This is Kali. She has Shwachman-Diamond syndrome. It is a rare disease. It affects the body in many ways, mainly the skeletal system, pancreas and bone marrow with so many issues that stem from it including failure to thrive, bone formation abnormalities, blood issues, compromised immune system and more. Tube fed twice a day, 16 pills a day and shots several times a week. She is 2, blue eyed, whispy haired and full of so much life. She has a family, not much unlike mine or yours and she is a beautiful child, not much unlike mine or yours.
This is the second of my three model calls this year. It was really hard to pick families because I know everybody deserved it. But when Shelly messaged me I knew this was a story I wanted to help her tell.
I walked into their house, Kali had just gotten into the peanut butter jar and had used her fingers as a spoon. (Sounds like my kids.) She was shy at first, but both her and her brother were showing off before I knew it and running around the house in circles.
Part of my job this day was really easy. But it was really hard too. The joy, hardship and passion rolled all into one. Only a family who has suffered the serious illness of a child can know this particular ache.
Since I have never experienced this for myself, I thought it was appropriate to use Shelly's own words that she wrote to me before we met.
Shelly gets the injection ready while her children play around her.
Then she gets Kali.
The entire process was much softer than I imagined it being. Kali cuddled in mom's lap while she distracted her with a pretty band aid. Mom tenderly sat with her children with big brothers help and seemed to be filled with patience. I'm sure it's not always easy every time.
Shelly asked specifically that I capture this part of their story for them, and I am so honored and happy to be a part of this. Some day, when the kids are older they will have a better understanding of what their mommy did for them and the love that she poured out daily to juggle the doctor appointments, the pills, the tube feedings, the sanitizing.
Big brother is getting ready to help with Kali's medicine, he seems pretty happy to be smiling for the camera! Don't you think? He really was a light for a sad moment.
One thing I realized after the shots were done, she was ready to play and is exploding with life. Kali is not a diagnosis. Shelly and her family are not a rare illness. Disaster struck their home and now they stand strong in a storm, but they themselves are not the storm. When your life is filled with one thing or another, it wears on you, you walk in a haze. But just because you are tired, or sick, or barely making it, you are not the problem, your sickness is not what defines you as a person with a living soul. You are separate from this. That is what I saw in this family, I wish I could articulate it better.
If you would like to follow along with this story you can meet them and find out more at Kali's Quest with SDS.