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1 Jul 2007
After all, we're family.
Several months ago, I took my boys with PC - Sam and Nate - to our dermatologist for some problems about their PC. Spencer, who is 7 years old and who doesn't have PC, came along. Sam and Nate got a lot of attention from the doctor as she thoroughly examined their skin. She is caring and loving and Spencer watched this examination for some time.
Then Spencer came up to me and whispered, "Can the doctor look at my skin too?" I just smiled. Fortunately for us, this nice doctor caught on quickly and kindly looked at Spencer's skin. Spencer does have eczema that we work to keep under control and so the doctor was able to take a real look.
That experience was a reminder to me that our children without PC need attention too. Typically, we tend to focus on the infected nails, the blisters that need popping or bandaging, the trimming. We try not to make a big deal of it all at home, but obviously, we have to care for the PC and it is a part of our lives. The important thing is for me to remember that Spencer needs to feel a part of things too - especially in a family such as ours where he is the only one without PC.
There are times when I may be talking with Sam and Nate about PC and how hard it may be at the time, perhaps because of weather or something, and Spencer will pipe up with how his toe hurts or how his eczema hurts. The others will say, “Oh yours doesn't hurt like ours does.” But I know as a parent, Spencer's feelings are just as important. The others get attention because of PC that he doesn't get.
In some ways, it's kind of funny - when Spencer was younger, Sam and Nate would ask why he didn't have PC. They wished their nails were more like Spencer's and dad's nails. They wished they had feet like Spencer's too. PC Project has really changed how Sam and Nate feel about their PC. Sometimes now it seems like Spencer is the odd one out.
PC is a big part of our lives, particularly because our family is so involved with PC project. The kids see me working on my laptop at home, often answering patient emails. They hear me talking with the director, Mary (grandma) often on the phone. They know I go into the PC Project offices. They've seen projects, especially for the patient meetings, laid out on the living room floor. They've participated in many of those patient meetings. All of my children have been involved at some point or another. We talk about current research and other PC Project topics at our dinner table. We might be a more extreme family when it comes to PC topics simply because of who we are and Spencer is part of it all.
At the same time, nothing will change the fact that Sam and Nate really would like to be like Spencer and not have PC. I have to be careful because when Sam and Nate are really hurting, it's easy for me to ask Spencer to do the running. I have to be sure that chores are spread out evenly. For example, if I know it's a bad feet day, I try to subtly give Spencer chores that may involve more of the walking - like taking the garbage out, for instance. But it still has to be fair. He's never complained, but I don't ever want him to resent Sam and Nate because he has to do more, or because he has it harder and they get off easy because of their pain.
The reality is they do have more pain than Spencer. I just have to be sure and treat them all my children fairly. Some days, one may get more attention than the other because of different needs and circumstances, but as long as it given consistently to all, over all, that's okay. They shouldn't have more or less love and attention because of their sore feet, lack of sore feet, or for any other reason. They all get it because they are my children - no other reason.
At the same time, Spencer is learning compassion for his siblings. He's becoming more sensitive to hurting feet. I've heard him often jump up and say, "Here, I'll get that for you!" He may be the youngest in the family, but he knows he can still serve his older brothers. Recently, Nate and Spencer were playing with each by the river at the family cabin. They had wandered along the river quite a distance away. I was watching out a window and I wondered about Nate, whom I knew had pretty sore feet that day. But then I saw Spencer, who is much smaller than Nate, piggybacking Nate back to the cabin. I can't imagine, knowing Nate, that he asked Spencer to carry him. Knowing Spencer, I'm sure he volunteered. I can't tell you what that did inside my heart to see little Spencer carrying Nate. The most important thing, regardless of PC, is that we have each other and we love each other. After all, we're family.