I’m part of a couple of differnt online fora (forums?), mostly for moms but one in particular for people with interstitial lung disease. It’s kind of a slow board, but there are lots of people there with the same disease as me (IPF) as well as many other similar diseases which share many of the same treatments. Some of the people there use the same doctor as me at Ohio State, and it’s nice to commiserate with others who are going through the same thing.
At any rate, I’d been absent from there for a little while with the move and the hospital and all that, but I went back yesterday and discovered that one of the members there passed away. Now, this is nothing terribly unusual; there are a lot of people there awaiting lung transplants and in various stages of health/disease. What made this particular case so striking was that she was only 33, and a single mama to 3 little girls. She hadn’t been diagnosed for very long, and apparently she just got sick and went downhill fast and in a hurry. It was shocking and heartbreaking, thinking of her daughters and wondering if their dad is an active part of their lives and what will become of them. I didn’t know her all that well, but I will miss her presence all the same.
It just serves as a reminder that we’re on borrowed time here. I guess in the end it forces me to be thankful that I’ve done some things for my kids that I wouldn’t have done without this disease to force me to think about mortality. I’ve left them letters and videos and journals, and links to this blog and message boards that I participate in, so that someday, if they really want to know, they can search these things out and know who I really was and what they meant to me (EVERYTHING!) How many parents leave their babies far too young without the chance to say everything they wanted to say?
Still, I feel cheated and like I can’t really enjoy myself sometimes because there is this dark cloud of doom hanging over everything. I don’t want to let my daughter know that I get out of breath doing laundry. I know that she worries more than anyone, and understands more than she lets on. I know that she spent the whole day crying when she found out I was in ICU. I know losing me will be really hard on her, but I know she has strength (she got that from me!) and she will make it through. I hope I’ve done everything I can to make it as easy as possible.
Well, that’s too much to think about on this fine Saturday morning so I’ll stop for now. I hope I live to be 100 and no kids of mine ever have to read this to know what I’m really like because they’re sick of putting up with me.
