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Parenting With A Chronic Illness

Parenting With A Chronic Illness

Awoken by the soft mewing of a newborn’s cry, I turned over and swung my legs over the side of the bed. Before my feet reached the floor, shards of glass pierced through my heels. I could barely walk. This was a nightmare I couldn’t wake up from.

As the mother of 6 young children, I was clearly unprepared for the reality I was facing. In an instant, I was thrust into someone else’s life. Someone I did not recognize.

At the top of the chart were the words I most feared, Rheumatoid Arthritis.

I wondered out loud, “Who am I now?”

My grandmother’s hands were twisted and gnarled. Her knobby knuckles reminded me of tree branches, weathered and worn by the elements. Deformed by the ravages of this disease, self care was a distant memory. Looking down I traced my knuckles with the side of my fingernail. My hands still appeared slight and young.

What did the future hold for me?

Initially, I was wary of medication and interventions. I am not sure what I was more afraid of, the side effects of the drugs or admitting I wasn’t invincible.

This disease tried to stare me down, but I closed my eyes and pretended it didn’t exist. Try as I might, I always knew it was there. Far beneath my skin, a war was waging. This battle consumed every part of my being. I didn’t have the energy to get off the couch, much less be the mother I wanted to be.

I felt useless. Minutes turned into hours each morning as I maneuvered my stiff joints out of bed. A wave of exhaustion hit before noon each day. With each step, my legs dragged, reminiscent of the feeling you get walking through thick sand.

The laundry pile mocked me as it grew larger each day. Even if the pain subsided a bit to allow me to make the flight of steps down to the laundry room, the fatigue tied me to the couch. On a bad day, I felt like a thritysomething year old woman trapped in a ninety year old body. If this was my life now, what would become of me down the road?

My kids will grow up and leave the nest, and I will remain shackled to this disease. Above all things, I never want to be a burden.

I realized that I was existing as a spectator to my own life. More than anything, I wanted to sit on the floor and play with my children. I would give anything to be the active mom I wanted to be.

Medication has changed my outlook. Flares come and go, but overall, these drugs are gifting me valuable time with my children and improving the quality of my life.

To the outside world, I look perfectly fine, but I am always in pain.

Always.

I try to push this invisible illness away so it doesn’t interfere with my life more than it has to … until it does.

I won’t let the pain disappoint my children. I keep pushing until I can’t go any further.

The aftermath is a night where is even hurts to sit. Sleep comes easily, but doesn’t last long. The exhaustion lingers for days.

Rheumatoid Arthritis is so much more than joint pain. Please do not mistake my sluggishness for laziness. Through physical therapy I have learned that exercise will help, but it is not a cure-all. This disease is in charge. That doesn’t mean I won’t try to put it in its place. My ultimate goal is to become the healthiest me I can be.

Occasionally, the dishes in the sink may pile up, but it is not for any lack of effort on my part. Although, I may drag my feet, the desire is there. If you are my friend, please overlook my imperfections. I have learned that the dust that may linger on my countertops is not a reflection of my worth.

My chronic illness has not stolen my spirit, rather it has offered me the opportunity to know and accept myself for all that I am.

I will not let autoimmune disease define who I am.

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