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Much needed rest for epilepsy caregivers

Rachel’s Story

I just returned from spending two nights and three days with six women I had never met at a home that is located only a few miles from my own house. And I loved it! I absolutely cannot wait to do it again. Why was this time spent with strangers so close to my own home, away from my four kids and husband so special? Let me fill you in.

Much needed rest

A respite inn designed for giving caregivers a much needed rest opened about two years ago in my hometown. It is located so close to my house it seemed silly to even consider staying there. How could a stay in a home so close to my own provide me any kind of rest? I finally decided though after hearing from so many others on a social media group as to how restful it was to stay that I would go ahead and make a reservation. I booked a room for a stay which was eight months away. If I needed to cancel, I had a few excuses ready and waiting if needed. My son was sick, my mom needed my help, etc. If needed, I could back out. The weekend approached, I received an email reminder from the owner about my stay and she asked for confirmation that I would be coming. Did I really want to go? I knew I needed a break, but did I REALLY need a break? I had just come back from a family vacation. I was good. I rarely get away from my four kids. I can count on one hand the number of times I have actually done that in 21 years as a mom. I was just about to cancel, when my husband pushed me and said, “just go”. So, I did.

Rachel’s experience with A Mother’s Rest

I arrived at 5pm on a Friday evening at The Terrace Guest House in New Market, Maryland. From the street you will see the house is a beautiful, all brick, historic tavern home nestled among other historical homes in a very quaint and charming town, but the home is located on Main Street which is quite busy. I have to admit I’m a little skeptical. How am I gonna rest here?

I enter through the front door and immediately a warmth takes over. Oddly, the sounds of the passing traffic are non-existent. The steps I am taking on the rustic hardwood floors are the sounds I am noticing now. It’s clear this house has some history to it. It’s beautiful inside. The stairwell is right in front of me, but I am drawn straight ahead to the kitchen. It is full of the modern amenities that are necessary in any state of the art kitchen today, but the wood beams add a homey, old timey warmth. On the butcher block countertop is a sign that welcomes me and the other six house guests. A quick turn to the left is a sun porch that overlooks an immaculate backyard garden area. The area is bustling with colorful birds, energetic squirrels, cute chipmunks and rabbits. (I didn’t realize it then, but I would soon be enamoured in every move all these creatures would make throughout the day.) I find myself admiring things like the wallpaper, and touching the lush blankets draped over chairs instead of what I am usually looking for which is a way to get my son’s wheelchair in and around the house, or picking out the best spot to change him. I am drawn to continue exploring this warm, inviting space. At each turn, every decoration, detail and furnishing is perfectly in place. There’s a lot to explore here. Thankfully, I have all weekend to do so.

A little background on LGS

In the living room of the house, I was welcomed by four of the guests. We shared a little about ourselves, and a little about our sons and daughters who share the same diagnosis. Our kids all live with the diagnosis of Lennox-Gastaut Syndrome (LGS). LGS is a rare form of epilepsy. Those who suffer from it deal with daily seizures, take many medications that do not offer much help, often have intellectual delays and/or behaviour issues, and a host of other issues. We live in different states, have different aged kids, but our stories were all very similar. Most of our days are taken up with scary seizures, medication dosing, doctor appointments, diaper changing, therapy appointments. I had never met these ladies, but very quickly realized we were living very similar lives, full time caregiving and very little rest. They were just as educated as me on CBD Oils, epilepsy medications, excellent doctors and hospitals, ER visits, behaviors, seizure safety. It was refreshing to be around others who get all that comes with the LGS diagnosis.


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The arrangements

My four kids, including my 21 year old son who is diagnosed with LGS were at home with my husband. He would pull double duty this weekend, taking time off work, and taking care of all the activity at my home. One mom had arranged with several different caregivers in several different homes to stay with her son so she could be there, another had relied on close family members. We had all made arrangements long ago, some easier then others just so we could benefit the most from this much needed time away.

Very quickly, we learned that we all were coming from pretty much the same place. We understood each other. We know how common it is for others to take an uninterrupted night of sleep, time alone, time to just read a book, or to eat a meal, or to shop without anyone else for granted. These weren’t things we were used to. We were all here to simply get some sleep, have some quiet time, and to just get a break from the caregiving we do every second of our days. We wanted to sleep without our child screaming for us, or without a seizure waking us up. We wanted to read a book in one sitting. We wanted to eat at the seafood place we usually cannot eat at because our child won’t sit at a restaurant quietly for that long of a time. It was immediately clear we were all grateful to be away here in this cozy space with other mothers who can relate.

True relaxation

Our first (and only) important decision of the night, was where would we have dinner? And guess what? We really did eat dinner at a restaurant we chose, at a time we chose, and we simply enjoyed the taste of the food, all while enjoying each other’s company. During dinner our conversations turned to favorite movies or tv shows, favorite mixed beverages, what we would be doing in our own free time this weekend. The worries of seizures, administering medications, caregiving had thankfully taken a back seat. That was so refreshing.

We arrived back at the Inn on that first evening and enjoyed a little more conversation, and then we all went our separate ways. I was delighted to make my way to my comfortable room. I couldn’t wait to climb into the bed which was so plush and inviting. Gosh. I was truly alone. I am rarely alone. I chose to read. I could hear in the distance the racing of the cars on the nearby interstate. In another time, I may have been bothered by that noise, but here and now it was one last reminder for me for the evening that it was okay for me to take time for myself even though all the craziness of the world is still swirling around me. I am quickly, and happily coming to the reality that I have two more days here all to myself. I didn’t realize how much I had really needed this time. Now it’s your turn!

For more information on LGS, please visit ​www.lgsfoundation.org

For more information on respite, please visit ​www.amothersrest.org