Raising Children With MHE

March 25, 2016


When I was growing up, there wasn't a whole lot of knowledge about the rare bone disorder I had. My parents tended to air on the side of caution; I'm pretty sure they would have wrapped me in bubble wrap and put me in one of those big bubbles to prevent any harm from befalling on me. In their eyes, I was already suffering enough.

I didn't want to ever tell my boys they couldn't do something they wanted to do before they even had a chance to try it, simply because I was afraid they'd get hurt. Obviously, I don't want them to get hurt...but I also don't want to be the voice telling them you can't. I want to be the voice telling them you can. While both of my boys did inherit MHE from me, there is really no telling how it will affect them in the future. I'd much rather them try something and not be able to continue doing it, than never try something out of fear – out of my fear.

This is why I refuse to be a helicopter parent. I won't follow them around on the play structures in the park, I let them play the same way the other kids play; with the carefree abandon that only children seem to be able to embrace. My children experience bad pain days and will have to deal with future looming surgeries, so I want them to know how to play and how to be free now.

I enrolled them in a martial arts program recently. Ever since they started watching Lego Ninjago, they've wanted to learn martial arts. Yes, I do worry about how their classes will impact their bodies. It's not easy for people with chronic pain disorders to do strenuous activities that exhaust even the able bodied, but I figured...now is the time. They're little, and they want to try it, and I refuse to be that voice that tells them they can't. 

And they love it. They love it so much, their faces glow every time we talk about how much fun they had. They know that they get to go on Tuesdays and Thursdays and those are their favorite days of the week now. Even if it makes them a little sore, their love for it makes it worth it.

I will continue to encourage this, because I think it's wonderful for their mental health. Instead of feeling hindered by their disability as I often do, perhaps these are the steps we need to take in order for them to never allow their MHE to interfere with all the things they want to do in the future. 

It is my desire and my hope that I raise my boys to never let this be a road block in their lives. I want them to live the best, most fulfilled lives that they can. As real and as scary as my fears and worries are – I won’t pass those on to my boys. If I can help it, I won’t let their worlds be darkened by limitations.


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Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs.  Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at nicolewynn.net

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