My Experience Staying at a Respite Inn as the Parent of a Child With Complex Medical Needs
I just returned from spending two nights and three days with six women I had never met at a home 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.
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. 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.
I arrived at 5 p.m. on a Friday evening at The Terrace Guest House in New Market, Maryland. From the street you can 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 had to admit I was a little skeptical. How was I gonna rest here?
I entered through the front door and immediately a warmth took over. Oddly, the sounds of the passing traffic were non-existent. Instead I noticed the sounds of the steps I took on the rustic hardwood floors. It was clear this house has some history to it. It was beautiful inside. The stairwell was right in front of me, but I was drawn straight ahead to the kitchen. It was full of the modern amenities necessary in any state of the art kitchen today, but the wood beams added a homey, old timey warmth. On the butcher block countertop was a sign that welcomed me and the other six house guests. A quick turn to the left was a sun porch overlooking an immaculate backyard garden area. The area was bustling with colorful birds, energetic squirrels, cute chipmunks and rabbits. I didn’t realize it right away, but I would soon be enamored in every move all these creatures would make throughout the day.
I found 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 was drawn to continue exploring this warm, inviting space. At each turn, every decoration, detail and furnishing was perfectly in place. There was a lot to explore here. Thankfully, I had all weekend to do so.
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 struggle with it deal with daily seizures, take many medications that do not offer much help, often have intellectual delays and/or behavior issues and may have 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 quickly realized we were living similar lives, involving 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 and seizure safety. It was refreshing to be around others who get all that comes with the LGS diagnosis.
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 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 for granted an uninterrupted night of sleep, time alone, time to just read a book, eat a meal or shop without anyone else. 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 where we usually cannot. It was immediately clear we were all grateful to be away here in this cozy space with other mothers who can relate.
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 might have been bothered by that noise, but here and now it was one last reminder that it was OK for me to take time for myself even though all the craziness of the world was still swirling around me. I was quickly and happily coming to the realization that I had two more days here all to myself. I didn’t realize how much I had really needed this time. If you’re a caregiver, a respite break may be just what you need, too.
For more information on LGS, please visit www.lgsfoundation.org
For more information on respite, please visit www.amothersrest.org
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