This year has gone by in a blur. Starting with an eye surgery this past January, countless therapy sessions (162 just this year alone), meeting a life coach and now ending with another surgery in December. This is our life. Welcome.
Mattie had a surgery called SPML almost 2 years ago. Only 2 doctors in the US perform this type of surgery. SPML is where the doctor goes in and pokes tiny holes in the fascia of the muscles. This helps to expand the muscle so it’s not so tight without having to actually cut into the muscle itself. Mattie originally had it done on her hamstrings and behind her knees and ankles. This link will explain it in a little more depth.
After surgery, we kept having issues with Mattie’s knees. She would hold them straight and not want to bend them. We spoke with her surgeon and her orthopedic doctor numerous times and everyone agreed to “wait and see” hoping she would work it out. After seeing Mattie’s ABM therapist in NYC this summer & with a push from Mattie’s PT, we decided it was finally time to do something about it. A week later, I had another phone call with the surgeon. We decided to move forward with a second surgery. He is going to release the rectus muscle and put an alcohol block in that nerve with the hope that Mattie will not be so tight. Although I try not to have regrets, I wish we would have done this sooner. As much as it sucks to have to put her through another surgery, I have faith that we are making the right decision and hope that this surgery is one more step toward our ultimate goal of Mattie walking.
This morning I told Mattie that we were going to Texas in December to see her Doctor who was going to fix her legs. Mattie replied with “My legs are sick”. I smiled at her and said he would help her to walk one day. She replied with “I have a walker that helps me walk”***. Ahhh to be so innocent and so unaware. Why can’t we all be like that? I am afraid the innocence that we see in her will start to go away in the next few years. She will realize that she is different. She will realize that she can’t do some of the things other kids can do. We are trying to teach her that hard work and perseverance pay off, and are determined to make sure she is confident, strong and resilient.
As we make our way through this special needs journey, I hope that we can teach those that are scared of disability that it’s ok. Disability happens, even when you least expect it. It is a part of life. We have learned to embrace it. We will continue to hold our head up, smile, and appreciate what we have. We will continue to set an example for our children, family, friends and complete strangers that no matter what life throws at you, approach it with love and kindness because at the end of the day, isn’t that what it is really all about? God gave us a miracle and every day I thank him for blessing us with this beautiful, spunky, witty, little girl who gives the best hugs and melts my heart with her I love you’s.
*** Before everyone goes crazy with the walker picture, I just wanted to disclose that Mattie needs max help when using a walker. Usually someone has to stand behind her when she is using it. This picture was taken at a moment where she was able to balance herself and walk a few steps on her own. Progress!