After we finished breakfast, Brian was freed from his eating chair (a donated wheelchair with a seatbelt and removable tray). As I was brainstorming fun morning activities with his big sister, Brian sauntered on over to his bed-tent. He’s recently enjoyed tumbling and rolling around slowly on his bed. It’s not necessarily a sign that he’s tired; he also splits his tumbling time with Mom and Dad’s California king bed. He babbles, kicks his feet up, sits, rolls, and generally just enjoys “hanging out” on the beds.
I followed Brian into his bed-tent and lay down next to him so we could wrestle around. I noticed his eyes seemed droopy, but this was about two hours before his “usual” nap time. It was nice and quiet in Brian’s room, aside from the creaky ceiling fan. Brian started chewing on his right pointer finger. He reached his hand out toward my face and stuck a couple of fingers in my mouth. He then surprisingly closed his eyes and fell asleep with me chewing gently on his fingertips.
However weird that sounds, such unusual moments are not out of the “norm” for us. He’s been chewing on his right fingertips for a few weeks, and occasionally he offers up his left fingertips for me or Mom to join. It’s sort of like his way of breaking bread.
As we lay on his bed, I listened to his little snores. Actually, they’re more like little, gentle purrs. Watching him sleep peacefully, there’s no way to know how much his brain and body have been through just by looking at him.
There’s no way to really predict anything in life, and there are absolutely no guarantees. But I don’t think any parent is ever really prepared when their precious baby is diagnosed with a debilitating and rare condition.
I just wished I could play catch with him, you know? For a brief period of time when he was 2 years old, Brian would try to catch the ball, and he would seem to try to pass it back. That’s all been lost in the Lennox-Gastaut syndrome (LGS) fog.
I wished I could ask him what his favorite color is. Brian was once able to point out and say “purple” and “yellow.” I assumed these were his favorite colors since they were the ones he’d acknowledge most. This ability was also lost to LGS.
I wished he would come up to me, grab my hand, and give me “five” like he used to. He was always super excited to give high-fives, especially to his great-grandma. She missed his fives, too. We haven’t gotten a high-five in almost two years. I hope she can get one more.
I also wished I had Brian’s courage and strength. He sometimes tries to sit up right after a big seizure, head bobbling, body off balance, muscles still twitching. He babbles and tries to play it cool, like nothing happened. I feel like he tries to reassure Mom and me that he can take it. I can barely keep the tears in writing about it.
I wished I was as cool and collected as Brian during times of emergency. Brian once had a drop seizure and split his chin wide open after falling into his tricycle. The gash was over an inch long across the bottom of his chin. It looked like a hot dog that splits open in the microwave.
Brian cried briefly but quieted down after the initial shock. My wife, Jendi, and I were in full panic, trying to clean some of the blood, checking to make sure his teeth were still intact, deciding if we call an ambulance or drive him to the emergency room ourselves. Brian just quietly waited for mom and dad to chill. We were more distraught than he was, and he was the one with the meat hanging out of his chin. What a champ.
I wished I was as content and optimistic as Brian. When he’s not seizing or smashing his chin on anything, Brian is really mellow and happy. He doesn’t nag, he doesn’t complain. If we sit down to watch TV, he’ll happily sit. If we decide to go for a walk, he’ll sit nicely in his mega-stroller or get some steps in himself and enjoy the outdoors. If we host a cookout and have friends in the yard, Brian will happily sit out back and “mingle.”
After daydreaming an entire Christmas list of wishes, I grew exhausted, too. Brian’s finger was still in my mouth, but I left it in there and crashed with him. Is that weird?
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 Services, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
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