Coming To Terms With My Son’s Disability

The last few months in our home have felt like a whirlwind. We have been through the process of getting my son new medical equipment, taking him to various therapy appointments, having procedures, seeing a new specialist, and watching him make improvements and even graduate preschool!

So, I had to take a moment to think about everything we have done and all my son has accomplished since the start of the year.

While doing so, I couldn’t help but think about when we were talking to his physical therapist about getting his wheelchair. When the topic came up, she seemed hesitant to mention it to me. We have been seeing this physical therapist for most of my son’s life so she has become like part of our family. She felt comfortable enough to tell me she was nervous to bring it up because she didn’t know if it would upset me. It was in that moment that I realized something: my son’s disability had become such a standard part of life that I didn’t even give it a second thought. I knew that getting my son a wheelchair would be something we would do at some point in time. From the outside looking in, these kinds of things seem like a big deal, and of course they are, but when you’re in it every day, it’s par for the course. 

I didn’t even know I was in such a place of acceptance until that moment. I have been doing a lot of thinking about how I came to be in that place. Here is what I came up with:

I gave myself TIME

My son received his Cerebral Palsy diagnosis a month after his first birthday. My husband and I had noticed differences in the way my son was developing within the first few months of his life. He was our first child, but I luckily had a developmental therapist in the family who received a lot of “Is he supposed to be doing this…?” texts. We were also able to get him into physical therapy, occupational therapy, TEIS, and developmental therapy when he was six-months-old. Even though we had prepared for the likelihood that our son would be diagnosed with Cerebral Palsy, it still was hard to hear. It has now been nearly four years of adapting and I can say that I have gotten pretty good at rolling with the (sometimes very hard) punches. It really did take some time, however. 

I did my RESEARCH

When I had the suspicion of a Cerebral Palsy diagnosis, I began researching. I spent so much time researching the diagnosis, the treatments, specialists, etc. I spent time talking to all of my son’s therapists about next steps. I gained a level of expectation. I have a background in the medical field working as a medical assistant which gave me a bit of an upper hand when it came to medical jargon and the often complex medical field. With each new specialist or diagnosis, the research started. To this day, I still ask a lot of questions. I often feel like I annoy some medical professionals, but I truly don’t care. I need to have the information to better care for my son. 

I found my VOICE

One of the most important things I did was finding my voice. I have always been someone who avoids confrontation. I didn’t want to ruffle any feathers or cause extra work for anyone. I was told so often that I am my son’s advocate. I wanted to be that, but didn’t know how, until a particularly traumatizing appointment with a provider where I felt so steamrolled and didn’t have the voice to speak up. I left that appointment feeling guilty. I had done my son a disservice and hadn’t defended him the way he needed. I vowed in that moment that that would never happen again.

I found my TRIBE

I have been fortunate enough to find a great group of people that support me and support my son. Some of my tribe members also have children with varying needs. We often say to each other “I don’t know YOUR struggle but I know THE struggle.” I cannot express how much I appreciate them! I have also collected an amazing medical care team for my son over the years. As I have said, his therapists have become like family. In all reality, so have all the other wonderful therapists in the clinic (even those my son doesn’t see) because they are still so invested. He also had some of the best people supporting him at school this year and I know they will continue to be of support to him in the future. I know not everyone is able to have that around them. I have been able to find support through Facebook, church, and other parents at therapies. I even happen to know a Knoxville mom that is available if needed (HI THERE, IT’S ME!)

I still need to give myself PATIENCE

I would love to say that I have this life all figured out and I never have a day where I struggle, but that would be one of the biggest lies of all times! Another very important thing I still need to do is give myself patience. The days are not all rainbows and sunshine. Setbacks — that knock you on your booty — happen. There are some days when it just becomes too much. In those times, I have to tell myself that it’s okay to have a moment. It’s okay to not feel okay. It’s okay not to be perfect. Is this easy to remember? Absolutely not, but it is true! At the end of the day as long as I know I have tried my hardest, it has been a success. My little boy still loves me and I know he is well taken care of. I could write more but I will stop myself here!

Moral of this story: Mamas, you’ll get there! You are doing a great job, you are seen, and you are loved!