School News

We have decided not to send Nicholas back to school till the distraction aka lengthening phase of this surgery is done. He’s about 1/2 way there! It’s just too complicated and he just does not feel ready. He is having random spasms. He’s not comfortable sitting for long periods. He is making some great progress with his knee bending and we need to keep working on that. He’s lengthening 4x per day which would be hard to work into the school day. That’s about it. I think it’s reason enough.

The Fibular Hemimelia and Limb Lengthening Awareness Group members helped me think this through. One mom pointed out that it still the same process even though it is not an external fixator. It really is a big deal to grow 2 inches in six weeks. I also feel like he really needs to have a say in this. Pushing him at this point would not benefit him enough for me to feel it would be worth it.

So that’s that. I will be working on getting Nick out more. He is doing much better with stairs on his crutches thanks to some weekend practice. He’s still feeling really happy about his middle school acceptance. I just want to makes sure he’s doing what he needs to, to feel ready come August! At home instruction should be calling me today.

Surgery Soon

Nothing about surgery is easy. It’s all doable from my perspective but not at all easy and I am not even the one having surgery! My goal is always to make it as easy for Nicholas as I possibly can. Today I am emailing back and forth with the school nurse. She’s a fan of Nick’s no doubt and a kind lady. It’s nice to get an idea of some of the logistics of Nick going to school during lengthening. For his last lengthening he did not go back and looking back, I don’t think that was best for him.

I think a routine and socialization can really bolster kids emotionally. Or at least I feel this is the case with my kids. Nicholas is like me and inclined to want to hibernate. A little pushing goes a long way. School offers the opportunity for others to help Nick, for him to feel supported by his community and of course learning. All good stuff really.

Sending him in will be scary. Trusting that he will be safe and careful with his leg will be hard. More letting go my friends… that ultimate motherhood lesson. It never gets old.

That’s all pretty far away feeling right now. Right now we need to get to surgery (March 24th femur lengthening in case you missed my last post). I want to prepare now but I am not sure what to do. Decluttering is on my list. Less stuff around will make it easier when Nick is in the wheelchair or walker. I am not sure a wheelchair will work very well in this house. That was one benefit of our our old house for sure!!! He could maneuver around the entire first floor in a wheelchair. The logistics of this house will be totally different.

Logistics can be really stressful during surgeries. Simple things like getting from point a to point b can be a problem. It’s all solvable though. It all works out.

Speaking of problems… I love the quote below. Fibular Hemimelia and surgery in general could certainly be viewed as problems but they have surely helped me realize what I am made of and what I am responsible for giving back. I know fibula hemimemila has helped me see what Nick’s made of. It will be up to him to figure out what is his to give back to life.

Your leg is cool


Yesterday was the last day of school. It was an emotional day. Christopher “graduated” kindergarten. Charlotte almost refused to leave early because she did not want to miss time celebrating with her class. And Nicholas, well he was happy to leave early, and maybe the most excited about summer, still I believe he had a great day and more importantly a great year.

I had to take the kids out early regardless of it being the last day because Charlotte had to have her teeth cleaned. While waiting for her I sorted through the kids folders and envelops. The office has just enough curious toys in the waiting area to keep the kids occupied. The amount of paper that has come home in this last week is crazy. In Nick’s folder was an envelop that contained small notes written by his classmates and homeroom teachers. They were really heartwarming notes. They were so kind that I had a hard time not crying. Being at the dentist office helped. I asked Nick to hold one up so I could share it with you all. Hence the pic above.

Two notes in total mentioned his leg. The other one said:

“I like how you try to do stuff with a hurt leg and you were friendly and brave”.

I love these notes. The others centered around Nick being kind, helpful, smart, funny, respecting others and being a good friend. I love the leg notes but I also love that it’s not all about the leg.

Recently there have been some posts on Facebook regarding parents being scared of their children being teased. I had those fears to a great extent when Nick was little and still have them to a much lesser degree. These fears made me think about how I worried so much about treating Nicholas so “normally” that other people would to. I felt like I was setting the tone for others in my behavior and attitude.

I am or may not have been right about that but I now believe that I was in fact setting the tone for how Nick would see himself, which does dictate how others see him today. The way he expresses himself regarding fibular hemimelia, the way he lives his life without limits, the fact that he believes fibular hemimelia makes him more!!!

“The way we talk to our children becomes their inner voice”. Peggy O’Mara

As parents many of us worry a lot about the negative influence society will have on our children. Wether it be teasing, bullying, the media, friends, etc. I know I am still early in the game in many ways, I have yet to parent a teenager!!! However I do feel that my experience with Nick does shine a light on the fact that our influence can be greater than all of that. The solid foundation I have tired to build for Nick has held so far. I expect that if he was teased he would be hurt, but I do not believe it would crush him, so the worry about it does not crush me.

Plus, worrying about these things really doesn’t make it easier if it does happen. Here is what I think helps; build a solid foundation of love and acceptance, celebrate who your child is, acknowledge the hard parts of the journey but help your child focus on the light at the end of the tunnel and don’t automatically react negatively to people staring or questioning. If you react negatively eventually your child will too. That kind of reaction can create shame. Staring, in and of itself, can be totally benign. It’s usually curiosity or concern. People generally don’t mean any harm. I know I stare sometimes at people with differences. I try to smile at them when I realize I was staring. I know I have said the wrong things!! I also know in my heart I never meant to be hurtful. Intention is important to acknowledge. Smiling and answering people in an non defensive way puts everyone, and most importantly your child, at ease.

I know I have written about most of this before but these little notes from Nick’s class and watching how he operates in the world got me thinking. Nick’s classmate would never have thought Nick’s leg was cool if Nick didn’t, and what Nick thinks is what matters. I do feel like I need to be more mindful of this with all my children and not just about the big things but the little things too. The world will not always be kind. I hope they will know that they do not have to take in the unkindness, that it is never who they are that is the problem. I hope that the kindness that resides in their hearts sustains them through whatever life throws at them.

“It’s not our job to toughen our children up to face a cruel and heartless world. It’s our job to raise children who will make the world a little less cruel and heartless.” L.R. Knost

That’s the kind of people I am aiming to raise. I am certain that other parents are doing the same. Nick’s notes are proof of that.

This post is dedicated to Mrs. Goodnow. I am so grateful that you were Nick’s teacher this year. Thank you!!!!