Pain in the Ass

Nicholas and I are back in Washington. We arrived last night and according to him had a bit of a harrowing drive from the airport to our dear friends home in the rain. I guess he’s not too wrong. Driving in the dark, in less than familiar surroundings, is a little hard for me. Add rain and… harrowing? Maybe so.

The rest of our journey was easy peasy. Lots of time for chatting and reflection. While going through security at JFK to pass the time I asked Nick if he had his ExoSym already and he could go anywhere where would he want to go and he said “home” and I asked “why” and he said “to take a nap”. So we have established that he was tired.

So I amended my question and said the nap would come first at any destination and he still said “home”. And now I was frustrated.

Me: “You’ve got to be kidding me”

Nick: “I want to go home, nap and go for a walk in the Arden Woods.”

Ahhh… this make sense to me. Something he can’t really do now or at least not do comfortably. This I get and this touched my heart. I want to do the same exact thing when we get home.

Today he started using his ExoSym and it was a pain in the ass… Yes a pain in the ass and that seemed like good news to me right away. Nick was using some muscles much more than he had before. The brace and the process are both simpler and more complex than I thought. I don’t have the brain power left to share all we learned today but I will. I promise. For now just know that while it was a pain in the ass it was not a pain anywhere else and Nick is doing remarkably well with his functional training which will go on for quite some time. He wont experience the full effect of the device for possibly 6 months. There will be a lot of work involved. I call it Miracle Work and I will elaborate next time.

For now: Happy Halloween!

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Our Best Days

Nicholas did not trick or treat last night. Nicholas did not dress up. But Nicholas did walk our dog and that made me pretty happy. I was happy that he could. Walking sans crutches is still feeling fabulous and looking fabulous (to me, Nick is having some leg pain which we assume is from not bearing weight for about 5 weeks).

Trick or treating was rough last year. He was waiting for a new shoe insert and brace (I think that was why he was in pain). Fall seems to be a rough season for his foot (which some theories are brewing on for another post). This year he just didn’t want to. At first I was upset and tried hard to encourage him but then I quit because I realized he really just didn’t want to do it.

Holidays I also realized can be little pressure cookers of stress! We want them to fun and fabulous. How many trick or treating Halloween’s are there in ones life time? Oh the pressure!!!!

This morning I realized, while reading a post on the fibular hemimelia support group that the holidays are not my favorite days. Sometimes I feel like they should be but if I am being honest, they really are not. Another mom was writing about her son having a hard time and not being able to trick or treat. I knew that feeling. I knew the emotions she was having so well and commented:

Nicks had some rough trick or treating years. He didn’t do it this year. He just refused but he’s 12. I could over analyze and wonder if his rough Halloweens have made him less into it but I think he just doesn’t care about it that much. I feel like holidays are a little like summer where I try hard at times to have as much fun as everyone else and make the most of it but my favorite days and our best days as a family are not the holidays anyway! All the pressure for it to be great and memorable isn’t really conductive to joy. For me…

I continued a bit more but I don’t want to share personal information about someone else and their child here. I hoped what I wrote helped this mother see that she is not alone. That these feelings are normal and that our kids really don’t seem to focus on the hard times. Nick does not talk about his hard time trick or treating last year or any other year.

To be honest I was kind of grouchy yesterday. I think I was upset about Nick not wanting to trick or treat, maybe it’s the bittersweet nature of him growing up. I also felt pressure to make it fun, be happy, it’s a holiday… etc. Well then the dog didn’t want to wear her costume, I didn’t know where the kids trick or treat bags were, getting everyone dressed stressed me, we were running late, Steven was not with us, Bess fell within the first 5 minutes…. I could go on. I wish I could stop this kind of spiral when it’s happening but I just smiled and wished I was off somewhere drinking a glass of wine!

A few hugs from neighbors and seeing friends out and about helped but I just prefer regular days. Holiday’s stress me. It’s fine and I don’t think it’s a unique thing to feel this way. Acceptance usually brings some easing of the stress so maybe next year will be better for me. It’s interesting to me though that I can be grouchy and grateful at the same time. I am so grateful for kind neighbors and my children’s happiness.

It was a beautiful night regardless of whether it was the best for not.