By Mary Jo Burgy
December 30, 1993 was the day we had been longing for. This was to be the birthday of our twin boys. We were as excited as we were scared. I had the “perfect” pregnancy. I gave up all the bad stuff and ate all the good stuff. All the tests indicated that they were healthy and ready to meet the world. We filled the nursery with two of everything. We talked of little league, climbing trees, riding bikes, high school sports, and all the girls hearts they were going to break. We were ready for anything, or so we thought.
At 8:34 and 8:35 am two beautiful boys came out into the world filling the room with their loud, healthy cries. We had done it. Good health and care over the past nine months proved successful. Moments later we would discover that all was not right with the world. There was something wrong with Twin 1 (Andrew). His nail beds were purple, he was missing skin on one of his fingers and he had blisters on his lips. They tried to assure me that all was okay and they would have a dermatologist called in to check him over. They brought him to me and laid him on my chest. He looked healthy to me. He was crying and crying. I talked to him and he stopped crying, he knew who had him. During the next hour or two my husband, myself and my mom spent time checking Alex and Andy over. Passing them around, taking pictures and examining them to see what parts of them looked the same. When up in our room they took Andy away and said that he needed to be in the NICU and needed to be isolated.
Having just had a C-section I was heavily medicated and do not remember a lot about what happened next. My husband went with Andy and later I remember he said that things weren’t good and that the dermatologist was going to come to talk to us. I looked around the room and I saw my mother crying, now I was worried. The doctor told us that Andy had Epidermolysis Bullosa, a rare skin disorder. He stated another boy was born in the same hospital a few years ago and the family was on their way to the hospital to talk to us. Looking back on things now, I’m glad that I had medication go get me through this. I kept calling the NICU to get updates on Andy. I felt such a loss not being there for him and not being able to breast feed. I asked to go down there to do that for him, but they stated that he would not be able to due to blistering. I still did not have a firm grasp on what this disease was. I was finally able to go see him. There was my little boy in a glass box wrapped with gauze and boo-boos on him. When they handed him to be he was on a large piece of wool. I didn’t think that I would ever stop crying. How could this be happening? I did everything right. I immediately blamed myself. I’m the one who carried him the last nine months, I must have done something wrong.
Later they explained that it is genetic. It was nothing that I did. No one on either side of our families had anything like this. They explained that Andy’s body will be covered with blisters and missing skin. His hands and feet would web together. It would involve his esophagus and mouth. His nutrition would be compromised. This was all so overwhelming and frightening. Before we took Andy home we had to learn so much about him. We had to learn how to hold him, feed him, change him, what clothes he could and could not wear, etc. Most important, we had to learn how to take care of his skin. This meant learning how to wash him, pop his blisters, bandage him and protect him from infections. The hardest part was the day when I had to leave the hospital without one of my babies. I just wanted them to both be home with me. Many people say that they could never do what we do everyday. When you see your son needing help, attention and love, you would and could do anything for him. My husband and I were committed to making this work and to make our son better. We would soon find out that we could not make him better, but only care for him the best we could.
Finally with both the boys home we were ready to go on with the rest of our lives. We learned quickly how to bandage and were doing his dressings in record time. Mechanically things were going well, emotionally it was tough. We were basically alone other than visits here and there from family members that lived out of state. Having twins is difficult, but having one with difficulties almost seemed impossible. EB is a painful disease. Having to hear your child cry daily from dressing changes and baths, it breaks your heart and leaves you feeling helpless because you can’t do anything to take the pain away. There were many times after his birth that we wished his life would end. He could go to Heaven and be pain free. It was not fair for someone so small to have to endure this. There were many times when I would just break down. I would hold Andy and tell him over and over again how sorry I was. Through all this we still had to remember that we had another little boy who needed just as much love and attention. He had the instinct to be calm while Andy was being tended to and when that was done he would act up and we would care for his needs. There were many times when Alex would be calmly playing while we are tending to Andy and if we poked Andy with a needle Alex would cry out too.
Twins are amazing and wonderful. Andy is about to turn 6 as I write this. Life is easier and harder at the same time. He can tell us what hurts. He can tell us about his boo-boos and has taken on the responsibility to pop them on his own at times. He is more vocal about his disease. He will scream about how much he hates this disease. He will cry and wonder why he can’t have skin like the rest of us. It seems is cries from pain are even louder now. I hear he and his brother planning quietly in their room about what fun things they will do when Andy gets a cure for his skin. I watch his brother run along with friends ahead of Andy and I comfort him when he cries because they left him behind. I see hear about his day in kindergarten. How excited he is everyday about what they do. Teachers tell me how hard he tries to not be different and how he fights being catered to. We find it amazing that gym is his favorite class. He is a survivor.
When you have a child with special needs you learn many things. Life is not to be taken for granted. Your life can change in an instant. We always thought we would have “perfect” kids. We took it for granted that we would. Why would anything go wrong, that happens to other people. You learn to appreciate many things. We appreciate the moments when Andy seems free and is running and jumping around. Most parents tell their kids to “stop jumping on the bed”, we join him. A smile, a kiss, and a warm hug mean so much more. When our boys want to play, this is what we try to do. The dishes, laundry and dirty floors can wait, our boys cannot. We appreciate many things that thankfully most parents do not. We enjoy days when Andy wakes up and isn’t stuck to his clothes or his bedding. A day without Andy crying in pain. Days without blood on his clothing and ours. We actually have become experts on getting blood and bacitracin stains out of clothing. When a bath is less than three hours long and his knees are the only thing we have to wrap are as close as we come to being “normal”. You just never know when life can turn. Today is a gift, that is why they call it “the present.” Many times I think he is stronger than his mom. Just when I think that I cannot handle one more cry, one more bandage, one more set of clothing filled with blood Andy offers me relief. After a painful episode he reaches for me, grabs my neck, looks at me like he is peering into my soul and without a word just hugs me as tight as can be as if silently saying, “It’s all right mom.”
True heroes are not in comic books or on the movie screen, but are actually real people right in front of you. He is our little “Hercules”. He is only 5 and he has been our teacher. He has an unrelenting spirit. He doesn’t let his limitations rule his life, he just tries his best everyday.
Andy became an angel on March 25, 2003.