Guest Voice: Anticipating LGS challenges as my son is growing up
Trying to project how everything will be years into the future is daunting
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Last week, my son, Brian, started sixth grade. With the elementary school years officially behind us, it is difficult for me to fathom how quickly time has passed. My little boy is now taller than his big sister and as tall as his mom. I even see hints of a little mustache starting to grow in.
While part of me is excited to see him grow and develop, another part of me is facing fear and uncertainty.
Physically, Brian has always been a big boy. He weighed 9.5 pounds when he was born, and both his height and weight have hovered around the 99th percentile his entire life. At 6 feet, 3 inches tall and weighing 220 pounds, I’d consider myself larger than average, so the physical aspect of handling Brian has always been manageable for me. But the time is coming when that will no longer be the case.
Due to Lennox-Gastaut syndrome, Brian needs assistance getting into our car, and I feel like he gets heavier each day. The slight lift I have to do to get his bottom into the seat is no longer easy. I don’t want to think about what that process will be like five or 10 years from now.
Brian loves going to school. I drop him off every morning and help him walk from the car to the entrance. Usually, he happily marches up the walkway. Sometimes, he decides to be silly and makes himself dead weight, sitting down right in the middle of the parking lot. I have to gently coax him and try to lift him up to finish the walk.
He thinks it’s funny, and I laugh with him while clenching my teeth and mustering up all of the strength I have to get him back onto his feet. He reminds me daily that I need to start hitting the gym so I can keep up!
For the most part, Brian has been cooperative lately about taking his medicine and eating his meals. I usually need to sit with him in bed and have him lie with his head on my lap and my legs over his shoulders, but he’s usually agreeable. Occasionally, though, like most preteens, he rebels against his parents.
I’ve discovered that, when motivated, Brian is extremely strong. It’s a struggle to administer medication or feed him dinner when he’s not “in the mood.” He’ll push my arms away and try to leave his bed. I can handle it now, but for how much longer?
While it’s getting physically more difficult, there’s nothing I love more than taking care of my boy. His smile, laugh, and hugs inspire me to shrug off the fatigue and keep on pushing forward. Trying to project how everything will be years into the future is daunting, but I cherish every moment that I get to spend in Brian’s company. I don’t know how we’re going to swing it, but I know we will.
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