For Danny it seems his birthday was not overly special… just another day ticked down until he got home from Hopkins. Yes it was his birthday and he was grateful for his hospital “party”- but Danny isn’t a birthday person to start and he seems to be distracted but the current detour of life. Danny doesn’t want to be the hero or the fighter … he is not overly interested in being honored or adored- he would trade it all for his health and to just do life normally.
It is easy to look at that day as sad or upsetting. Danny’s CF is winning, he was away from his family and friends, and likely heading into a phase where bad health will truly be his default. When we go through these patches of time Danny’s eyes always appear a little disappointed to me. Not that his lungs or worse, not that a blockage is back, not that he is locked in a hospital – no it’s an odd disappointment with himself. Those big hazel eyes seem to take in the report of what’s happening and then seem miffed at himself. Like he let it happen again… he lost the fight again… he has run out of time on feeling good again. There are moments he has an emotional response or gets in a funk… there are times when things get thrown and cross words are spouted out- but all in all- Danny usually responds with “ok – what do we got to do to fix it”. I think this is why the transplant decision can be so hard- the ultimate “you have to give up” and Danny just hates that feeling.
As I drove up to Hopkins that day, I reflected on our timeline – the up and down and back and forth. I contemplated the new change in direction we got AGAIN Wednesday night and I released a huge sigh. But as I also took in the beautiful blue clear sky of this unexpectedly gorgeous summer like day, while the wind whistled through my sun roof and I felt the sun’s rays warm my face, I had an overwhelming sense of awe. Yes, the road has been bumpy and often I feel the weight of the unknown or worse the looming worst case scenarios – yet so far Danny has overcome them all. In fact Danny has already outlived his predicted life expectancy several times over. Just a few days old – he was predicted not to live much beyond age 5 or maybe even age 10! Fast forward and high school would be the mountain peak, yet here we are more than a decade past high school and Danny still plans for a full future. We aren’t just surrounded by dark, black clouds of worry – we are also graced with the power of miracles.
As I arrived as the hospital Danny was feeling pretty good – but the visit tended to go downhill and ultimately after his mom and I coordinated lunch Dan crashed. It sounds crazy but it wasn’t such a bad way to spend his birthday. Sitting in that room, quiet, the afternoon sun streaming in and I just watched him sleep. Even while catching some ZZZZs, Danny’s brow was furrowed, his arms and fingers tense – his mom kept asking if he was in pain, but he said no. All I could think was how far he has come, how hard he has worked and yet right now all it seems to be about is the next phase, the next to do, the next thing to prepare for and overcome. Danny is strong and he has battled for a long time – but in reality, it never really stops coming for him. But that afternoon, on his day, these thoughts weren’t of pity or anger for my husband, no they were of great admiration and pride. I dream of taking my running to the next level, or conquering my long road to motherhood…. I hope for the stamina to fight through my career challenges and feel victorious… and here I sit with someone who has chosen to fight every day only to keep finding a new set of demands. How blessed am I to have a front row seat to his ability, to be the leader of his cheering section, and for the days that are just really hard, to be the one whose hand he reaches for – even in the dark of a hospital room.
This birthday, Danny you stand at the bottom of another great mountain – but on this day I only had one prayer: that you feel peace and strength for how far you have already come. You have overcome the odds, you have accepted the disappointments, you have comforted those younger than you, and you have been the definition of hope for so many parents. Somehow in this marathon you don’t seem to get a lot of breaks – the next waves of challenges come quick and your response rate is required to be fast. So when you do have those moments of pause and a moment to pick up your gaze from the path you travel, its to find your wife, your family, your friends, telling you – just keep going, you can do it, don’t quit now…. and its all true. We love you so much and don’t want you to stop going…. but on this day I think we all pause and encourage you to turn around. Look at how far you have come, how strong you have been – no, that doesn’t count much to the battle that awaits you, but the reality that you have already won many times over THAT does aid in predicting your odds. You are a warrior – so go ahead and take a moment to linger in that victory – I am not sure you really ever have.
Congratulations on another year, my love and you know what? Let’s go ahead and cheers to 50 more years – when we are done taking a little break celebrating the first 32.
Thank you so much for reading and remember to make it a great day!