Spring Fever

At about this time every year, when the temperatures start inching into the 70's, people start itching for warm weather. They pull out their shorts and flip-flops and go for long walks in the neighborhood. They plant flowers in the garden and take off the grill cover. It's spring fever.

For me, unfortunately, spring is just a reminder that hot weather is on its way. As many of you know, I have a genetic skin condition called Epidermolysis Bullosa Simplex which causes blisters after the mildest form of friction or trauma heat. My mother has it, my brother does and so do both Will and Jack. Essentially, there is a defect in the molecules between the two outer layers of skin - the dermis and the epidermis - allowing blisters to form in these pockets. These blisters have to be cut or they will continue to grow and they can remain painful to walk on for days. Things like riding a bike, taking a walk around the block, or participating in any kind of athletic activity leads to blistering, especially in warmer weather. When it's warm outside, there's very little that we can do without making our feet sore or blistered.

I remember my mother becoming so upset when we had blisters as children because she felt responsible for our pain. To me, that was just silly. I think I'm a pretty swell person most of the time and I never felt like I was deficient in any way. In fact, it wasn't until I graduated from college that I finally broke down and agreed to get a handicap tag for my car. I struggled with the designation but practicality finally won out. When it's 90 degrees outside, walking miles through an airport parking lot is not an option.

Without a doubt, there were times growing up that it was hard. Still is. The pain can be overwhelming sometimes. Beyond that, it's always hard to be different than everyone else. I never played on any athletic teams. I couldn't go to places like Busch Gardens. I certainly couldn't wear trendy shoes or high heels. Riding a bicycle in the summer could easily result in blisters on my fingers. Walking around a college campus on a daily basis could be a problem. There were times that my feet were so sore that I literally couldn't put on a pair of shoes. Things that most people take for granted can be very difficult for us.

It's also difficult to have a hidden disability. People look at you and see a healthy young person. It's hard to imagine that there could be something wrong. Because of that, I have had to deal with a fair amount of disbelief - from my 4th grade gym teacher who thought I was fabricating this to get out of PE to a very aggressive bike rider who screamed at me for "stealing" the handicap tag I used because I clearly didn't deserve it.

But it's not all bad. I had to learn to be independent at a very early age. Because I couldn't do what all the other girls were doing, I had to develop a pretty strong self-confidence. I learned that I had to make decisions that were in my best interest instead of just following the crowd. Fortunately, I've had the most wonderful friends who have lived with this almost as long as I have and are incredibly understanding.

When Jack got his first blister (from the elastic on his diaper) I cried and cried and cried. When I was pregnant with Will, I obviously wished that this would not pass along to him also. But there was a part of me that worried that if the Deuce was blister free that there would be tension and animosity between the two siblings. Will got his first blister on his toe, probably from scooting around on the activity mat. And while my heart breaks every time I cut his blisters too, I know that at the very least, the boys will always have each other to talk to, to cry with, to lean on.

I now understand why my mother used to cry when she cut our blisters. To see your child in pain and to know that it is attributable to you is the worst feeling you can have as a parent. I cry not only for the immediate physical pain but also for the difficulties they will have - for the times they will be left out or made fun of, for the things they wish they could do but can't. But I also know that they will be stronger, more independent, more empathetic human beings for it. And in the grand scheme of things, it is something that slows us down, but it's not life threatening. I'll take that.

So until the weather turns chilly, if you come looking for us, we'll be sitting inside in the air conditioning.