Thursday night I had to take the gauze off that was wrapped around Nicholas’ foot. He was upset and totally scared to have it all taken off. He cried “I hate my fixator. I wish my leg wasn’t original. Why cant I be like other kids who don’t have to have a fixator and don’t have to go through hard stuff”. Hearing it was heart breaking. I responded “I know this is hard and I wish you didn’t have to go through it too, but remember all the kids we saw at the hospital and the pictures I showed you of other kids in fixators. You’re not the only kids who has an original leg and hard stuff to go through and I know having a fixator is a lot of work but look at your long leg. Even though it is hard your fixator has done a good job and you have done a great job.” I cant really say he calmed down at this point. Steven and I did the best we could. I even gave him candy to eat while I was washing his leg but nothing really helped. When the gauze started falling off, thanks to the shower sprayer, he realized that it didn’t hurt he and he saw his foot free of pins and Nicholas was excited! Still anxious but excited.
It is the hardest thing in the world for me to do something Nicholas does not want me to do or to do something that hurts him or scares him. I have had to do a lot of that throughout this experience and I would not wish it on any parent. Having leg lengthening is hard for Nicholas in many ways far beyond anything I go through as a mom. But this is the hardest it gets for me, having my boy screaming and crying “STOP MOMMY STOP”
When everything was finished Nicholas said “Mom I don’t hate my fixator anymore, I was just scared of it hurting but now I have scabs instead of boo-boos” (scabs are a very good thing compared to wires and boo-boos). I didn’t want him to think that he was not allowed to be upset so I explained that it was ok to hate his fixator. He could be mad and sad and did not have to be brave all the time and that we loved him just as he is even though I wish he did not have to go through this I would not want to change him one bit. Then he said “I love myself the way I am too.”
I thought having the bandages off and a few days pass would get Nicholas moving. Now it is Sunday night and he still has not walked. He is really scared to and he said it feels strange. We are trying to motivate him without pressuring him but it is not easy. After the fixator was put on in March, trying to walk was part of his physical therapy. We had to make him do it. The first day or two was difficult but at least he was some what willing to do it. Now he is either in his wheelchair, uses the walker or hops. I have to ask Dr. Standard what we should be doing. The hopping is really dangerous and he fell once doing it so now he scoots. Christopher has even started copying Nicholas’ scooting he does it so much.
I thought getting a big part of the fixator off would make things easier for Nicholas but he was walking like crazy before Wednesday and it is so hard to see him sitting around now. I realize he will walk eventually but knowing that does not make this any easier. I will call Baltimore tomorrow to see what Dr. Standard thinks and we will make an appointment with Ms. Kathy his physical therapist. I hope Ms. Kathy can motivate him some. Honestly I think she will be shocked to see him in the wheelchair again.
We had a nice outing to church today because they are wheelchair accessible, walker friendly and so very encouraging. They have followed us through this journey with prayers, thoughts, and kindness. They even picked Save-A-Limb as the charity of the month (to learn more about Save-A-Limb see the links to the left). I made a small poster and gave a short talk to explain what Save-A-Limb was. It was very emotional for me to stand up there and talk about my boy. The funny thing was, after I finished and coffee hour began, people started coming over and thanking me. They thanked me for sharing and telling them about it.. I thought it was the least I could do if they were willing to contribute to this charity that means so much to us.
I explained that Nicholas could not tell them about it himself because he thinks it is just a day to celebrate kids in fixators and such. He does not realize that there was an alternative to lengthening. I did tell him that the money we raise is to help kids get lengthening who could not afford it. He told me that if we win $5,00 on a Food Network Challenge (he thinks this is likely to happen don’t ask me why), he would like to keep one dollar to buy a wii game for Charlotte and a hot dog dinner for our family. Then give the rest to people who need it more than us. That made me wonder if maybe he could have explained it well enough himself after all.
Kitty, one of the loveliest members of our congregation, let Nicholas and Charlotte help out during kitchen clean up. Nicholas was in his wheel chair and she let him hold things and wheel them over to the refrigerator for her. I know this made the process take at least four times longer but you could tell that she did not mind one bit. That kind of kindness and attention is so wonderful! Kitty had Nicholas hopping around a few weeks ago at the church yard sale and it was so fun to watch him having fun! Today Steven was in a meeting after the service and keeping track of the three kids was not easy. Did I mention that they had munchkin donuts for breakfast? This is so not normal for us that Nicholas asked “but mom wheres the healthy stuff?” We are renovating our kitchen so our meals have not been so great lately. Still I am sure you can imagine the kind of energy they had after the munchkin breakfast.
So this is where we are right now. Thankful that the surgery went well. Still a little frustrated. The light at the end of the tunnel is that Nicholas only has 4-5 weeks left in the fixator. That’s it.