It has taken me a few days to draw up the strength to write this post. My heart feels like it has broken into a million pieces. If you haven't yet heard, Travis will not be able to be adopted and does not have long left to live. He's had a family fighting to bring him home and a whole community of supporters loving on him from afar, but it's too late. Travis is far too ill and is suffering tremendously. Here's the full update from Caroline after making the first of two trips to his country as a part of the adoption process...
"I wanted to come here to share that, unfortunately, Travis will be unable to be adopted. His condition has severely deteriorated, and he is critically ill. He gasps for every breathe, and is constantly aspirating and choking due to the inability to swallow from strictures. If he was in the U.S. I would have gladly taken him home on hospice, but there is just no way he could travel (and frankly it wouldn't even be fair to him at this point). The various social workers, U.S. doctors I consulted, and the orphanage director all agreed. No one thinks he has long to live, the director even said they wonder every day if it is the last. While it would have been nice to have been told by the orphanage before we came, at least he was able to get out of bed and be held twice a day this week! He is not aware (we also found out he basically only has a well functioning brain stem), but he fell asleep the past two days while I was holding him, so I think he did feel comforted. They said he has a lot of trouble sleeping due to his breathing. So please be thinking good thoughts for all involved and for comfort for T during this time! Do I believe this situation was preventable? Probably. But at this point our anger will not accomplish much, unfortunately. He just needs our love! I am hoping to be able to be notified when he passes. *I realized I didn't specify in the original post... this was only trip one of two, so he would have had to live at least several more months to even be adopted. And even if we were allowed to bring him home tomorrow, no airline would have let us on (even with a nurse, etc.) with the way his breathing sounds. So in some way it was a relief that there really wasn't a decision to be made."
Travis is the reason EB Promise exists. God laid him heavy on my heart, and I mean HEAVY. I couldn't stop thinking about him. I poured through his file and examined every word. I bugged the social worker at the adoption agency non-stop. I stared at his photos and watched the few videos I had of him over and over again. I could (and still can) literally feel my heart ache for him. It feels like my heart is magnetic and Travis is holding an incredibly powerful magnet that is drawing me to him and pulling my heart out of my chest. I even contemplated putting grad school on hold in order to be able to adopt him myself. God used Travis to yell, "DO SOMETHING!" at me repeatedly, so I did. I did everything I knew to do. And then came Caroline - an answered prayer and everything Travis needed in a mother. She was able to move quickly and work hard through the adoption process, and she did exactly that. I felt relieved knowing that Travis would be in such capable and loving hands and dreamed of the day I would be able to hold him in my arms. But not all orphans with EB were lucky enough to have a family pursuing them...and so EB Promise was born. It all started with Travis.
This is not the way this story should be ending. It did not have to happen like this. He should not be in such agony simply trying to BREATHE, yet he is. No child should ever suffer the way he is suffering right now. But I can't change it, and I feel helpless and inadequate. Although he is not my son, I have loved him as if he was since the very first time I saw his photo. I have loved many, many children in my life, but Travis was different. And although I have never held him in my arms, the effect he has had on me is real. The heartbreak that he will soon be gone is tremendous. The knowledge of the extent to which he's suffering right now is a heavy burden.
I know that his legacy will live on in EB Promise and the work that we do will honor him every day, but right now I'm just sad. And honestly, I'm angry. I'm outright furious. This didn't have to happen. The system and the people in charge of it are broken. If only he hadn't spent two years of his life suffering before we knew about him...if only we could have gotten to him sooner...if only he had better care in the orphanage...if only. But the reality is that none of this happened and now Travis and paying the price with every painful, agonizing breath he takes.
This is not right.