The Hard Truth

Time to buckle down and write about one of the things that bothers me the most about my current situation. I have done a lot of new things over the last two years, thanks to my declining lung function. Most of those things I have done with little complaint, like start to wear oxygen in public or have frequent courses of IVs. Sure, all of that stuff is annoying, but I just do it.

I don't care who sees me sick or tired or coughing. But when I think about my two nephews and niece seeing me sick, it really bothers me. I don't want their memories of me to be ones where I'm sick. My niece is four and she probably doesn't remember me before I was sick. When her mom says they're going to see Sandy, she asks if I'm at home or at the hospital. If I'm at the hospital, then she asks what they are going to bring me for lunch. She knows the routine. She knows how to make the hospital bed go up and down and how to turn on the tv. She knows that I always have cookies or gummies or pudding cups for dessert. And she knows that I will proudly display any artwork she gives me.

The boys are older, nine and seven, and I know they remember me before I got sick. I want them to remember how I used to be fun and creative and full of energy. That I never said no to joining in on a game of pretend. That I would run and play outside until it was bedtime. That I would climb up the stairs to tuck them into bed. How can I be sure that they don't lose these memories?

During my last hospital stay, my sister and brother in law and my nephews and niece were all together with my husband and I for a visit in my room. We joked about what kind of transplant everyone needed (with mine being obvious!) and what kind of person they were. For example, my younger nephew is a natural athlete and loves all sports, so he became "Sporty Boy." Guess what my nicknames were? "Sick Girl" and "Hospital Girl." Sure, I laughed because it was funny, and true. We all roared with laughter. But I hope that my nicknames change soon.

Out of all the things that have come my way in the last two years, this one is hard on me. I know that my nephews and niece can learn things about this experience, like helpfulness and compassion and empathy. I know that they will be better for it. But it's still hard.