Becoming a CF Mom

This summer evening winds down May, and the morning will bring June and what I consider to be the true beginning of summer. I can’t wait. Summer has long been considered my favorite season, a time of heat and sun and the fullness of nature. Summer is the celebration of life.

This transition to June also signifies the end of a very crazy month. On the last day of April, a GI doctor suggested my daughter Jade might have cystic fibrosis. A few more rectal prolapses, some tests, and it all proved true. The past months of paleness, nearly insatiable appetite, and continuing petite “teeny bean” status culminated in this moment of sense. My daughter, who was so healthy for so much of her life, has cystic fibrosis.

I cried when I found out. I was helping prepare a shrimp boil for friends and Layne called me from the road. The sweat test Jade had been to revealed CF. I cried, called my mom, cried some more, and somehow got it together for the shrimp boil. The dinner was nice, something I needed that night.

I like to think I have been strong this month. I honestly don’t know how else to be. I have had a night, years ago, where I think I may have had something that could qualify as a panic attack. No one likes being depressed, upset, but I think I truly hate it. I want to avoid that. Perhaps not in an a sunshiney way, but if I can find a way to navigate hurdles rather than sinking into despair, that’s something I want.

So far, it has helped.

The oddity is May is Cystic Fibrosis Awareness month. Since the diagnosis, I have found CF families spilling right out of the woodwork. I have joined two Facebook groups and received all sorts of phone numbers of people who get there. I have been assured by all that these days things will probably go okay. I am trusting on this. I have hope things will go well, and I hope I have the faith for it all.

I have a strange quirk of researching ADHD and other such things. It’s part of being a teacher, I suppose. This inevitably leads to the mothers of special needs kids, wonderful, strong women who are friggin’ awesome anyway. I admired them.

Am I one of them now? Jade is considered surprisingly healthy in spite of this. We will be doing preventive care for her lungs, but as of the moment there are no lung problems. She has to take enzymes and will be on the Vest, but where does that leave me in the tribes of mothers out there?

I have in the recent past considered and even put into practice limiting my social media, but I suddenly have renewed gratitude for communities. I am grateful for this marvelous internet technology that widens my support network. I don’t know where I lie now as a “CF Mom” but at least I can ask stupid questions on the internet. It feels good.

I think I’m doing okay. Now that summer is upon me I can squeeze in a few temple trips and maybe even meet with the psychologist I can apparently talk to down at Primary Children’s.

Welcome, June. Help me settle down from this crazy month of May.

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