.
And yesterday I attended a webcast at our local CF chapter and met a girl who is my age (a ripe old 30) and she also had a double lung transplant, five years ago and is doing great. She looked so healthy I asked her if she had a child with CF.
I also met a dad who has a 15 year old with CF, who wasn't diagnosed until 5th grade. The dad is dealing with the challenges of a teenager who doesn't want to do treatments and take meds. Ahhhh, can't wait for that.
And it was great catching up with some other CF parents at the webcast who are always facing new challenges (allergies, nutritional issues, etc).
As much as I want to reach out and talk to everyone with CF, and ask a million questions, get involved, it is still incredibly difficult dealing with the reality of this disease. Sometimes you need to get through the day by forgetting, and sometimes even pretending that everything will be okay.
The other night I needed to cry, to be angry, and feel sorry for Froggy who doesn't deserve this, for everyone who doesn't deserve this. And even though the webcast was hopeful with new antibiotics, treatments and meds in the pipeline, it's still hard not to think, "This might be as good as it gets." Our healthy 2 and a half year old is as healthy as she will ever be. And when I watch her play, climbing the junglegym, swimming, so completely able and full of life, I can't help but go to that dark place of "is this only temporary?"
There are so many levels of grief to Cystic Fibrosis. It's not like when someone dies and you go through the stages of denial, anger, acceptance... Everyday, every week, we experience a new emotion. One day I feel elation that Froggy lives in a time of progressive medicine, and in the next second, sorrow that we were so unlucky to be the one in 3500, then anger that our daughter has to suffer what we don't have to, and the guilt of being a carrier of a defective gene, passing on something dreadful to our child.
And then we feel grateful that because of this disease we appreciate every moment, and we truly value Froggy's little life. I can't imagine appreciating my child with such a monumental love without the knowledge that we are so incredibly fragile, that our time together is measured in literal breaths.
And then there's hope. Hope is your best friend and worst enemy. Because you need it to get up in the morning, but it also has the ability to make you crazy, when life doesn't turn out the way you want it to...the way you hoped it would.
Being the parent of a child with a disease like CF, you are given an opportunity, to see life in a dark light. It is a constant balance of pain and peace, hope and devastation, sorrow and joy. And maybe that is the purpose of life, to find the balance, to accept the reality, but live in the hope.