My son Salim Dellicker is 4 years old and the light of my life. He became my son on March 1, 2018, in Hyderabad, India and a US citizen on March 22, 2018. Salim has Epidermolysis Bullosa, or EB for short. His body does not produce any collagen 7, which holds his layers of skin together. Without collagen, the slightest amount of friction causes his skin to blister equivalent to a second or third degree burn, or to shear off completely. He has open wounds all over his body at all times and lives in constant pain. He wears multiple layers of bandages neck to toe, 24/7, that literally keep him alive. He requires 3+ hours of wound care and bandage changes every single day. EB impacts every single aspect of our lives and makes even the simplest thing extremely complicated and challenging. EB will shorten his life significantly. But God has used Salim’s EB in huge ways, even in his short 4 years of life so far.
I first heard about EB at a Young Life prayer meeting 11 years ago when a little boy named Jonah was born in Winston Salem. God put EB on my heart in major ways that day and it literally changed my life forever, in ways that I never could have imagined. EB has been a HUGE part of my life for the last 11 years. I knew that God would one day call me to adopt a child with EB, but in my mind the key phrase was “one day”. Never in my mind did I imagine that it would be as a single mom with humble means. But God had different plans. I first saw my son’s photo when I was in graduate school. He was two years old and living in an orphanage in India. I was incredibly intimidated by the adoption process, but remarkably peaceful about the prospect of becoming an “EB mom”. I knew God had been preparing me for over 10 years for this very role. I had a lot of doubts about the process though.
The entire adoption process was about $35,000 in total. This included legal fees, agency fees, travel to India for a month-long trip, and more. I am incredibly blessed to say that my adoption was FULLY FUNDED. This means that between grants, fundraising, and the generous donations of others, even penny of my process was covered. God has His hand in every single step. There were times when I was worried the funds wouldn’t be there. One time I wrote a $780 check in total faith. I hadn’t raised the money yet, as it was early on in our process, but the fee was due and I felt God commanding me to be obedient and trust that He would provide. I wrote the check without the funds set aside. In less than 24 hours, the total amount had come in. Almost to the penny. Throughout our process, we received $12,000 in grants total, including a generous grant from King’s Park. A complete stranger “happened” to stumble on our story and was obedient to God’s call to donate $10,000 to our process. I never had to worry about funding my adoption; God had that taken care of. I could instead spend my time and energy focusing on the rest of the process and what it would take to prepare to parent a child with this terrible condition.
EB is a cruel, unrelenting condition. I adopted my son knowing that it is likely I will outlive him. I don’t care how much you think you prepare for adopting a child you’ll likely outlive (because I sure did think I was fairly prepared), nothing can TRULY prepare you for this…for what it’s like to hold your baby and stare into his eyes and imagine that there will likely be a day when you hold him just like that but when you look into his eyes, the life is quite literally gone. The unknown of how fast his disease will progress…will we have one more year, five, ten, maybe more? But how many of those will be confined to bed/wheelchair and unable to walk or live nearly at all? How many of those years will he be in so much pain that he cannot function? EB is cruel, not just in its outcome but in its slow, unknown, unforgiving progression. I have moments where I let myself grieve, but most of the time we just wake up in the morning and fight another day. We savor each moment a little more, knowing that it is truly a gift. I will continue to discipline my child in love, not letting him off the hook because he has a terminal condition, but also appreciate that he lives in constant pain and I don’t know what that is like. We will continue to walk an incredibly intricate, fine line. I will continue to mess up and ask for his forgiveness, and he will as well. I will do my best to turn my child’s life and future over to God, even though I want to cling to it myself and agonize over every wound and symptom in hopes of just fixing him myself and taking control. I will continue to try and speak my fear to trusted friends and not bottle it up inside. And oh my word, I will keep on loving that child with the fiercest, deepest, most unrelenting love in the world, for every single moment I have with him.