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The Surgery That Changed My Life as a Mom With Cerebral Palsy

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I enjoy motherhood! I cherish every moment with my kids and doing whatever I can with them. Recently I was approved through my county’s school board for volunteering at my son’s school. My son is 3 and has mild autism (ASD). He is in an autism cluster Pre-K class and I go in every Tuesday and Thursday and do art with the kids. It’s really fun and quite hysterical when I come home covered in finger paint or glue. I love to sing and dance with the kids. They read stories during circle time and go over the day’s art project. I volunteer about half the day, then I go back home and do any housework or errands that need to be done.

It may not seem like much, but up until September 8, 2017 I couldn’t even fathom doing that kind of activity. In fact up until that day I honestly felt like a failure because I couldn’t do some of the things many other moms can do with their kids, such as running an errand alone. Don’t get me wrong, I could do it but it took way more energy than it used to, and most of the time I felt short of breath doing it, but I got it done by the grace of God. I have cerebral palsy.

It was not always like this. When my oldest son was a toddler, I was in my early 20s and I had the energy and the ability to do just about everything with him. Around my 27th birthday I started to notice a decline in my energy and an increase in need for a nap. Can I get an amen, moms? Not that I never needed a nap before, but now it seemed like an everyday thing, and when I woke up I had very little renewal in energy. Doctors often describe cerebral palsy as non-progressive, because once the brain damage happens it can not get worse. What most people fail to take into account is that the spacticity makes your body age faster because your organs and muscles have to work harder to keep you going through the tightness.

On September 8, 2017 my life changed forever. I had a selective dorsal rhizotomy also known as SDR. SDR is a surgery usually performed on children, but thanks to social media I found out Dr. T.S. Park in St. Louis, MO was successfully performing SDR on adults up to age 50. So I went for it and applied, sent in my evaluation video and my X-rays. In April 2017 I received the phone call of a lifetime. I had been accepted as a candidate for the surgery that would ultimately change my life.

Over the next five months, I anxiously awaited my surgery date. On September 5 I made the four-hour flight with my mom to St. Louis. This was not my first surgery, it was my ninth, though not all of them were for CP. From the ages of 12 to 15 I had three different surgeries to help reduce the effects of my CP. On September 7, 2017 I met Dr. Park in person for the first time. I was a bit star struck because I had heard so much about how his single-level version of SDR changed the way a lot of doctors in the world do the procedure.

Dr. Park examined me and looked at my mother and I. He was very straightforward, and said if I did not have SDR, in 10-15 years I would no longer be able to walk. I had just turned 30 less then a month before surgery and honestly I could not dream of living in a wheelchair. Dr. Park told me what would improve greatly and what I would need to do to get there. I now work out at least three times a week, and in the months leading up to surgery I worked with a personal trainer to build up as much muscle as I could so my recovery would be easier.

Throughout the excitement of prepping for SDR, I had left out the part of post-op recovery. I was in the hospital five days; three of those days I had a catheter, and had to lay flat on my back and had an epidural going right into my back. It numbed my lower back and legs, which was greatly appreciated. The only thing that really hurt was the incision site right at the L1-L2 vertebrae. I was so anxious to get out of bed and walk, and on day three I was given that opportunity. My first steps were so bouncy and free; I was able to rotate my feet while climbing stairs. It was and still is amazing.

Next thing I know, I’m at home. Two days after I got home, I was walking independently again, only using a cane outside for about a week. I went through 11 weeks of physical therapy and was released in early December 2017. I will have to do physical therapy exercises for the rest of my life, but thanks to the amazing rhizotomy team in St. Louis and the awesome physical therapists here, I have been given the proper tools to do what I need to do on my own, either at home or in the gym. Through the support of my family and friends, I am able to stay on track and remain accountable.

I am now able to play with my kids more, and volunteering does not put a strain on me as it would have before SDR. I can kneel without the feeling of my knees being on fire. I was even able to play on the playground with the  kids in Pre-K at my son’s school, going through tunnels, down slides, and even running with the kids. I still tire a bit more easily than others, but it’s no where near as bad as it was. I no longer feel like I need a three-hour nap every day. I walk with straight legs and my PT even told me if she would have seen me out and about and didn’t know me, she would have never suspected I had CP. I thought I’d never hear those words.

I am able to take my oldest out and about on what he likes to call “only Mommy and me days.” I can do that for longer periods of time than before and it is a blessing. I am still just a few months post-op, and it will take about two years to reach my SDR max potential, but it has already changed not only my life for the better, but my sons’.

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Getty image by Christin Lola.

Originally published: January 4, 2018
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