Last Updated on December 1, 2023 by The Smetz Files
March is cerebral palsy awareness month.
This guest post is written by my dear friend and fellow educator, Kelley Wilson. Kelley and I instantly connected when we began working as literacy coaches for North Carolina Education Corps, an education nonprofit. Like me, she also works as an adjunct professor, teaching undergraduates who want to become teachers. Beyond being working moms and educators, Kelley and I share the unique experience of having husbands who are stroke survivors in their early 30s.
One of Kelley’s sons has cerebral palsy. To celebrate CP awareness month, she highlights the joys and challenges of being a mom of a child with differences.
I love her because she’s an amazing educator and colleague. I love her because she’s an incredible friend. I love her because she demonstrates strength and grace daily that I’m not sure I could muster.
Enjoy reading Kelley’s perspective.
Welcome to Holland – Our Perspective
Guest Post written by Kelley Wilson
Being a mom of a kid with a disability teaches me a lot everyday. When I was pregnant, I wasn’t expecting to be on this journey. If you have ever read Welcome to Holland it’s a wonderful poem about being a parent of a child with Autism. Lucas is diagnosed with cerebral palsy, but I still feel like the poem reflects our life. It talks about if you expect to go to Italy, but you get off the plane and you’re in Holland. It’s beautiful, it’s amazing, but you were expecting Italy.
This is a good way to describe our journey. Some days it’s not beautiful and amazing. Some days I would be happy to crawl into my bed and rest. And I give myself those days. There aren’t a lot because I don’t want to sit in sorrow, but I give myself a day to say “this stinks.”
Then the next day I’m ready to go. Ready to advocate. Ready to have more patience than I thought I could ever have. Ready to explain more things to the Nth degree. Ready to pray and pray over his social situations and try to help him work through the hard.
Lucas has taught me a lot. He is VERY inquisitive. He loves to ask questions. He ponders a lot. He will come back a few days later, and ask more about something we talked about. He is so determined. I think that’s why he is able to do what he does.
When he was little, it would be stacking blocks. Putting shapes in the right hole. You name it, he would try over and over and over again until he could do it. It was so hard to watch, but when he would get it, he was so excited and proud of himself. When he started liking football, he would spend hours outside with his dad playing catch. He didn’t like the ball to get wet or dirty from the grass, so they would mostly play on the street. But he loved it. Lucas was determined to figure out how to catch. He will still hold my hand when we are walking. Sometimes it might be for stability, but he is still a cuddler.
The Unexpected
One thing I didn’t expect was the socialization piece that continues to be a harder battle. I did not love middle school when I was his age. I was trying to fit in. I didn’t know my place. I didn’t know who my friends were and who was not being kind.
Thinking of Lucas in middle school, and dealing with the normal part of middle school and then adding “being different” on top of it is very difficult. He has a small handful of kids who know him and love him for who he is. They help him and guide him. But kids continue to grow and change. He wants to fit in. He wants to do what others do. But that’s hard.
Trying to teach Lucas to be Lucas. Don’t try to be someone else. Be the kid who loves Mario. Who loves football, basketball, tennis and wrestling. Who is very good at math computation. Who needs extra sleep. Who still likes me to “come close’ when I tuck him in bed. Who is very inquisitive. But as I think of that, I think of telling myself the same thing. Be the mom I need to be. The mom who needs to figure out her schedule so she can work out. The mom who knows social situations are hard for Lucas so we have to say no to things. The mom who loves bedtime. The mom who cries in every IEP meeting. The mom who has to lean on Jesus a lot.
Grace
But I’m thankful we are not alone in this journey.
Jack, Lucas’ younger brother has learned compassion and empathy through this journey. He is very kind and helpful to Lucas. He gives Lucas a lot of grace. Now I’m not saying he is perfect, but he is a great brother.
We have an amazing group of educators who help him be successful. I don’t feel rushed when I have questions or have long meetings. I hear of things he is successful at and ways we need to continue to support him. I can be very honest with my fears for him and know it’s safe.
I’m thankful for the true friends he has. Who understand he is different, and love him for who he is. Who try to help him in social situations to do the right thing and understand what’s going on. I’m thankful for the parents who help keep me in the loop when I need to know something to help Lucas. I’m thankful for the friends who let me cry to them when things are just hard. I
’m thankful for Holland. Some days I wish I could have gone to Italy, but then I know Holland is where God wanted me to be. That He equips me or helps me find the people to help. That he allows me to share our journey so that hopefully we can help someone who is on a similar journey.
Follow Kelley on Instagram to read more of her family’s story.
