Reaching for Daylight

 

     Humans have the innate ability to take things for granted. What does that mean? "Take things for granted." It means to accept or view said noun as a right or privilege. I'm not being unkind, but truly there are so many things we take for granted. I am realizing there are more things than I can count that I personally take for granted. We walk through life expecting certain things, and things go unnoticed because they are the standard - the baseline to life. I know that as life continues on, I will continue to take many things for granted, but I don't want to.

     We have been on 5200 going on 4 weeks now. That's nothing compared to some here, but a lot compared to pretty much everyone outside the unit. We have been separated from our family, our jobs, our lives, our dog, even the sun. Yes, I said the sun. Our son has been in this hospital unit being torn down and put back together. He has handled it amazingly well, but he has still missed being with his siblings, friends, dog, and yes, being outside. I will catch glimpses of him staring at the sky, or even out the window of our corridor. (Which, I'm pretty sure has scared the crap out of people passing by. Which I find quite funny. You have to find the humor in this place, or you won't make it. More on that another time.) We have come to realize that our lives, and the way we live them is not our right - it's a gift.

     Nothing showed me that more, than the experience we had yesterday. Yesterday, our son received a pass to go outside of the unit. He has been doing so well, that the Dr. decided he could go off the unit for 2 hours. He had been reaching for daylight since we got here, and now he was about to touch it. When we opened the door to exit the unit, Fenix slowly stepped across the threshold. You would have thought he was taking his first steps on the moon. In his mind, it probably felt like that. He turned to look at me, and I could see the smile behind the mask. I held back tears as we changed our shoes, and took our son to the elevator. He smiled the whole way down to the first floor. We walked to the door leading outside to the courtyard, and swung it open. The fresh air and sunshine blasted us in the face, and Fenix's smile got even bigger as he quietly said, "I'm outside!" He didn't care about the looks he got, or the smiles of sympathy given, our son was outside. Again the tears tried to block my view. Rude. I pushed them aside again and again as we made our way through the hospital campus. Just before going back to 5200, we decided to go up to the 9th floor to look at the helicopter on the roof. We saw one take off, and the other perched there looking quite heroic. At that moment, a woman walked in from the pad. She was so kind and welcoming. She checked a few things on the flight schedule, and then asked if Fenix would like to go out to sit inside the helicopter! I don't think she even finished asking before he blurted out, "YES!" She spent at least 20 minutes showing us the helicopter. She fastened Fenix in the seat, then let him wander about for a bit. She showed us the city from the rooftop, and when it was time to go, she gave him the sweetest hug as if to say she was sincerely glad she had met him. I think she was, and we were certainly glad to have met her. As we walked back to the elevators, he let out a huge sigh of sheer euphoria, and whispered under his breath, "That was so amazing!" Que the tears...

     We have been waiting for engraftment, which he achieved, waiting for healing which is in the making, and waiting for daylight which he found yesterday afternoon in all its glory. To say we take things for granted seems like an understatement to me these days. Our days and nights on 5200 has shown me that. I walk around completely unaware, or even worse, unappreciative of the life I've been given; unaware of the gifts that are bestowed on us each day we draw breath on this planet. I am choosing to pick my head up. I will choose to look and find the beauty in each day given. I will choose to see the mercy in the mess. And I will choose to find the joy amongst the pain. We have been given life. Some of it we have squandered, and some we haven't. My question is, "What are we going to do after 5200? What are we going to do when there's no more disease; when there is nothing holding us back?" The answer? We are going to live, and live well. We are going to run our race like we want the prize. And we are going to wake everyday reaching for daylight.

Until next time...

 

 


  

 

                     
 

 

And last, but not least...

                                                       

The sad, but possibly scary pic of a child peeking out of the “Restricted Area” corridor. 

P.S. The next big test is his chimerism. The engraftment says he has survived transplant. The chimerism tells us how successful it was. Prayers welcome!