“What should I get Brian for Christmas?”

It’s a question I get every year, but as the years have passed, it’s become increasingly difficult to answer. I used to be able to say airplane or dinosaur toys, which he once loved. Unfortunately, his seizures have taken such a toll on him that he’s lost all interest in toys.

In recent years, our reply to this question would be based on what he needs: things to chew on, clothes, and diapers. Our friends and family never fail to deliver and shower him with whatever is on his Christmas list. However, as his needs continue to grow, so does the number on the price tag. I would feel bad to ask for things that we, Brian’s parents and Brian, could really use.

So, on behalf of my son, I have listed some things we would ask for in a letter to Santa. At the top of the list is a cure for Lennox-Gastaut syndrome (LGS). It would be the greatest gift of all, and the list would end there, if only. For now, the seizures persist, and there are some other things that would make life so much easier.

First and foremost would be special needs equipment that actually works. It seems that everything we use to help transport Brian leaves a lot to be desired. We have a great big stroller for him, but it didn’t come with any cup holders or attachable trays so he can snack while we walk.

We use his wheelchair for school, and it moves nicely, but it can hardly contain him. He’s always slipping out of the straps and scooting down to the point of practically hanging off the chair. The tray attachment to his “happy eat-y” chair that we use at home straps perfectly to the chair, but he can still kick it up with his knees and dump food everywhere. Not to mention that we’re straining our backs to bend down to his level to feed him. A high chair big enough for him, tall enough for us, and “Brian-proof” would be so nice!

Another gift we would love so much is to have those awesome playground-quality swings installed in our backyard. Swinging is an activity Brian still loves to do because it is very calming. The park near us has large adaptive swings that provide full support and endless fun for Brian. He would swing all day if he could. I can imagine how much more fun he’d have at home if we had one right in our backyard.

We also like swings that help Brian work on his core strength, as he does a lot of sitting throughout the day. Any chance we get to make occupational therapy fun for Brian, we take it. That type of swing is big enough for his big sister to join in the fun, too!

I know that if Brian could ask for anything, it would be for more independence. Even with his helmet on, he still needs to be guided as he walks. Due to Brian’s high sensitivity to external stimuli, he often prefers not to be touched. If there were a way to totally seizure-proof his room, he would be able to walk independently and make his own choices. Everything, from top to bottom, would have to be soft and padded. I’m not quite sure what it would take to make his room seizure-proof, but I’m sure Santa has some ideas.

Last, but certainly not least (I’m sure this is on many other wish lists, too), our whole family would love to win the lottery, buy a camper, and travel the country. Some of Brian’s favorite activities include traveling in the car and hanging outside. Whether it’s sitting around the fire pit in our backyard in the winter or soaking in the sun and breeze at the beach, we love to be outside. I’d give anything to be able to pack up the camper, leave all of the stress behind, and go off the grid for a while.

So, Santa, has Brian been naughty or nice?

***

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.