When Your Child Gets the Diagnosis
March 22, 2018 | Posted in: Chronic Illness and Diagnosis
My last child is a worrier. She worries that her classes won’t be far enough apart that she can get to them ten minutes early. She worries that her cats will forget her while she’s gone. She worries that we will miss a train when we travel and be trapped forever in a foreign city where no one speaks English and she will be sold into slavery.
She may have some grounds for that last one. Traveling with me has made for some close calls with trains.
Four years ago, a doctor told her words that gave her new worries, ones no seventeen-year-old worrier should have. Worries about pain, and struggle, and death.
I went postal on the doctor.
I have inherited polycystic kidney disease. The only cure is a kidney transplant, which can take years because the waiting list for organs is so long. Many people die before they reach that magic match point, and most go through the struggle of dialysis several times a week. (Sign up to be a donor. Now.)
I watched my mother suffer and die from it. My daughter has watched me suffer and live through it. Everyone knew the girls had a 50/50 shot at losing the genetic lottery. We just hadn’t planned on buying our ticket on that day.
We went to get results from Beth’s MRI to find out whey she had persistent back pain. (Being a gymnast is usually enough reason.) The physician, who was ethically supposed to only be dealing with the back pain and keeping her business our of anything else, informed my minor child without preamble that her MRI showed the tell-tale kidney cysts.
We knew this. My husband had seen them when he saw the MRI. We knew what it meant. We had decided to tell our daughter at the right time, not at a time when she was already stressed out by college applications, final exams, gymnastics pressures, and life. The doctor usurped that choice for our child. And yes, for the first time in my life, I let a person in a doctor’s office know exactly how I felt about that, at a volume people in the next building could have heard.
I am not a dramatic person. But this was my kid. And someone had just told her she had a new worry for the rest of her life that she was not ready to hear. And she was crying. Mama bear is strong with this one. My eyes crossed and I yelled and I’m pretty sure sparks shot out or my nostrils. It was ugly.
But something beautiful came of the ugly.
Beth cried in the car. We talked. I knew exactly how it felt to get that diagnosis. By the grace of God He put words in my mouth that I did not know I possessed.
“Beth, you can use this either to get scared or to get brave. You can worry about it for twenty years or you can live like you’ve only got twenty years and you want them to count. You can be frightened and let that fear control you. Or you can choose to tell fear you have your huge mountain. You know it now, you have its name, and you can tackle anything else, because what more do you have to fear?”
My daughter is a brave soul.
I have watched her take those tentative steps. I have seen her make courageous decisions. I have known her heart and her fears as she steps out, and she has stepped.
She has looked at experiences that terrified her, like spending a semester in a foreign country, or standing up for immigrants, or learning who she is and what she’s made of (the scariest journey of all), and she has asked the fateful question—
What more do I have to fear?
Beth took something that could have swallowed her whole and allowed it to create power in her instead. She looked this horrible disease in the face and and said, “Not me. You don’t get to take me down. I will not live in worry about you.” She developed deep love for others who have far greater worries than she.
She didn’t step—she strode.
Sometimes, we are graced by God with the gift of children who make us want to stand in awe and clap. Loudly. Ferociously. This is a gift beyond expectation or belief. Five years ago, our youngest child, the worrier, heard a diagnosis that she would have to carry for her entire life. She decided not to let the worry win. I’ll watch her graduate college in two short months, strong and sure, and I’ll clap. Once again, I will be loud for my kid.
Jill is a writer, speaker, pastor, mom of three, and author of five books. She likes to travel, grow flowers, cause trouble, and research her next project. She believes in Jesus, grace, restoration, kindness, justice, and dark chocolate. Her passion is partnering with the next generation of faith. She blogs at http://jillmrichardson.com/.