It's been almost a week since we launched this page and our YouCaring page and you have amazed us with your compassion and generosity. We've had so many offers of love and support that we are so thankful for, especially heading into Thanksgiving. I know we've got some subscribers now, and I want to welcome you to and thank you for taking some time to walk with us on this journey. I'm going to take a few minutes to address a question I get often "How is Daniel doing?" or the variation "How are you both doing?".
Daniel's illness in the past has often manifested itself in the form of periods of acute illness with him being relatively healthy the rest of the time. Since the BMT, his illness has become more chronic in nature, with some periods being more acute than others. For example, when he gets an infection and ends up in the hospital. Because we're now dealing with a chronic illness, answering that Daniel or I are doing well just feels untruthful to the extreme. As his lungs have gotten worse, Daniel has become increasingly confined to our apartment, unable to work or go to school both because it takes too much oxygen and energy and also because of the risk of contracting an infection. Also, pain is a huge problem for Daniel as he breaks ribs on a regular basis from a deep and persistent cough. We're in one of those periods now as he recently cracked another rib and the pain seems to be getting more difficult to manage. It's hard to come home and see Daniel exhausted from his lungs and in constant pain from his ribs and see all the things around the apartment that need to be done. Right now, we're living from appointment to appointment, hoping that soon we'll just be waiting for his lung transplant instead of waiting to wait.
A more truthful answer about how we're doing is that we're tired. We're tired of not being able to live a healthy and active life together, of not being able to travel or finish school or go for walks. But most of all we're tired of waiting and some days it feels like that's all we're doing. This past week, your willingness to support us and look for a truthful answer to that question has given us just a little more hope and a little more energy. Most of the time, it's easier to give the easy answer than the truthful one, but thanks for being willing to hear the difficult truth even when it's not always comfortable.
I'm not sure how often we'll post on here. When we get major news, we'll definitely post something, but that can take longer than we'd like sometimes. Once he's actively on the list, I'll try to post monthly updates until we get the call.
Have a great Thanksgiving weekend with your families and friends!
Laura
