Ok – for anybody who knows me or has ever seen me speak, this will seem the largest hypocrisy. I almost NEVER make it through talking about this disease publicly without crying. But I stand by this entry anyway – because at home, and in front of my daughter – we make a large effort not to….
Put Away Your Tears
In the process of getting a diagnosis of systemic juvenile rheumatoid arthritis for my daughter, there were seemingly endless tears shed. She was only three years old, our only child and the only grandchild on both sides of the family. The heartbreak seemed insurmountable and crying is an absolutely normal response to the frustration of watching a child struggle.
However, when the shock of the diagnosis started to fade and the denial gave way to resolution, I began to focus on what I wanted for her future. What I found is that nothing had changed in that regard. I still wanted her to be strong and self confident. I wanted her to believe in her dreams and give foundation to her aspirations by never giving up. I wanted her to still sing, laugh, play, and be joyful. Arthritis just meant different challenges to face, different open windows to find along side a closed door.
Around me though, everyone was still crying. My little three year old, was watching and learning. I could see her shock, watching tears slide down cheeks that were no longer smiling at her. She had no understanding of what was going on at all. She, as most children do, took her cue from the adults around. Did I want her to grow up learning that she should cry for herself? That she is somebody to be pitied?
In the more than eight years since then, I could count on two hands the number of times that I have cried in front of her because of this disease. Of course, we still feel like crying sometimes. There have been those moments that I have wept with her, showing her that I hurt too… that I would do anything to take away the pain. There have been tears hidden away in the dark solitude of night. Mostly though, we do not cry in front of her because of sadness. When family start to turn on the water works, they know to go outside and pull it together.
We save the tears for joy and pride at her perseverance. What she sees instead is that we expect that she will still accomplish all that she sets out to do. Despite the all the medications, tests, physical therapy, doctors, prognosis and worry… despite all of it, arthritis is a small part of my daughter. It is not her definition. Her song is not tears.