I feel like I keep posting the same thing. Sarah is doing good, bike, shower, walk... and I keep trying to find the next thing or something new that she did today, when I realized it is the same challenge she has. Every day she wakes up and thinks, "today might be the day" and has the same short list of things to do for the day in her room. When hstarts her evening therapies and the lungs haven't come, she goes to sleep thinking maybe before she wakes up. When the morning arrives, she does it all over again.
She said last night that this is one game she can't play everyday. She realizes there is nothing she can do to make the transplant come any faster (short of committing a heinous crime) and it will happen when it does. She is working on figuring out what things give her strength and we are working on surrounding her with those images. It was a nice conversation to have, and one that perhaps we all could benefit from having about our own inspirations and goals.
Her text upon waking this morning was that it felt like Easter and she wished she could put on her dress. The sun shining and a good night's sleep conspired to make her particularly cheerful. I told her we could hide eggs around her room for her to find. I figured it would give her a new challenge.
Finally, a few more thoughts about ways to help and Sarah's post-transplant world. Many have asked about sending flowers, or cards, or doing something nice. As much as she loves them, she can't have flowers in the ICU, and this will be the case post-tx (that's CF lingo-- I'm catching on) as well. Also any cards or mail, should be sent to my parents house so they can be opened for her and she doesn't deal with the envelope that has been handled, sorted, routed, bagged, shipped, and in contact with dust, fungus, germs, etc.
We are all learning the nuance of how to protect her from us, and it is often an odd game. For example, she has to wash bananas in the peel and then wash her hands before she begins eating. Why? Because the outside of the peel is never washed because the fruit is protected. Dust, herbicide, fungicide, insecticide; from jungle to storage to back room of the supermarket, there is a lot of 'stuff' that can accumulate and it gets on your hands when you grab the banana. When did you last think of washing a banana?
So, how to help? First we will be hosting a fundraiser toward the end of the summer/early fall. I will post more as we get things planned and this will help her with cost of living expenses as she recovers from the transplant and won't be able to work. The first 100 days post-tx are considered critical to recovery and she will have many restrictions to her life through that period.
Second, we are bringing her little treats from outside to augment her meals when she feels up to it: smoothies, coffee drinks, malts, fries, really anything high calorie, big comfort that she requests. If you really want to send something in lieu of flowers, send a gift card. Otherwise, I'll have the account set up soon for donations and that will be the other way to help.
Our mantra is, it's a marathon not a sprint. We keep trying to use that mindset to approach the weeks to come. Thanks for cheering along the route!