Hurricane Beryl reminds us of all we take for granted

A summer power outage in our Houston home challenges our care plan

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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A banner for Valerie Tharp Byers' column, depicting blue and purple swirls dancing across a night sky, with the words

“Sweetheart,” a voice says as a gentle prod to my side starts to wake me. I growl incoherently. It’s got to be too early to get up. “It’s starting,” I hear my husband say. “The bad news is that the power already went out. The good news is that I already made coffee.”

I growl again but start to shift around. It’s early on Monday, July 8, and Hurricane Beryl has reached the Houston area.

I force myself out of bed, hearing the rain pelting and the wind whipping outside, and shuffle to the kitchen where I accept a cup of coffee in the dark room. “Are the kids still asleep?” I was immediately thinking of our son, Will, who has Sanfilippo syndrome, and how the loss of power was going to mess with his routine. We’d finally gotten him settled in the new house, and I didn’t want to upset the balance.

“Yes, they are both still out,” my husband replied, “and I don’t see the point in waking them up yet.” I nodded in agreement, turning again to watch the weather show out of our window.

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The impact of storms

I wasn’t overly concerned. After nearly 18 years in the Houston area, we’d gone through several severe storms, including Hurricane Ike in 2008 (a Category 2 storm that knocked out power in our old house for two weeks) and Hurricane Harvey in 2017 (a lighter storm that caused significant flooding damage). I figured we’d lose power for a day or two, similar to how most neighborhoods had a power outage after a “derecho,” or a large cluster of thunderstorms, whipped through the area in May. However, this was the first intense hurricane for the kids, so I wanted to make sure we were prepared.

“You have the small generator ready?” I asked my husband, feeling assured when he said yes. That meant we could run our small air conditioner (to keep Will cool, as it’s difficult for him to regulate his body temperature), our refrigerator (to keep Will’s medicine cold), and our washing machine (to clean up the inevitable messes that come with his incontinence).

We’re on an installation waiting list for a whole home generator for our new house, but that won’t come until August, so making sure our small generator was ready to go was essential to Will’s care. We thought we were as prepared as we could be for a Category 1 storm.

A girl, two boys, and a dog sit near a small couch (or perhaps a love seat) and a coffee table bearing lots of dishes of what appear to be snacks. One boy is embracing the other from behind.

Members of Will’s family try their best to keep his spirits up and keep him on routine after Hurricane Beryl hit Houston. (Courtesy of Valerie Tharp Byers)

We were wrong.

The winds were much more intense than was predicted, affecting 50% of Houston’s urbanized area tree cover. This meant that many homes, vehicles, and power lines were damaged or destroyed. Instead of the one to two days without power we thought we’d face, we ended up being without power for six days. In Houston. In July.

It was sweltering.

Thankfully, our small generator held up, and we didn’t sustain any major property damage. We were able to keep Will cool, fed, medicated, and in good spirits generally, but this crisis served as a major reminder of how delicate our situation is. Will only thrives when we can meet his needs, and one storm can throw all of that off for an unpredictable amount of time. It was a frightening wake-up call about all the additional steps we must make sure we have in place just in case we face major power outages again.

The storm’s impact wouldn’t be just an inconvenience for Will; it could be deadly for him and so many others with medical conditions. It was hard to realize yet another reality where Will could be at risk, but we’re taking it in stride as best we can. Now when does that whole home generator arrive?


Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.

Comments

Patty avatar

Patty

Glad the small generator got you thru ! We installed a whole house generator last year ! Such peace of mind it brings when having Sanfilippo in late stages especially 🥰

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