Olive's Story: A Smart Cookie Who Loves Crumble

Julie and her family relocated to Missouri from their home state of Arkansas to access better care for their daughter Olive.

Olive recently took on the Capitol with Little Lobbyists

by Julie Kauffman

My name is Julie Kauffman. I live in St. Louis, Missouri, with my husband Jared and two children, 11-year-old Olive and 3-and-a-half year old Wilder. (The half is very important!)

Olive is such a cool kid. She’s a total Disney person, so by default we’re all Disney people now. She loves rollercoasters, audiobooks, and podcasts, especially ones about film and television. She also has an incredible memory and soaks up knowledge like a sponge.

Olive has dystonic spastic cerebral palsy because I contracted HSV-1 in my third trimester, something that could happen to anyone; it’s a very common virus but the timing was about as bad as it gets. She’s nonverbal and uses gestures such as turning her head to communicate with us. She also has limited mobility and uses a g-tube for some of her nutritional needs, although she eats some food by mouth and is currently on a crumble bender (berry crumbles are emerging as the favorite, and she loves lording it over her brother, who does not get to eat dessert for dinner). Olive needs help with toileting, bathing, dressing, transferring in and out of her chair, everything. She’s dependent on us for her care.

While she’s considered total care medically, cognitively she’s a smart cookie, and is on par with her peers. She sometimes outsmarts me already!

Olive was born at our hospital in rural Arkansas. We were under the impression all was well but at 11 days old Olive was lifeflighted to Arkansas Children’s hospital, where she spent three weeks on IV antibiotics and then was sent home with a “let’s just wait and see.” We waited, and we’re still seeing.

Olive is growing into an incredibly smart, awesome kid. Medicaid saved her life and saved our family from financial ruin; I remember seeing a helicopter bill for seven thousand dollars, just an unimaginable amount of money, and just thinking, okay! Come and get it! Medicaid has covered every hospital stay, all three of Olive’s helicopter rides, physical therapy, occupational therapy, speech therapy, her speech devices, her supplies, her equipment (wheelchair, stander, gait trainer, orthotics) 13+ surgeries. Diapers alone are almost $1,000 a month.

Olive in a carrier on her mom's back at the top of a mountain. — "We took turns on the hottest day of the year carrying her up to the top of the Cahokia Mounds. She laughed the whole way because it was a horrible idea. But we made it!"

We relocated to Missouri when it became apparent that she couldn’t get what she needed in Arkansas. We didn’t know anyone or have family here, so it was a scary transition. One reason we chose to move was access to an education. The Special School District of St. Louis County is the largest special education district in Missouri, and they work closely with our local school district. At school, Olive needs one-to-one support from a paraprofessional who accompanies her to her classes; cognitively, she’s so sharp, and it’s critical that she get great education to prepare her for the future. She also receives therapies at school covered by Medicaid, and any technologies she needs.

Medicaid enables me to work as an accountant at an architecture firm that’s been great about offering some hybrid flexibility, and my husband works as a small business owner & furniture designer. This is something I want a lot of people to understand: I often hear that people on Medicaid should “just get a job.” We both have jobs! We both have college degrees! We like working! And I do a lot of jobs without pay or days off as Olive’s nurse, teacher, administrator, and assistant.

Plus, Olive is a little young to go to work.

Olive and a stuffed toy riding an adaptive bike.

Having a medically complex kid is not the hard part. Olive’s rad. It’s all the stuff that goes with it because you have to fight for everything. It’s important to remember that we’re not all coming to this life from the same place, and this could happen to anybody at any time. There’s this stigma associated with Medicaid, but this could be you tomorrow: An accident, a horrible situation, a change in a seemingly healthy pregnancy. Not all those kids have people to advocate for them, to be in their corner. That’s why even if Olive was perfectly healthy, I’d be here advocating for others, and I like to believe that somebody would step up for Olive, too.