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Forging New Routines After Sudden Changes

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Forging New Routines After Sudden Changes
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As we packed into the car, our daughter, Coralynn, was excited. The holidays were firmly behind us, and today was the first day of the local recreation center’s basketball season.

Coralynn hadn’t played on a team since the fall, and she was ready to show off her skills. This would be her fourth season playing basketball at the rec center, and we’ve managed to make each practice and game a family event.

The indoor basketball court is surrounded by a second-floor walking path that offers a fantastic view of the basketball action below. When we started this routine a couple years ago, we realized that walking our son, Brian, up the stairs to the walking path and doing laps with him during Coralynn’s games was an efficient way to maximize our rec center time.

Given Brian’s daily seizures due to Lennox-Gastaut syndrome, this is one of the few activities we’re all able to do together. It’s a great place to spend some normal, healthy, family time together.

After a couple seasons, Brian was able to walk a whole mile every basketball evening. It takes 13 laps to complete a mile, and Brian worked his way up to walking the entire mile without stopping. We logged each mile in the rec center’s log book. If we walk 100 miles, we get a free water bottle!

On this evening, Coralynn escaped from the car and ran inside the rec center as soon as we parked. Mom and I followed as soon as we got Brian out and masked (helmeted) up. We walked Brian into the rec center and reached the base of the stairs. Brian hadn’t walked up any stairs since the fall basketball season a few months earlier, so how would he do?

After the first three cautious steps, Brian seemed to remember what to do. With Mom and me holding his hands, he stomped his feet right up and even skipped a couple steps. He did great!

We reached the walking track and let Brian loose. After his first steps on the track, Brian attempted to turn around and leave. Mom and I encouraged him to continue around the track, and he made it about halfway around the first lap before sitting down for a break. He plopped right down in the middle of the track and sat happily.

After a few minutes, we got Brian up and attempted to continue the lap. We spent the entire second half of the lap trying to keep Brian from turning around or popping a squat in the middle of the track. He weighs over 70 pounds, and I feel like that figure increases exponentially when he makes himself dead weight.

After slogging through the remainder of lap one, Mom and I attempted an ambitious lap two. I was optimistic that Brian just needed a warmup, or even a reminder of the track and our previous routine.

Unfortunately, we didn’t make it past the first turn before realizing that our familiar rec center routine had changed. It was hard to tell whether Brian’s inability to complete any laps was due to disinterest or disability. He had always seemed to enjoy his laps, but lately he’s been more difficult about leaving a comfy place to sit.

Regardless, the fact is that the situation has changed. Our previous rec center routine is now just a fond memory. Brian has a way of letting us know what he can and can’t do, and it was clear that hitting the track was a non-starter for him. A new normal routine must be forged within the confines of these abnormal circumstances. Life shows that it can change in an instant.

These changes can occur at any time and can encompass anything. From job loss to life loss, the spectrum is wide. The speed, magnitude, and scope of such changes can be very immediate.

I remember what life was like before seizures. Then, one day, they started. I also remember what life was like the year that we thought the initial seizures were gone. What a great year that was, hoping for success and health in the future. Then, the seizures came back, and that all went to hell.

I continue to be amazed at how thin the veil is between great times and horrible times. I guess that the takeaway for me is that the future is completely unpredictable. But if I’m still breathing, I will continue to give little Brian 100 percent of my love and effort. We will continue to forge new routines and traditions in our own “normal” way, regardless of the changes that life throws at us.


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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