Sunday, October 30, 2011


I'm here in Birmingham with Dan. She was discharged from the hospital on Thursday, but we have determined it was probably too soon. Dan takes courses online, and she had scheduled a proctor to administer her Psychology exam on Friday. And, even though I told her we could just reschedule, she insisted that she be discharged so she could go take her test. I can't even begin to tell you how much I admire the kid. She's not asking for any special treatment. No extended time, no reduced requirements, no fussing over her...

However, once she got home on her own, she began feeling extremely nauseous. She is on a rigorous I.V. and treatment schedule, so the routine has been rough. It's hard to care for yourself when you are sick and, well, unable to care for yourself. So, I rocketed up on Friday night, leaving Micah behind for the rest of the family to care for while I came up to help Dan. I'm glad to do it. In fact, I already asked for Monday off so I can help her get settled in the hospital again if that is what she needs.

Tiffany and Jason, Dan's long-time friends, are here visiting from MSU. We have had a nice, low-key visit. I know Dan has felt bad for not being able to really spend a lot of time and enjoy them. It's hard to do when you are throwing up in a trashcan trying, at the same time, to keep your oxygen flowing freely. But, Tiff and Jason have been great sports, and we have made the best of it.

The thing I was thinking about this morning is how much richer my life is because of cystic fibrosis. (Just so the Universe is clear, though, I am entirely open to a burning bush kind of miracle in which the girls are completely healed of all symptoms and go whistling off into the sunset to live happily ever after.) Cystic fibrosis has made me think about what it means to be unselfish. It also helps me to reflect on how some of my most selfish times with CF have been during hospital stays and times when the outside world looks on projecting that I am the most unselfish Mom in the whole world.

There are moments with this whole journey when I am so sad. Usually when I drive away from Streetman Circle in Birmingham, the tears start and I'm unable to contain my sobbing. There are other moments too. Yesterday, Tiffany, Jason and I went to Wal-Mart and Tiff was telling me all about how she searched for a cat costume for Dan. Tiffany didn't know it because I was driving along with my sunglasses on, but my throat got tight and my eyes started to burn with that lurking sadness threatening to overtake me.

However, the thing I have really learned is to look at the sadness before it invades to figure out where it is coming from. There are so many times when I realize the sadness stems from a deep-seated selfishness. When I leave her behind in Birmingham my sadness sometimes comes from the thoughts: I love her. I miss her. I want her home with us. This isn't fair. I'm not sure how much longer I can do this. If you'll notice, all those thoughts are riddled with "I". Focusing on me has not brought me any solace, peace or happiness, generally. Unless I am able to find a way to focus on my gratitude in the situation instead of what I have lost or what I am afraid of losing.

Sometimes, though, my sadness is not about me. It is about true empathy, compassion and love for my child. And, probably if I give myself a break, my sadness is usually an intermingling of a focus on my losses and fears and a true sadness for my child. The sadness I felt yesterday when Tiffany was telling me about searching for a Halloween costume was just because I want so much for her to experience the joy of Halloween parties and dancing and living a care-free life at college like all of her friends. And, while my sadness doesn't stem from a selfish place, it doesn't help our situation in the moment.

So, in moments when the sadness looms, I have to turn my eyes to God and say, "Thank you." God is all-loving, all powerful, omnipotent and Good all the time. When I remember the nature of God, I can rest in the perceived difficulties of our circumstances. Thank you, God, for a husband and parents who are able to care for my three-year-old. Thank you, God, that I have such a tremendous young woman in Danielle who is blessed with a positive outlook and spirit of overcoming. Thank you, God, for Danielle's friends who love her and visit her regardless of what she is able to do. Thank you, God, for my friends who listen, never really knowing what to say, but always providing strong support upon which I can lean. Thank you, God, for Danielle and Sarah's dad who has become CF Dad Extraordinaire in his own right. Thank you, God, for healing Danielle in your perfect way. Thank you, God, for taking care of Sarah and watching over her health. Thank you, God, for Micah who provides love and laughter to our family. Thank you, God, for this life that was perfectly designed for me to bring me the most love, the most joy and the most blessings of any other life I could have had.