Resilient is a word that has been used to describe me lately. Maybe it was used before now and I wasn’t paying attention, but I am now hearing it a lot.
I have heard it so many times, in fact, that I decided to look it up in the dictionary to make sure I understood what it meant. Webster’s defines resilient as “capable of withstanding shock without permanent deformation or rupture” and as “tending to recover from or adjust easily to misfortune or change.” It lists synonyms like bouncy, elastic, flexible, rubberlike, rubbery, springy and stretchy.
Resilient is one of the words that people like to use for parents of kids with special needs. “I don’t know how you do it” is also a popular phrase. If I am being honest with you, when I think back over the past three years – something I rarely do because I hate reliving it – I truly don’t know how I pulled it off either. I’m certainly not Superwoman.
When I learned that my daughter Ellie would be born with Down syndrome in 2018, my body felt the same as it does when you are driving down the road at 40 mph and you have to slam on breaks because a car pulls out in front of you. I stopped breathing and all of my muscles tightened while I skidded and pushed the break because I was about to crash.
I was still in that position when I learned a few weeks later the details of her physical condition. I still wasn’t breathing and everything was tense. But upon the news of her heart, my stomach turned and I could feel a switch flip in my brain. The tense muscles and holding of breath became permanent.
When she was born and I was split between her hospital bed and being at home with my son Jack, I learned what a full stop felt like. There was a tangible finality to the blissful ignorance that I had been living in, and I would never know life without being on that side of death again. Any amount of responsibility that I had felt until that point in my life was nothing compared to what I was given on the day Ellie was taken away to a different hospital to start to fight for her life.
In September of 2020, my chest pains started. I woke up in the middle of the night and thought I was having a heart attack. I had never dealt with indigestion or heart burn before, so I believed Ben when he told me that was probably what was happening. I took an assortment of antacids for a few weeks as the pain and my disposition got worse.
I went to see my doctor in October. He ran tests on my heart and took X-rays. He put me on medicine for acid reflux temporarily until I could get in to see his preferred GI doctor. “A lot of times digestive issues can manifest as chest pain,” he told me.
November and December were spent with the gastroenterologist. I had scopes and a colonoscopy, ultrasounds, bloodwork and tried different medicines. When none of that improved things, the OBGYN checked my ovaries and uterus because symptoms of these types of cancer can be similar to the ones I was having.
All the while, during the day continued the chest pain and dizziness, muscle weakness and a drop in heart rate to elite athlete levels. At night, I would wake up in pain and take handfuls of Tums. I started running a 5k every day while the kids napped just to make myself feel better. “If I can run 3.1 miles, then I am not going to die today,” I told myself.
At one 2 a.m. in the beginning of January, I woke in so much pain that I couldn’t sit up on my own. This happened again twice more that week.
“I need you to hear this, okay? When you are having panic attacks that are waking you up at night, it is not good. It has moved into severe. You have to do something about this,” my therapist told me when I told her that the GI doctor prescribed medicine for stress.
She knew that she had to flag me down. She knew that I was just going to put the box with “Panic Attack” written on it in my backpack and keep moving. She knew that I was already compartmentalizing and packing away the thing I didn’t think I had time to deal with.
“Okay,” I said. “So, what makes one have panic attacks at night?” I felt my chest tightening even more.
“Think of it like a charley horse,” she told me. “It’s like a muscle spasm that happens just right at that moment when you relax.”