Mary Jo

Name: Mary Jo Burgy

Location: Madison, Wisconsin, USA

Family members with EB: Andy, 6 years old, RDEB

Biography... in her own words:

My name is Mary Jo Burgy. I live in Madison, WI with my husband Brent and my twin boys, Andy & Alex.

I was raised in Oconomowoc, WI. I am the youngest of three children. My oldest brother lives in the state of Washington next to my parents and my other brother lives in Franklin, WI about one ½ hrs. away from me.

I went to college at the University of Wisconsin-LaCrosse. I received my degree in Sociology. I have been the Director of Social Services at a nursing home since my graduation in 1991. My job is quite challenging due to the different needs of the elderly and how it affects other family members. I am glad that I do work in this field so I can be helpful to my parents if they need assistance. You certainly see that the Golden Years really aren’t that golden for many people. This makes you realize to not put off tomorrow what you can do today. By the time you get old enough to have the time to do things, you just may not be well enough.

My husband and I met in the hallway in 7^th grade. We were together on and off during our high school years. College separated us, but his sister went to the same college I went to and he came to see her, we ran into each other and the rest is history. We were married in January 1992. In 1993 we decided to try to have a baby. Not long after we decided, I was pregnant. By the third month I was just huge. As Brent would put it, "It’s like one day you weren’t pregnant and the next, whoa, you were pregnant." His gentle way of saying my stomach grew over night. His father was big on teasing me about having twins. There are twins on Brent’s side of the family so he thought it was funny to tease me. Well, during my third month it was time for the ultrasound. They turned the screen on and right away there were two heads! I could not believe it. I couldn’t stop smiling or shaking. What on earth was I going to do with two? Later we would learn that it was two boys. This made me happy. I would love to have a girl, but I really wanted to have a boy(s). So, immediately you start to plan for two. All the sports they would be in, the dirt, the animals they would bring home, etc. What was about to be the reality, no one could prepare me for.

You all know the story of Andy (if not, go to January article of the month). We talk continuously about things that happen to our EB kids. What we have to do to them, what we need to allow others to do for them, what they can and cannot do, etc. Once you have kids that is your focus. Rarely is it discussed what this has done to YOU. How has this changed me? I guess being mom of the month, I get to do this.

I became a social worker because I am a "fixer." I fix everybody else’s problems. I am the strong one. I pick up the pieces. I make sure everyone is where they are supposed to be and take care of the details. I need to have all my ducks in a row. Suddenly the fixer needs to be fixed. This was a role I was not accustomed to. So I carried on. I wanted to be strong for my parents, in-laws, my husband and friends. I told them that all would be okay. It isn’t a big deal. It’s not that bad. Things were fine. But none of that was true. I was dying inside. I had lost control. I had lost my firm grip on life, but no one knew that but me. This was a mistake. Once you take on the role of being the strong one it is hard to break from that. The people around you don’t know what to do and don’t know how to help. Not only did my child have this awful thing that I gave him, but I felt so alone and helpless.

I would cry over my loss of a "perfect" child, but I would do it alone. I would silently pray that he would die and be relieved of this misery he was living in. How could I admit to anyone that I wanted my child to die? That just doesn’t sound like a caring mother. Everyone thought I knew what to do, I knew what was going on, but I was just as lost everyone else. It was easier to hide my feelings than to explain them to others and explain why I had lost control. My reality now was my doctor telling me that Andy was a sick little boy and to take him home and enjoy him as much as possible because we would not have him long. I also would need a marriage counselor because my marriage would not be strong enough to take this on. This makes the future very bleak. But, I also had a healthy little boy at home who also needed love and attention. How would I be able to do this for him?

Things were not easy. Much of our family lived out of state so we were alone the first year or two. My husband was going to school full-time and working and I was working full-time. Our lives were busy to say the least. I honestly did not think that I would make it through this. There were times when getting out of bed was not going to be a possibility, but the cries and needs of two little boys got me up and going. If Andy could go through what he goes through daily, I could make it too.

Here we are six years later. The boys are flourishing in kindergarten. They have many friends together and apart. They intrigue me every day with how much they know. Andy and Alex are true friends. Having twins was truly a blessing in disguise. These days I am still a fixer, I always will be, but I also know that it is also okay to be fixed. It is okay for me to say, "I just cannot do this any more." "I cannot stand to hear him cry or to see him in pain. A pain that I cannot fix." I know that each day I do the best I can for Andy. I also know that if I don’t pay attention to myself I won’t be any use to Andy. So for those of you who care for EB kids, remember it is just as important to care for yourself.