What It’s Really Like To Be A Parent With A Chronic Illness

By Dana Baker-Williams: For More Info, Go Here…

My heart stopped one day at the park. It was 2001 and my son, Tyler, was about 3 and running around like crazy, chasing balls and living it up. Kylie, who was less than a year old, pointed to the baby swing, so we moved over there and I pushed her over and over again, higher and higher each time as she laughed out loud and pumped her chubby little legs. Eventually, it was time to start the short walk home so I stopped the baby swing to lift her out of it.

I couldn’t do it. I was 35 years old and suddenly did not have the strength to lift Kylie up ― and I didn’t know why.

I had been struggling for months ― sometimes feeling weak and other times having numbness on one side of my body. The neurologist hadn’t found anything specifically wrong but had me work with a physical therapist. After a couple of months, it still wasn’t helping; I was now numb on both sides of my body. I had just started a new job that required a lot of traveling, so I kind of dropped the ball on therapy. Doctors didn’t know what was wrong so I just did what I do: I pushed on. Some might say that I was burying my head in the sand or shoving the issue under the rug, and maybe I was. Maybe I was hiding from it all.

After having to ask my neighbor to lift my daughter that day in the park, I couldn’t hide anymore. How could my body fail me so and ― more importantly ― how could I fail Kylie? In an odd juxtaposition, I was also feeling grateful. So grateful that I was with my friends who could lift her when I couldn’t, who were there to walk with us home and normalize the situation for Tyler.

Of course, it wasn’t normal and I had to face that. The next morning found me trying to get up the stairs to the kitchen. By the last five stairs, I was on my hands and knees, crawling up one by one. My body was on fire, and I was vacillating between needing to cry and rage and being stoic; I didn’t want to tell my husband ― to say it out loud would make it true. But he was in the kitchen and watched me fall onto the couch when I reached that top stair. The decision about what to do was no longer in my hands.

It meant going to doctor after doctor, each time leaving with more questions and no answers. Meanwhile, I got worse. I crawled up the stairs. I sat down to shower. I couldn’t run and play Ticklemonster with Tyler; I couldn’t walk around bouncing Kylie on my hip when she needed soothing. Hell, in the end, I couldn’t hold my toothbrush or a knife and fork and struggled desperately to hold my arms up long enough to wash my hair.

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