As the hours into the trip went along, I felt more and more discouraged.
It started with my family of four going on an overnight trip. My daughter with Down syndrome had several specialist appointments in St. Louis over two days. We decided to spend the night in a hotel and make the most of our time between her appointments. Right before our departure, my husband was called into work for the night shift, making him unable to join us. My thirteen-year-old son would accompany us girls along to the big city.
The first day of appointments went well. When we finished at the hospital, we headed to the hotel. One night’s stay required multiple bags. Beyond the clothes and other necessities, my daughter required her bi-pap machine, vest therapy machine, nebulizer, and a Ziplock bag full of medications.
The first big task required us to get all the bags and machines into the hotel room. It was luggage Jenga as the three of us struggled to carry everything to the room. I started to bemoan that our life required so much baggage for only one night.
After settling in, I helped my daughter dress for the swimming pool. Swimsuits on, we headed to the pool. Though she is 16, I need to watch her closely while she is in the water. She gets unsteady in shallow water and can quickly go under. Even though it is an added responsibility for me, I know she enjoys splashing in the water.
After completing dinner, the medicines, and the nighttime routine, I was so tired.
My husband was not there to help unload the vehicle, set up the machines, or help with any aspect of caregiving. It was not his fault. I was not mad at him. It was a frustrating situation. I had been looking forward to a night in a hotel with my family, but it turned out to be exhausting.
There were fun moments, but it came at a cost. I went to bed feeling alone and discouraged.
Photo by Daniela Constantini on pexels.com
The next morning, we scurried downstairs for breakfast. As usual, my son didn’t want to eat. I dropped our silverware and napkins off where he was sitting before picking up a plate. I noticed a young woman watching my daughter and me. She began following us to the beginning of the line where the napkins were located. The young lady grabbed some napkins, said something I couldn’t understand, hugged me, and walked off.
“Is that your daughter?” I asked a woman scooping up potatoes onto a plate.
After seeing who I was referring to, she answered, “Yes.”
“I helped her find the napkins, and she thanked me with a hug,” I told her. I thought she may have seen the exchange, and I didn’t want her to think I was creepy.
The woman apologized, explained that they were working on social rules, and told me her daughter had autism.
I interrupted the apology and pointed to my own daughter, who was exploring the breakfast buffet. “I get it,” I told her. “No apology is necessary.”
With one look at my daughter, she knew I definitely understood.
In the buffet line, she told me her house was damaged, and they were temporarily living in the hotel. She was a retired special education teacher, and her daughter blazed a trail years ago with her autism diagnosis. After I explained that I was a speech-language pathologist, we connected immediately in so many ways. In another life, we may have been best friends. Here and now, we were two strangers on a similar path only few could understand.
We both had our children to attend to, so our meeting was brief. When I retreated to the table to enjoy my breakfast, I felt refreshed.
A few minutes before the encounter, I felt alone as a caregiver. To be honest, I was feeling a bit down about life in general, which probably had to do more with the exhaustion than anything.
Now, I was reminded that there were others like me.
I thought about the timing of what had occurred. Our families arrived for breakfast near the same time. In the large dining area, our families selected tables near each other. We were close enough for the young lady to see me with napkins and begin the whole interaction. I felt like God had ordained that meeting just for me. He worked out the timing to give me that brief exchange with another mom. I just needed that reminder that I was not alone.
In case you need that reminder, you are not alone either.
Evana is a wife and mother of two children. She enjoys serving in her church’s special-needs ministry. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
