Super Shoes

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I took yesterday off from writing about the 30 Jar (“Learn to Embrace Being a One-Car Family”, I will try to write about it when life calms down a smidge…) to take Robert in for a very important appointment. In the process I had to learn how to not blame myself for everything.

I had been waiting for months for a referral to come down the pipeline to take Robert to see an orthopedic specialist. I finally got tired of waiting and asked my doctor to write up a referral for us. Since my family doctor is A Boss, she did it in a heartbeat and within a week, we had a 7am appointment. (I was unaware people actually got up to conduct business that early. Like, a doctor is legitimately going to DO STUFF in their office that early in the morning? Mind blowing.)

The office was outstanding.  It was designed with children in mind and was full of colorful therapy devices, bright murals, and even a jungle gym. Robert was salivating when he saw that thing and it absolutely killed him that he couldn’t immediately  go over there and act like a monkey.

Robert did, however, cooperate and walked for the doctor, let her measure his legs, and even answered questions without getting too shy.

“How long have you known about the difference in leg length?” she asked me.

Here it comes. The guilt crept in to the pit of my stomach. We’ve known for quite a while. Why did I just sit back and wait? Why didn’t I advocate for him more? Why didn’t the specialists listen to me when we were in Ann Arbor? Why did I just accept their blaze attitudes about my son?

“At least six months,” I replied with shame.

The doctor looked shocked and I felt even worse. I tried to explain our situation, but it just sounded lame so, I just sat there while she explained to me how his leg was affecting his other foot, his hips, his back. The difference in length was more than we originally thought. He was going to need some specially-made orthotics for his shoes for now. Down the road? Perhaps surgery.

My guilt was out of control by this point. I felt like I personally stretched one leg longer than the other by the time we were done. The doctor wasn’t trying to make me feel bad, but boy, I did. When she was talking about his spine being out of alignment, I almost lost it.

The Beckwith-Wiedemann Syndrome in our family comes from me. I started this. This is all. my. fault. I had a one-way ticket to ride the Guilt Train. All aboard.

After the appointment, I was feeling pretty sorry for myself. But, Robert snapped me out of it when I heard him telling Grandma about the shoes he was getting.

“I’m getting super shoes!  I will be able to run faster and have super powers and my feet won’t hurt!” he glowed.

He wasn’t sad or scared. He was thrilled that he was going to have corrective orthotics so he could do things the other kids took for granted. (He has a hard time balancing and isn’t very athletic right now, mostly because of his long leg getting in his way.)

“It will make me all better!”

He was right, of course. None of his current “damage” is permanent. His spine is out of whack, but it will re-align after he starts wearing his new shoes. His feet will correct, too. And if the orthotic doesn’t encourage growth in the short leg (I honestly had no idea that could be a thing, but it is, apparently…) we have a plan to deal with that, too.

He didn’t blame me for his lot in life. And I realized something about my guilt. You can beat yourself up about things all day and dwell on you mis-steps of the past, but that doesn’t change a thing. Robert wasn’t upset or sad because he was looking forward. He was pumped to go home and pick out his new super shoes. (He’s thinking either black with red spaceships or blue with guitars…hot stuff!) And he was dying to tell people about the new super powers he was going to get in 4-6 weeks, depending on how fast the custom insert is crafted in Washington.

So, I won’t blame me, either. Yes, we have Beckwith-Wiedemann Syndrome. Yes, it comes with its own set of unique problems. Would I want to change or erase my boys to “spare them” this disorder?  Not for a second. They are happy, fun-loving, smart, sassy, strong, and loved. They are very loved.

My only guilt here is that I just wrote a big, sappy, lovey-wuvvy piece about my sons.

Still not that ashamed. 🙂

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7 thoughts on “Super Shoes

  1. I know a little how you feel in regards to knowing there is an issue and waiting.. and we’ve been there with the leg length issue.. and other medical stuff… We have been there in Ann Arbor and I have also been at the doc’s at 7 am.. — special time for us mom’s apparently.. Although our children’s issues are different, I have been there and it is amazing how much these kids take the guilt from us.. They are resilient and most times we don’t need to “add money” to their “therapy Jar.”

    1. I felt really bad that I didn’t “get” the severity of the situation. I mean, I know that leg alignment can affect more than the legs, but it didn’t click that he could have lasting injuries to his back. That was a real killer for me! I am more than a little upset that the U of M doctors didn’t address this when we were there. I mean, we all knew about it and that was one of the biggest reasons we went there….Oh well. It’s the past. Going forward I just have to remember that I AM the advocate. If they think I am the pushy mom, so be it!

  2. Nothing to be ashamed of, and go you for getting on it as soon as you realized it was a problem. the fact that Robert has you for a mom and a great outlook probably means he’ll be able to overcome any lingering issues after the shoes do their thing.
    Rock on!

  3. This was a very touching post. I can understand, I have been on it but not nearly aggressive enough with my daughter being bullied in school (it’s only junior kindergarten!) but now at the end of the year she is having chronic stomachaches. There is guilt but also, wth, the teachers said they’d take care of it. You trust the professionals to do their jobs and take care of the issues. .as parents we already have so much on our plates. Anyway, I get it.

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