Chesapeake Down Syndrome Parent Group Baltimore, MD

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Finding Our Way Down the Path

Jackson was 2 years old and I was still struggling to accept his diagnosis, the medical issues, the therapy sessions, and scheduling demands of balancing a nursing career with motherhood. This path we were on was so unfamiliar and so full of pot holes. I loved this little boy but could somehow not reconcile the grief. I hadn’t chosen this path. I didn’t think I was strong enough to walk this road.

The company my husband was working for had awarded him a trip to Key West. I was not sure I was equipped emotionally to leave Jackson or his medical issues in the care of my mother but I desperately wanted to escape. So we went.

The last leg of the journey to the resort was a charter bus filled with Kyle’s colleagues. I had tuned out the noise of the bus until I realized “Forrest Gump” was being played on the television sets. I listened to the words with a new ear; punchlines of the script were like knives in my chest. The other adults laughing and imitating Forrest’s voice and meter. Tears streamed down my cheeks as I tried to stare out the window. All I could think about was how we were going to raise our beautiful boy in a world so full of ignorance? How could we prepare him for situations that we, as adults, couldn’t handle ourselves? How could I be a better parent?

Two days later, in the hotel gift shop, I found my answer. I stood at a display and cried once again. This time, they weren’t angry and defeated tears but rather from a sense of finding purpose. The words staring back at me said, “Prepare the child for the path … Not the path for the child.” I read it over and over and over again. Prepare him. Prepare HIM. On that gift shop coaster I had found my parenting mantra.

Whether it is an academic challenge or a personal obstacle, Kyle and I have taken the approach to provide Jackson with the tools to solve the problem himself. We don’t move the boulders out of his path. We want him to find it within himself to climb over it. Of course there are failures and setbacks, but can’t we as parents say that for ourselves? We don’t want Jackson’s path to be smooth because that’s not the real world. The biggest challenge is far ahead when he is on this earth without us. There will be people walking alongside him, but it won’t be us. It is our greatest hope that by then his tool bag will be overflowing.

From the southern-most tip of the United States, I found direction in parenting with a principle to follow. Right now Jackson is staring at a massive obstacle called Middle School. We are fighting for inclusion but it is Jackson that is doing the real work. We might be able to open the door for better opportunities but by doing so, we ultimately hope to keep filling his tool bag. I may not be able to effect change in the minds of others but I will keep trying. In the meantime, I can keep preparing Jackson for the path, whatever that might be.