When we found out we were pregnant we were so excited, we had been trying for 6 months. After a typical 9 months of a perfectly normal pregnancy, I gave birth to a beautiful 7lb baby boy which we named Gabriel, after the Angel in God’s Army. Little did we know what a soldier we had and how fitting this name was for him.
Gabriel was prefect. We noticed he was missing skin on his wrist and on his ankle. The Doctor assured me it was nothing to worry about, he must have hurt himself during the birthing somehow. We were also concerned because his circumcision looked abnormal. The skin left looked raw. The Doctor told us it was fine. Two days later we were released from the hospital to go home and introduce him to his big sister Maddison. Everything was normal and fine for about a week. The missing skin had healed and there was nothing to indicate anything unusual. However, he started to get big blood blisters on the heels. Both heels were solid blister. We discussed it with his Doctor when we took him to his 2 week appointment. The Doctor had no clue. Maybe his skin is just soft and he’s blistering when he kicks was the Doctor’s assumption. Come back next week and we will see how it looks.
We went back and it was still constant blistering. Confused and with no idea why Gabriel was blistering, he referred us to a Dermatologist at Children’s Hospital. They had set the appointment for 3 months later. I called and begged for an earlier appointment. My son was blistering and we had no clue why. He was hurting and I couldn’t fix it. They finally agreed. At a month old we went and saw the Dermatologist. After looking at him she said it looked like Epidermolysis Bullosa. I had no idea what she was talking about. I just looked at her with total confusion. They decided to try a test. They took a pencil and spun the eraser to see if they could induce a blister. That was a fail since it just sheared the skin off altogether, so they cut a piece of skin off to send for testing to confirm. She gave us a pamphlet and told us not to Google it.
Being me, the first thing I did was Google it as soon as I got to the car. The more I read the more scared I was. The more pictures I saw, the harder I cried. Telling our family, it was hard to even get the words out. They, like me, had no idea what I was talking about either. I tried not to worry until they received the confirmation, but as a mother, it’s impossible to do that. A month later we returned and got the confirmation I had prayed so hard that it wasn’t. I broke down. My question was mostly Why? Why was my son going to live with pain? Why was there no cure? Why couldn’t it be me? Why just filled my mind. His blistering progressed from his heels to his hands, to his knees, elbows, fingers and toes, back, ears, and lips… the list just kept going.
As he began to grow, the blisters and tearing of the skin began to worsen. I was terrified of crawling, which he began to do at 7 months. His knees looked like he had slid across concrete. We kept it all wrapped to try and avoid as much pain as we could. At 10 months he began to walk. With every stumble my heart would drop. Multiple times his palms were nothing but raw flesh. Keeping him wrapped began to be a problem because he would take the bandages off. This caused so much pain. He would cry and scream. I held myself together as I wrapped him again and rocked him, holding back my tears, until he fell asleep and was in bed. Then I would excuse myself to lose it for a bit. I never have let my children see me lose it. I put on a strong and brace face through the day, and at night, when everyone was asleep, I would let it all out and finally fell asleep praying to wake up from this nightmare.
You may assume because Gabriel’s skin isn’t attached he would just sit around and sulk. However, that idea couldn’t be more wrong. Gabriel is a soldier, he is a fighter (just like his name) he is happy and playful. Gabriel is our rock! His laugh brings smiles to everyone. He talks a lot (much like everyone else in our family), he is aware of what makes him hurt and will some days avoid situations that would hurt. He used to sit down when other kids came his way to avoid being knocked won. However, other days he is unstoppable. He appears to have no fear. Yes, he does get hurt, but after we wrap him again and fix the boo boo he is off again. His strength amazes me everyday. He is a normal little boy who is growing up too fast.
Two years later, Gabriel runs, jumps, and laughs just like any other toddler. He and his sister and his cousin are always playing and getting into everything. Gabriel still blisters daily and the humid Alabama weather isn’t helping at all. He has his good days and he has his bad days. After two years of EB I have finally learned to cope with it. I’m not accepting EB. I refuse!! I will not accept defeat. I will not lay down and give p saying this is it. EB is our life! We will beat this we will find a cure!