March is a very special month for my family. It is Cerebral Palsy Awareness Month, which is our son’s main diagnosis. We take this time to appreciate and celebrate our son for who he is and all the great things we have accomplished (we also do this on the other 364 days in the year). I will take this opportunity to give a little glimpse into what our life is like as a cerebral palsy family. I always like to start off by saying everyone diagnosed with cerebral palsy experiences it differently, so I only speak from our experiences.
What is Cerebral Palsy?
To put it simply, cerebral palsy is a group of disorders that affects muscle tone. This can cause issues sitting, standing, walking, speaking, and so much more.
Our Backstory
I went into labor early with my son. When he was born, he was very small. He had meconium aspiration which caused a loss of oxygen. He also had a blood sugar that was so low the nurse joked with me about it being the lowest she has seen on someone alive (not the best timing for that joke). He had to be taken from Sevierville to Knoxville to spend the next two weeks at what is now the Dolly Parton Children’s Hospital. Over the next several months, my husband and I watched my son not hit milestones. I started him in various therapies at six months of age. Shortly after my son turned one, we received the official diagnosis and have spent the last several years adjusting and adapting to the crazy roller coaster we were thrown on.
What Cerebral Palsy Looks Like for Us
So what does this look like for us? Let’s start with what you can physically see. If you come into my house, you will see a lot of equipment. You won’t be able to miss this equipment as they are pretty large pieces. You will also see a series of shelves dedicated to my son’s tube feed supplies as well as a medical supply storage closet in the hallway leading to his room. You may also notice the layout of our furniture is a little strange. We try to allow for as much free space as possible to allow him to move about in his walker or wheelchair. We have also recently done some major renovating to make sure our house is as easily accessible for him as possible. A big thank you to my dad for basically doing it all!
Our day-to-day life is a little different too. I wake my son up about an hour before he gets ready so he can sit upright and let the food he received overnight from his tube feed settle in his stomach. I take this time to gather his clothes, medicine, lunch for school, and quickly get myself ready. He does attend school. He has a mix of general ed classroom time and spends time in the resource room. I have been so extremely fortunate to have had a good team at his school that has taken such good care of him.
Most days, my son leaves school a bit early so I can take him to various forms of therapy. He is currently in speech, occupational, and physical therapy with the use of an Estim machine. We also have appointments to see specialists periodically. When you have a child with special needs, finding the right medical care is so important. I found each of the providers we see either through my own research or through recommendations; even his dentist was highly recommended to us!
For a while, I had the idea that one day we would get to the point where we could just maintain. The older he got, the easier I thought things would become. Believing this really messed with my mental state, especially when something problematic would pop up. I have learned to just ride the waves as they come (the best I can). There is always going to be something new and it’s better to not try to control it.
What I Expect for His Future
So often I get asked what I expect for my son’s future. I have a very simple response: we want our son to live his life in the best and most independent way he can. All the therapies, appointments, and effort we all put in help us accomplish that.
What I Expect from Others
I want to start by saying something I don’t expect from others. I DON’T expect people outside of our little circle to know anything about my son’s diagnosis. I DON’T expect people to initially know how to act or know what to say. That being said, I DO expect kindness. Feel free to ask as many questions as you want. Please don’t avoid eye contact and don’t teach your kids to do the same. Encourage them to say hi to my son. They can ask questions, too. I will always offer kids to touch his wheelchair if they are curious. I love to show there is nothing to be afraid of.
A Quick THANK YOU
I can never discuss my son without taking a moment to thank everyone who helps care for him. I can’t take all the credit for his progress; in fact, I can take the least amount. My son works hard every day just to exist, and I am incredibly proud of him for that. His therapists have become more like family to us. We have been going there since he was six-months-old and he turns seven-years-old this summer. They have been with him through so much. His school team spends more time with him during the week than I do. Sending him to school was a terrifying thought for me. I am so grateful for the care they show my little boy.
You are such a strong momma! Thanks for sharing more of your story with us!