This is Kali | Duluth, MN | Lifestyle Photographer | In-Home

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.

child
2 years old photography

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.

sillouhette, hair
Toddler

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.

shots syringe documentary

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.

We live a completely different life style than the average family. Our “normal” is seeing Sharps Containers, boxes being delivered, Kaiden calming Kali while I do her injections, pills, Kali receiving her tube feedings, but also you will see kids being kids. I never want to forget when times were so much easier before Kali’s diagnosis at 6 months. When I could look at both of my children and say, I made perfectly healthy, happy children.
— Shelly

Shelly gets the injection ready while her children play around her.

DSC_3123.jpg

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.

sitting in moms lap
feet hands

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.

family pictures
mom and daughter
bandaid on her knee
medicine
medicine can hurt
bandaid lamb thing

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.

happy diaper
the calm
siblings
running through house
funny faces
at the patio door window
Spring Pictures
blowing bubbles outside
2 year old girl
Family
Big Brother
Love

If you would like to follow along with this story you can meet them and find out more at Kali's Quest with SDS.