Jan's Corner 2004
Merry Christmas! from Sam, Nate & Spencer
My Favorite Shoes
1 December 2004
The day I walked outside and found my shoes in the backyard, chewed up by my cute new puppy, I cried. Yes, that's right. I actually shed tears over a pair of shoes. My favorite shoes. The perfect shoes – a type of ankle boot to be precise. I paid $70.00 for them. I would have paid $300.00 for them. When I bought them, if I would have known how wonderful they would feel on my feet, I would have bought 10 pairs. When I went places, I planned my outfits around those shoes. If the clothing didn't look good with the shoes, I would find a different outfit to wear.
Most PCers (including me) seem to hurt more when it's hot. As a result, many Pcers I've met prefer sandals. But I've yet to find a pair of sandals that give my own feet the comfort and support those particular ankle boot type shoes do. So I wear them all year long, and if need be, I take them off while I'm sitting to air out my feet, so the pain doesn't get too intense. But for standing and walking (even with crutches), nothing beats those heavenly shoes. And heaven must have been smiling on me, because thankfully, I was able to take those chewed-up shoes to a shoe repair shop and they were fixed as good as new, giving me the same comfort and support as before my darling dog took them to her teeth.
Now those shoes are three years old and getting quite worn out. I've dreaded finding a replacement pair. How many pairs will I end up buying to add to my collection of shoes that felt good in the store, but hurt terribly after a few times of wearing them? Finding the right shoes is so tricky.
Thanksgiving day I hit the jackpot. While skimming through the after-Thanksgiving sales in the newspaper, I saw my favorite shoe/boots in an ad, labeled with a different brand name, but they looked just the same. The next day I went to the shop to see if they really were the same. The salesman must have thought I was crazy as I tried on shoes that looked exactly like the ones I had just taken off. And then crazier when I asked if he had another pair just like them in the same size. The shoes were 60% off that day and I happily bought both pairs. They are now waiting in their boxes on a high shelf in my closet, out of the reach of my dog, waiting for my current pair to fall apart. And if you see me 10 years from now and I'm still wearing the same kind of shoes you saw me in this year, don't worry about my lack of current fashion because frankly, I'll take my comfy shoes over style any day.
School Bus - Part Two - Resolving the Problem
1 November 2004
A while ago, I wrote about my 5 and 7 year old boys with PC getting spit on by a group of older boys while riding the school bus. Many of you commented on that incident and I promised to tell how we handled it.
A neighbor reported that her boys knew the names of all those bullies and were going to report them. She also said the bullies had threatened Sam and Nate, saying if my boys ever touched them (the bullies) with their nails, they would beat up Sam and Nate.
Note: It's interesting how little my boys will tell me about being picked on or bullied. I'm grateful I'm able to be home each day when they walk through the door. I often ask each of my kids the same two questions “What was the best part of your day?” and “What was the worst part of your day?” My advice to parents: Talk with your children because kids may be picked on and they just don't tell.
After talking with my neighbor, I was angry. No more did I think this was something my little boys had to put up with. If kids spit on a child with no arms or on a child because he had a different skin color would it be tolerated? And honestly, I was afraid for my boys. And mad. There was a momma bear in me I hadn't known existed up until that point.
Fortunately, I'm married to a calm, wonderful man who reminded me that we didn't want those kids to be our boys' enemies. After carefully talking it over, we decided to go to the bus stop where the spitters got on for a PC public relations campaign. That bus stop was far from our own stop so we didn't know these kids. But the next morning, Dave, Sam, Nate and Spencer and I all went to their bus stop with smiling faces and introduced ourselves to the children waiting there. We told them our names and then I explained very simply about MY nails, how they were just like theirs except the nails grow up, instead of flat, and how they weren't contagious. And of course, I then told them how Sam and Nate's nails were the same as mine and it was no big deal – just a bit different. A few parents were waiting with their young children and we told them what we were doing. We were happy for their support in our public relations campaign.
As it turned out, about 20 or more children got on the bus at that location. So Dave and I divided up as kids continued to arrive, giving our spiel over and over. Many children heard it several times. Some sweet children were even showing us oddities about their own nails.
But because there was that momma bear in me, I had to say quite sweetly how awful it was that some kids were making fun of Sam and Nate, even threatening them and spitting on them. “Can you believe it?” I asked in a shocked voice. I went on to say how bad I felt that their names had been turned in by some other kids and that they were probably going to be expelled from riding the bus.
Our PR campaign evoked three responses. First, some kids were penitent. One sorry boy even said, “I think I'm going to get kicked off the bus.” The second response we got was to be ignored by the main group of bullies (whom Sam and Nate discreetly pointed out to me). They clustered in a group and would not come near us. They knew who we were and would quickly glance over at us. Third, and most importantly, we enlisted the compassion and help of a whole new group of kids, including some very nice BIG boys, who now understood a little more about PC. Never again would our boys have a problem on that bus.
We kept it upbeat, positive and friendly. We felt very good about what happened at the bus stop. For that second group of boys, I'm not sure what they were thinking, but I wasn't sure trying to teach them empathy would be enough. And they did do something very wrong. When the bus came, we waved hello to the driver. She recognized us with Sam and Nate and said she'd received the names of the persecutors from some other children (our neighbors). She was aware of the problem but was a substitute driver and didn't know how to stop it, but now that she had names of the bullies, she was turning them in.
We put our kids on the bus there and sent them off to school. Dave went to work and I went home and called the school to report what we'd done. The school said the names had indeed been turned in by the bus driver, but the principal was out for meetings that day so they weren't sure what could be done. I replied that I didn't think the bus was safe yet for my boys to ride home on and said I'd be at the school 20 minutes before school let out to follow up.
I arrived at the appointed time, and the person who takes the principal's place when she's gone was there to meet me. She told me she'd called in the boys one by one and each was expelled from the bus until his parents had signed his slip. I humbly and gratefully thanked her for her help.
I waited until school got out. Sam and Nate were very excited to see me and wanted a ride home. But I said to them, “You HAVE to get on that bus and ride it home – this day more than any other day.” So I waved and said hello to all our new friends that we'd made that morning, many who continued to seek me out to talk with or say hello to for the rest of the school year.
I know I can't intervene for my kids on everything that goes badly in their lives. I can't and I won't. Believe me Sam and Nate both have dealt with bullies many times all on their own. But in this case it was time to step in. (Especially when 5 and 7 year olds are being ganged up by 10 and 11 year olds.) Hopefully we all learned something that day about solving problems and making new friends. So for all you who wanted it, that's the end of the story – and with a very happy ending!
The world has shrunk
25 September 2004
Did you know the world shrunk during the past three months? At least for me in did. In that time, I've met 27 with PC. That's an amazing number considering the fact that before this year, the total I'd met was zero. If you add the people with PC that I've chatted with by email or phone in the past months, the total goes even higher.
I don't quite know how to explain what it means to meet people for the first time who know exactly what it's like to have this strange disease. I've known people without PC for years who still don't quite understand what I've got. Some people think it's worse than it is, while others can't quite comprehend why my feet hurt. Thus, to meet someone who knows exactly what I'm going through, well, it's hard to explain. We don't even have to say a word. We just seem to have an instant bond.
Last Thursday, I met for the first time a young woman with PC. She's a lovely person, a student here in Salt Lake City, who found PC Project through the website. We met in front of her apartment. I can honestly say I loved her and connected with her from that first moment. We hugged and the bond was there. You don't just do that with other people. You don't go meet someone at a swimming pool and hug because you both like to swim. You don't go meet the person who's helping you with your child's classroom Halloween party and hug because you both love children. But it somehow happens with PCers.
Meeting someone else with PC brings that incredible bond because I know THEY know what its like – and no one else really does, no matter how well you explain it or describe it. But my fellow PCers – they know.
That's what was so amazing about meeting PCers in both Kansas City and Dundee. I still feel so connected to them and I genuinely care about them, even after a relatively short meeting time. And it's interesting, once we meet, it's not enough to just know they understand. Finally, it's a chance to show my feet and nails to others and to compare and see similarities and differences. And even though there are some differences between us, that's okay too, because at least they still know, better than anyone else in the world, what it's like.
The first night I was in Dundee for the patient meeting, I met everyone and had this incredible experience of sharing and talking, just like in Kansas City. Afterwards, I went back to the hotel room I shared with Mary (you know, my mother-in-law, the Mary we all know and love) and we were chatting, tired, but on a happy high. And suddenly, I just felt overwhelmed with emotion. Maybe it was just jet lag, but it felt incredible to be with people who understood – not pitied, mind you, just understood. I also felt just as emotional about the fact that scientists and doctors who have dedicated their careers to skin diseases were there to host and be part of the patient meetings. To have scientists and doctors who were genuinely interested in understanding, well, that doesn't happen every day in a PCer's world and the only way they'll ever really know how much that meant to me is to have a heart transplant – from me!
All I can say is thank you to the many people – PCers, scientists, and others – who have sacrificed so much and have made these connections possible. You have touched my life, have given me great hope in the goodness of mankind, and have made my world that much happier. What marvelous people you are!
Back to School
17 August 2004
Today I registered my three boys for the new school year which starts in just over a week. Already I'm wondering what this year will be like for Sam and Nate, my boys with PC. There are a few things I do every school year that I hope will help my kids. First, I explain to Sam's and Nate's teachers at the parent/teacher conference before the first day of class what PC is and how it affects them. This year I'm excited to hand them each a copy of PC Project's current brochure and website address. (Just send an email to request as many copies as you'd like.) PC is so tricky because sometimes my kids can participate in activities, but when their feet are infected or extra blistery, they cannot. Near the end of the last school year, Nate had a huge blister that flared up at school and his teacher saw his PC feet for the first time. When I came to the school, she met me in tears. This teacher was always understanding, but up until that time had never quite realized how much pain he was in. It's my opinion that educating others can go a long way in helping them feel comfortable about something they don't understand.
Second, I will make a plan with the teacher about whether or not to officially tell the other students about PC and how. I will wait to talk to both my boys and their teachers to see how we should handle this. For Sam and Nate, something so formal didn't seem to be necessary in Kindergarten and 1st Grade. But since 2nd grade, (Sam is starting 4 th ) Sam's peers have been much more aware of his nails and the fact that walking is sometimes hard for him. I've especially found it very important to communicate to other children that PC is NOT CONTAGIOUS. As much as I'd like to live inconspicuously, the reality is, other children are noticing and we have a choice to be offensive or defensive. We're finding the offensive can alleviate teasing, cruel words and even physical hurting (But not always.).
At the first of the last school year, after meeting with Sam's teacher, she and Sam decided it best to tell the class about PC and why sometimes it hurts and is hard to walk and sometimes it isn't. I offered to come and explain, but Sam didn't want me there – he wanted to do it by himself. This teacher gathered the class on a big rug and started the discussion by explaining to the class about her bad knee – how sometimes it hurt and sometimes it didn't and sometimes she needed a knee brace and sometimes she didn't. Then she turned it to Sam and together they explained PC and how Sam's feet were like her knee. Because of our previous discussion, she was very knowledgeable and was able to help Sam articulate. Sam loved how the discussion went and the school year was the smoothest he's had thus far in regards to teasing.
Nate just finished 1 st grade and up until towards the end of the school year, other students weren't bothered by his nails and feet. Then at a dance festival, where all the kids took off their shoes and socks, other children saw his sores and suddenly some friends he had all year didn't want to play with him anymore. From then on, until summer vacation, Nate refused to wear sandals. Needless to say, this year, we may be much more pro-active in formally educating his peers.
Another thing I do is volunteer in their classrooms. This serves many purposes. It's fun to be involved and it keeps me in touch with the teachers. It helps me keep things in perspective too - PC isn't the worst thing that could be going on in a child's life. But the biggest advantage to volunteering at school is I meet the kids in the class. They see me with crutches and always know whose mom I am. They say, “Hi!” and smile at me because kids are basically good and bask in any attention even a boring adult like me will give them. And when I'm helping them read or whatever, they see my nails and ask me about them because I'm friendly and it's okay. I explain to them easily and say “just like Sam's” or “the same as Nate's” and all of a sudden, thick nails aren't so bad. It's a good little PR campaign to help my boys out as they learn to be strong enough socially to answer the questions or handle rude comments themselves. My boys listen to how I respond and hopefully they're learning.
We've also role played at home how to answer questions, especially obnoxious questions. I'm trying to teach them to act as if it's not a big deal, because when they act like it is, or act embarrassed, it only makes the situation worse. I did observe Nate answer a question using the exact answer we role-played. He even did the shoulder shrug when he replied at the end of his simple nail explanation, “No big deal.” And the child he was talking to shrugged as well because really it is no big deal if my nails look different than yours. But obviously, that doesn't work every time as Nate and Sam well know. But we just try to educate the kids and it can help a lot.
The last thing I do to help prepare my kids for a successful school year is something I would do anyways because it's who I am. I am very involved in my neighborhood, community and church. As a result, many parents and children know me and my family and hopefully think we're okay. Because we go with others to neighborhood barbeques, community plays, church functions, etc., they understand PC and how it affects our lives. Our kids play together and then they go to school together. And these great parents are teaching their kids about accepting other kids with differences, namely my kids.
Will Sam and Nate have a perfect school year? No, there will always be kids that pick on them, call them names or say other means things. They've already expressed some trepidation about certain children that target them. I know I can't protect my kids from all of life's problems, but like all parents, I will do my best to guide them as they learn the tough lessons of life. Most of all, my boys hopefully will always know that home is a safe place where they can get empathy - but not pity - and lots and lots of love.
As a parent, I've still got much to learn. If you have experiences you can share, or tips or ideas that you think could help us parents of PC children, please write me or post it on the Message Board so we all can learn.