The last few weeks have been pretty incredible in the EB adoption world. Maggie came home earlier this week, Shon came home very shortly before that (more on that to come!), and Lexi* is coming home so soon! On top of that, I've been swamped in paperwork for my own adoption process of my butterfly! I can't wait to be able to tell you more about that, but right now my heart is heavy with something else...
With Shon & Maggie's homecomings and Lexi's upcoming homecoming, I've been thinking more about those who don't get to come home...those who spend day after day waiting, never knowing if they will be "chosen". What breaks my heart even more is thinking about those who could have been given a chance but died waiting, and those who come closer to a premature, preventable death with every passing day.
This brings me to Travis*. Remember this sweet boy?
(*names changed to protect child(ren)'s privacy)
Travis is the reason why EB Promise started. You can read about it a little bit more on my very first blog post, "Where It All Began". God used him in big ways in my life and, consequently, the lives of many others all over the globe. On October 16, 2016 I posted some heartbreaking news about Travis. We had gotten word that his adoption was no longer going to be happening, that he was too sick to travel, and that he was only weeks or days away from death. I saw a video of his extremely labored breathing that was so agonizing to witness that I could only watch once.
And that was it. We prayed for peace and relief from suffering and pain, and waited for the news of his passing. That news never came. I was nervous to inquire...not sure if I was more nervous to learn that the boy who inspired me to found my life's work was gone or to learn that he was still in inexplicable pain and agony with every single breath he took. But eventually, finally, I asked. It was early February 2017.
And this is what I found: Travis was still alive. He had lost weight and he had suffered what his medical files stated was septic shock in December 2016 - January 2017, had been treated and had survived. He was "hanging in there", as the NGO in his country stated. He was still in critical condition.
The agencies that I had been communicating with no longer had his file (routine protocol in his country for files to be transferred from agency to agency if a match was not found) and so I had little to no way of getting updates. I couldn't stop thinking about him though. In September I reached out to everyone I could think of and the only update that I could get was that this little guy "remains in severely impaired condition". I was at a loss of what to say, what to do, or what even to think about the whole situation. I was stricken with guilt, feeling burdened to once again do something, but I had no idea what could be done. He was so sick and so fragile...would it even be fair to advocate for him? Would it be fair to get a family's hopes up that he could live, only for him to not survive the wait? Would it be fair to put him through the agony of international travel if the stress of that kind of a trip could kill him? There are no good answers to these types of questions.
Tonight, however, it became clear to me. I was talking with an EB mama and this little fighter came up. We both were overcome with shock and awe that he is still alive, still hanging in there. I shared my ambivalence about advocating for him with her, which was the first time I had talked about him with anyone since learning that he was still alive this past September. I expressed my intense guilt for not doing more and the severe aching of my heart. She reassured me, reminding me that I am human and could never have known...that even the leading doctor in the field of EB assured us that he was on the very verge of death back in late 2016. She listened to my back and forth and then she posed a challenge:
"Imagine if he lives..."
Imagine if he lives. Imagine if he is given a chance. Imagine if he makes it out of that orphanage alive and into the arms of a loving family. Imagine.
Tonight I am re-dedicating myself to this boy, because he deserves for someone out there to be imagining his life and his potential outside the walls of that orphanage. He deserves that and so much more. Will it be hard? Absolutely. Is it a risk? Most definitely. But when God commanded me to "DO SOMETHING" in the lives of these children, that command did not come with the words "easy", "convenient", or "emotionally safe" attached to the end. So here we go. I do not know what this is going to look like, except that I know it is going to be hard. And I do want to say that much of what Travis has experienced in his life so far has likely caused irreparable damage. His condition is much more complex than "just" EB (as if EB is not complicated enough already...). He will likely require life-long care. But does that mean that he doesn't deserve a chance? That he doesn't deserve someone out there imagining a life for him beyond his current existence? Absolutely not.
If you're like me and want to fight for Travis but aren't sure where to start, please start by sharing this post. Perhaps add a little description in your own words and share the link on social media. We don't have to know where we are going before we start spreading the word. You never know who may stumble across these words and photos and be forever changed. For more information about Travis or for ways to get involved, please email me - firstname.lastname@example.org.
Thanks for imagining with me, and most importantly, thanks for imagining with Travis. Stay tuned.