This week has been a challenge. Madison is starting to learn balance and walk without her crutches. This is the first time watching her walk since her surgeries back in May and we’ve been a little concerned. Her waddle is that of an old lady or something that is not of this world. At first it’s a bit comical but as I was trying to help her figure out how to walk “normal”, we realized that her right hip is considerably higher than the other. Of course this involved an email into her surgeon to find out if this is normal.
We had to wait until Monday to find the answer and all of the information was rather interesting, to say the least. And the following information is for femoral twists only. I’ve heard the TYPE of surgeries she had are for MANY different problems/complications but what I’m going to go into now is related only to the femoral twists that these kiddos are born with.
So because her thigh bones were twisted, her hip flexors rotated her legs when she walked. This is how she learned how to walk, run, jump and play; her body not knowing that this wasn’t normal. Now that she’s had her legs corrected, her hip flexors are having to re-learn how to move and engage which is causing her waddle. She literally doesn’t know how to walk, ie. swing her hips, which is how we all normally walk.
This completely changes the dynamics of her entire body. If affects her lower legs, obviously her thighs and hips, her lower back, her shoulders. Yep, her entire body. Most of the time she’s pretty light-hearted about all of this and she’s a pretty amazing kid but we still have our breakdown moments when she’s tired, or hurting, or even tired of not being able to walk the way she used to. What’s also very interesting is that the breaks in her thighs are just now starting to cause her pain and discomfort. I had thought we were done with the wheelchair but we will be taking it with us on our out-of-town trip that’s coming up.
My biggest advice at this time is patience and listen to your kiddo. Their fears, frustrations, worry and pain are with them 24/7 which is so easy to forget when we climb into bed. We aren’t living with it so we don’t know it as intimately as our kiddos do. Sometimes I just pull her aside when no one else is around and I let her vent. She can swear, cry, yell, laugh, anything she wants to because this human of mine is dealing with a LOT. This world has a lot of sharp edges in it, I want to be the safe place for her to land every time.
I have quite a few videos of how she moves and walks if you would like to see over on my Facebook page. Unfortunately I can’t upload any videos here or I would. My Facebook page is https://www.facebook.com/raeanne.hadley. Have a great weekend and keep up the amazing love and strength!
Storyteller RaeAnne Hadley 