One Sunday morning, we waited before heading to church. Annie had been increasingly weepy during the previous week and I had seen partial seizures breaking through. I was still unsure if I needed to call the neurologist and ask, “Which of her four anticonvulsants shall we increase, if she’s not maxed out on everything already?” On Saturday we had prepared for church on Sunday. Baths were done, food prepped and diaper bag checked. Someone recently chuckled when I mentioned that we do all of this on Saturday, because I don’t think people actually realize all it takes for us to get there on a Sunday morning.
Kirk packed the vehicle and got Annie buckled in the car. Audrey and I stepped outside and stood still, iPad in hand. I’ve learned that it’s best to allow her some time to process, so...I waited. After a few minutes, she got in and away we went. We were even on time.
During the service, Annie began showing signs of seizure activity, but with my team of family and friends on the back row, we persevered, gave afternoon meds early and stayed in the service. I never felt judged nor that we bothered anyone and for that I’m grateful. Annie held her head with her hands, changed seats, laid down and went between weeping and pinching. She cannot communicate her needs well, but this is how she responds to seizures. It’s not aggressive behavior.
Audrey patted Annie on the back in comfort, though her own movements and vocalizations also seemed a little “off” to me, a sign that I previously missed. At the very end of the service, the music played and I looked over to see my mom and Audrey hugging tightly in the back corner with loud, guttural wails coming from my sweet girl. Pain? Seizures? Dizziness? More communication difficulties, just like her sister. It’s not a bad behavior.
This lasted more than a few minutes and throughout the benediction. At some point I sat down, and my good friend Karey sat with me. Our tears welled, though this time they did not overflow. I felt strong. The crying in the corner was escalating and my sweet, church-loving Audrey was held tightly by my mom. My heart ached and I wondered, not “why God?” but “how Lord?” Karey rubbed my back and I prayed silently: for help, for wisdom, for miracles.
“And He walks with me and He talks with me and He tells me I am His own.” The familiar old chorus rang through the church and for a few more minutes, we waited. Suddenly, Annie was triggered and started crying again. Aiming to leave, I quickly grabbed our many things and walked her to the welcome hall, where we’d hopefully relax with a coffee amongst family and friends. I took a deep breath, found us seats at the table and waited.
The service dismissed and my 18-year-old son was the first to arrive at our table. Realizing the girls were upset, he had come to help. What a gift. Annie was calm, and after many others had left the sanctuary, Audrey and my mom emerged through the doors into the welcome hall. Still hugging, still wailing, they made their way to the back corner near the coat rack. My mom was following Audrey’s lead and there, she waited. I soon went over and after pushing me away, Audrey then chose me for the tight hug. Tight hugs are her choice to get through these difficult times, and I’m glad of it as this was not always the case. It seems she knows this is better. Anti-anxiety medication has helped and we know this ability to self-regulate is great progress. We hugged as she sobbed, leaned against the back wall, and now I waited.
Photo credit: Erika Giraud on Unsplash.com.
Things carried on around us, and I’m glad they did. Sign-ups for events, coat collection and conversations ensued. A new friend walked by and encouraged me that, “THIS of the Lord.” I was okay and felt stronger as we held tight.
Eventually Audrey transferred back to my mom and they walked to the opposite end of the room. She was calming down and the clutch became a cuddle. The seizure subsided. Typically it’s about a 45-minute ordeal, which it was that day. I returned to the coffee table group, and somehow relaxed and enjoyed conversation as we waited.
As soon as her long-time favorite friend Tracy arrived at our table, Audrey popped up and joined the table too. She smiled and sat close to Tracy. I knew the wait was over.
Lately I’ve been focusing on being thankful. I‘ve posted “thankful posts” every couple of days, trying daily to find something to thank Jesus for. Mine is an ongoing season of caregiving for my 16-year-old twin girls who both have disabilities and will never live independently. But there is ALWAYS something to thank Jesus for.
Today, as we drove away from church, a parade of geese stopped us—and a long line of other cars—in their tracks. We all waited. Something so mundane and slightly annoying just wasn’t. It was sweet and made me smile, as we watched and waited.
Today, I am thankful for so many things. For the peace I had today. For the ones who prayed in their seats, for those who asked if we were okay, for people who witnessed something we’ve lived mostly privately, many times over. I’m thankful for Jesus who was right there with me, with my girls, with this body of believers, who simply were there, alongside us, while we waited.
Andrea Foster is a disability ministry consultant, wife and mom of four teenagers. Her two youngest are twins who have Tuberous Sclerosis Complex. She is a certified Leader for Beyond Suffering – A Christian View on Disability Ministry (Joni and Friends). Follow Andrea at http://www.andreafoster.ca/ and on Facebook.
