Brian’s birthday party is on Sunday, and he turns 6 years old! I can’t believe how quickly the time has passed. I remember holding my son shortly after he was born for our first “skin-to-skin” like it was yesterday. His squishy, football-sized, little body fit perfectly on my chest as we cuddled. I wanted to hold him like that forever.
Six years in, raising Brian has gone much differently than we planned. Lennox-Gastaut syndrome has thrown a giant wrench into the traditional stages of childhood development that most people enjoy. There are so many things that parents can do with their healthy 6-year-olds that we will likely never be able to do. It really crushes me inside every time I see Brian missing out on fun that he should be partaking in at this age.
I really think he would enjoy riding bikes. Brian loves going for rides in his stroller and in the car. His big sister, Coralynn, was around his age when she learned how to ride. I think Brian would also love hitting the drums. He loves listening to music and used to try to play when he was younger and more functional. I think he would be pretty decent by now if the seizures didn’t stifle that growth.
I do know that Brian and Coralynn would be best friends by now. Thinking of the shared memories they never had is the hardest thing for me to cope with. This would be the perfect age for them to go catch lizards in the yard, play video games, or shoot hoops with the other neighbor kids. Coralynn is great at playing with younger kids. I wish I could know the joy we should be having right now in watching them actually play and go on adventures together. Coralynn is a great help and a very loving big sister, but I’m sorry that our attempt to give her a little play pal hasn’t gone as intended.
As I encounter more people and learn more about life in general, it seems that things rarely do go as intended. The key is to adapt and make the best of the hand that is dealt. While Brian’s first six years have not gone at all as intended, we still (hopefully) have many years ahead together. Life still needs to go on, just in a way that’s different.
Brian’s LGS prevents him from doing many of the things that a healthy 6-year-old can do. But there are also many awesome characteristics he does have. In highlighting those characteristics, we can give Brian the best birthday celebration.
Brian loves to eat. Aside from his first birthday, when he was mad and had no interest in actual cake, Brian’s been enjoying donut cakes for his birthday. Mom stacks the donuts in a circle several layers high, and Brian chows down like a champ. They seem to be a hit with the other guests as well, and we think this year’s donut cake will be the best one yet.
Brian loves to sit and relax. He is a real connoisseur of fine seating. He likes to sample each chair he comes across, and he remembers the good ones. For his birthday, we’ll have comfy seating set up inside, on the back porch, and in the backyard. We’ll have football on TV inside, and maybe we’ll light the fire pit in the yard. Brian loves sitting comfortably wherever the mood is mellow.
While he sits, Brian likes to chew on something soft. We’re told that he’s “stimming.” We usually tie a bandana loosely around his neck, sort of like a bib. He loves chewing on that. He also loves chewing on the limbs of his plush animals. Occasionally he’ll swipe a shirt or something to chew on while we’re folding laundry. My flannel jacket was the latest casualty. For his birthday, we’ll have all of his chewy essentials washed and ready.
Brian really loves company. He’s very affectionate and enjoys cuddles. Getting to interact with other close family and friends is a great treat for him, and we’ll responsibly have the essential guests over for him to enjoy. Mom and I also appreciate the company (and the help that comes with it!).
Although his sixth birthday is going to be different from what one would normally envision, it is important to make the day as enjoyable as possible for Brian. We have to continue to find ways to enjoy time together within the parameters that life has given each one of us. We will do our best to continue to create happy memories, but in a different way. This is our normal, with love being the most critical part of it all.
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
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