Meet Gabe, a precious little boy who has Junctional EB and is on home hospice care. His dad videoed him talking about what his life could be without EB…
“Maybe I’ll hit home runs next time, or shoot baskets, or score touchdowns,
or do anything…I would rather do anything than have EB.”
[Click Gabe’s photo below to see the whole video and hear all of Gabe’s thoughts. As heartbreaking as it is, let’s honor Gabe in his final days by listening to him and allowing his voice to be heard instead of scrolling by because it’s painful for us to see and hear his pain.]
“I would rather do anything than have EB” — those words keep replaying over and over again in my head in Gabe’s sweet voice, a voice that reminds me so much of my Jonah. Oh how much I wish I could take it away from you, Gabe. Since announcing my adoption, countless people have asked me the life expectancy of individuals with EB. That question is almost always followed by something like, “how could you ever adopt a child knowing that you will likely outlive them?” My answer: How could I not? My calling is unique and something that not everyone is cut out for, and that’s ok. And it’s an incredibly difficult and heavy piece of information to carry. Seeing this video of Gabe in his final days really hit me hard, knowing that by adopting a child with EB I am making myself oh so vulnerable to devastating times such as these. So today I am taking some time to myself to pause, reflect, and process. Writing is the best way I know how to do that, so I’ve decided to write a letter – a promise – to my precious butterfly.
To my beautiful butterfly,
I may not have held you in my arms yet, but I already love you more than I ever thought it was possible to love someone. Your life has not been easy, and you’ll continue to face challenges and battle tremendous pain for the rest of your life. EB is unfair and I would do anything in the world to take it away from you. I would take it upon myself for the rest of my life if it meant giving you even just one day free from the its effects. Although I cannot do that, I can promise you these things…
I promise to give you every opportunity in life that I can. I promise to let you experience everything you can and not set arbitrary limitations on you because of your fragile skin. I promise to always hear your voice, knowing that you know your body better than anyone else. I also promise to parent you, to guide you, to teach you, and even to reprimand you in love, but I promise to keep your best overall well-being as my highest priority. I promise to do my best to not hold you back because of my own fear of you getting hurt. You have known more pain in your short life than most, not only because of your EB but because of your experience as an orphan. Even the best care and love from an institution, organization or even foster home cannot replace the care and love of a true family. You bear the wounds from that loss on your spirit and heart the same way you bear open wounds on your skin. I promise to honor that, to sit with you in it, to hold you, to pray over you, and to love you through it. I’ll want to fix it, but I never want to invalidate your experience and pretend that because you now have a family, that pain has disappeared. It may never disappear, and that’s ok.
Very few things are certain in life, and you know that better than most. I promise you all of these things, and I also promise you that I will screw up sometimes. I will hurt you and let you down, and it would be unfair of me to promise you that I would not. I am human, as are you, and we will both make mistakes. We will struggle. But we will struggle together. I promise to never leave you or give up on you, no matter how hard things get. We are meant to be together, this I know for certain. I did not choose you any more than a biological mother chooses her child. God has ordained our paths. I promise to cherish every second that we have together – even the hard ones – knowing the value of each passing moment. We will have such a special life together. It may not be “normal”, but it will be ours. We will have each other. I promise to support you and cheer for you, to let you take risks, to hold you when you fall, to care for the wounds of your body and spirit, and to love you with an unrelenting, never-ending love. This is my promise to you, my sweet butterfly, my precious child.
I’ll love you forever,