How My 3-Year-Old Is Teaching Me to Accept My Chronic Illness

Two weeks ago I finally gave in to my rheumatologist’s request and signed myself out of work on a temporary leave of absence. I have been fighting the leave for nearly a year. Doctors had told me repeatedly to take the leave of absence, consider my situation and give my body rest. I resisted again and again. I love my job, and I have given everything over for my career. I am the breadwinner for my family. I couldn’t take a leave of absence. The final straw was a monstrous flare that left me unable to sit up at my desk for more than 30 minutes without having to lie down in the next room. I was opening our building at 7 a.m. and needing to prop myself up by my elbows, on ice packs fifteen minutes later; it wasn’t good. I knew I couldn’t make it another week trying to hide the severity of my case. I booked an urgent appointment with my physician and left for the doctor thinking I would be back to my desk the next morning. By that afternoon I was being dropped off at home by a colleague with instructions to not come back to the office until I had taken a good, long break. And truth be told, I was heartbroken.

For the first time, I am being forced to face the reality of my disease and giving myself over to it — total surrender.

That afternoon I collapsed into my bed and cried for hours. In the midst of my grief, my 3-year-old climbed up beside me and laid her head down next to mine. She told me about her toe and how she hurt it climbing onto the couch. She talked about mosquitos and how her cousin is afraid of them, but she’s not, so it must mean she is a big girl. On and on she talked, about books, her dolls, her cousins — a 3-year-old stream of consciousness. Not knowing the depth of my sadness but recognizing her mom needed something in the way of cheering up, she stayed with me. When I needed to nap she laid down next to me, nose to nose and we fell asleep together. The next day was the same. At some point, on the third day she came into my room and woke me from a dazed sleep to remind me there was still a life to live.

“Get up now, mom. The sun is shining. We need to play.”

And she was right.

Slowly over the past few weeks, I find myself being less afraid of admitting my challenges. When I wear my compression sleeves, she plays dress up and decorates her arms. When I had double cortisone shots (one in each shoulder) I could barely sit up when I came home. My daughter promptly demanded two bandages to be placed on her shoulders, matching mine. She is my little healer. When I need compassion and a companion, when I can’t sit up, she stays beside me and colors or sorts her dolls in rows and dresses them. When I need a boost, she somehow senses it and nearly always demands, “Time to get up. Time to go outside, mom.” And she’s right. In the midst of this I have finally realized something imperative — my life is not in decline, it’s different.

I haven’t been able to accept this until I had this time at home, away from my desk, beside my daughter. These challenges, this change has felt to me like a downfall. In the past few years, as my health has faltered, I have barely used any of the “tools” I need. Being home and with her I see her acceptance of me as who I am today, and I wear the compression sleeves, use my voice-to-text translation systems, sleep through days at a time if I need to do so. She reminds me we will face this together. While the life I lead today is in stark contrast to the one I knew even a year ago, this 3-year-old girl is teaching me how the grace we give ourselves is the only way to survive in the face of fear and change. I’m still learning. For now, taking I’m taking one course at a time from my tiny professor. In her classroom there is only one requirement — total surrender.

Lead photo source: Thinkstock Images

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