In a fit of manic “to do,” I did a little online research and created a GoFundMe page for Eli.
The day I made the fund was the day after we found out my son had cystic fibrosis. The news, initially, was so upsetting I stayed away from the hospital for a day to play with my daughter and kind of regroup. Then my mind went into overdrive. I thought of too many unpleasant scenarios, including financial, that I probably shouldn’t have thought about. So I wanted to do something…proactive.
I made a post about the fund, then I took it down, because I worried that it was tacky. Many other families raise money on the site for cancer, NICU issues like Eli’s etc… Mark and I still felt unsure.
I hoped no one had seen it. But they had, and they started giving, and spreading it around, for which I’m extremely appreciative.
We are bracing for some kind of financial hardship. However, I will do more research as to what kind of aid might be available to us for two major surgeries and two prolonged NICU stays. Once I learn more about any possible funding sources for CF families I will make sure to share the news. I panicked after being told not to panic when I get a $20K bill for his chopper transport. My insurance plan will cover it. To what extent, I don’t know. That was just the beginning. We will be fine, and work hard to pay off all the costs. My kid is priceless and I don’t mind paying for the best possible care, no matter how long it takes.
Unless you’re fabulously well-to-do, it probably will be a hardship to take care of a sick child who will need a lifetime of medical care. That is one of my concerns and I do feel the need to be honest. This is all new to us and I don’t really know what’s right.
I worried that such honesty would make my ma roll in her grave. Probably not, though. Either way, she grew up in the era where people didn’t put so many intimate details of their lives online. I am a citizen of the Internet, and whether it’s right or wrong, I’ve decided to put my pride on a shelf to harness the power of the www for my child and my family. I also believe shared experience is a powerful and wonderful thing. I hope other cystic fibrosis families find this site, too, so we can trade experiences and tips. And I want people to pray for and think of my baby while he’s recovering from his procedures. This is my agenda…let it be known.