Article

What does intentional advocacy look like? CVI mom Stephanie Kung shows us

Stephanie Kung, (@stephaniebluebirds) talks with us about inclusive communities, parenting Rosalie, who has CVI and a rare disease, and more.

Stephanie kneels and smiles next to a smiling Rosalie in front of a bright blue slide at a playground.

It can be a challenge to build a support system when you parent a child with complex medical needs. Stephanie Kung knows this firsthand. As the mom to Rosalie and an advocate for children with rare conditions and CVI, she has learned it takes significant work to connect with others who also see the world through what she calls “the rare life lens.”

“Social media has been a gift,” says Stephanie. “Initially, that’s how I found a lot of… other CVI parents. It is a big challenge to find people in your local community, at least it has been for me.

“You try and surround yourself with people that also get it and can give you guidance or feedback or base-level support.”

Stephanie shares her journey as a self-described “medical mom” to a child with multiple complex needs on Instagram @stephaniebluebirds. She’s also the founder of Everyday CVI, a blog full of tips for making life more accessible for kids with CVI.

Her daughter, Rosalie, represents many communities of kids. She has been diagnosed with hydrocephalus, CVI, cerebral palsy and, most recently, a rare and severe form of epilepsy called Lennox-Gastaut Syndrome (LGS). In many ways, she also represents most six-year-olds. She loves dancing, all things Cookie Monster, and music.

“I feel like we’re a walking DJ everywhere we go,” Stephanie laughs. Even in quieter spaces like an elevator, they carry “a little speaker of music or some musical toy. I’m just used to that, but you really feel it when you’re in public.”

Stephanie and Rosalie are bundled up in winter hats and coats and smiling.

An inclusive community where ‘she feels known’

Just like Stephanie relies on her social media support system, Rosalie needs a community that meets her needs. They recently moved to a new state, choosing the location with intentionality. Stephanie and her husband knew they wanted to live where they had access to:

Most importantly, “we want to be in a community where we have a social network, where we have friends, where we have a life that she is included in, where people know her and she feels known.”

Wading through challenging times

Stephanie credits a consistent routine with a touch of flexibility for helping her manage the many moving parts that make up a week, from doctor’s appointments to therapies to homeschool lessons.

“I think that we’re all learning, and nobody has it all perfectly figured out because life will throw you curveballs. And so part of it is just being able to learn how to pivot, how to be flexible, especially when you do have a child with all these complex medical conditions.”

As organized and competent as she is, there are still moments when she feels like she’s treading water. When Rosalie received an LGS diagnosis, a form of epilepsy that impacts child development and is very hard to treat, Stephanie had to pause and take stock of the situation. Instead of rushing forward, she first reached out to people she had met online who could provide guidance.

She also remembers the intensity of putting Rosalie on a medical ketogenic diet, which is a strict process requiring a hospital stay and a complete revamp of the child’s dietary lifestyle. She wondered how they would ever work the diet into their daily routines and how she would be able to feed her whole family — including herself! 

“I could only feed Rosalie when she was on this diet. Thank goodness I had my husband supporting me and he made sure that everybody else in the family had food and ate… because there was no way I was going to be cooking dinner. That was just a time when I felt like everything was so challenging.”

Family dynamics

Balancing the priorities of each member of the family is a challenge, too. Stephanie also has two sons with unique interests and needs. 

“The things that Rosalie has access to are not always the same things that her brothers are going to have access to. Of course, we want to include Rosalie whenever and wherever possible. She’s a part of our family and we don’t want her to be excluded or feel left out. And that can definitely be a challenge when we’re choosing what types of activities we’re going to do as a family or where we’re going to go for dinner at a restaurant.”

Family trips must be planned carefully, which leaves little room for spontaneity. After a lot of practice, Stephanie has a system and checklists for all the logistics, including:

Even for local outings, “We have to be strategic about what time of day are we going. Do I need to prep her bedtime meds and bring them along? Do I need to pack her food because she has a feeding tube and she can’t just get food at a restaurant? It can seem overwhelming at first, but the longer you’re in this life… it’s part of your routine.”

Rosalie and her brother sit next to each other at the bottom of a roller slide and smile.

One thing Stephanie has not had to force into balance is her sons’ love and protection for their sister.  When Rosalie was born, Stephanie and her husband used child-friendly explanations to teach the boys how to safely play with her. Now they naturally adapt their interactions to accommodate for her CVI and other needs. 

When friends come over to the house, they are role models for their guests. They might say, “Oh, you want to play with my sister. Let me show you what she likes to do,” Stephanie says.

“They’ve kind of become little advocates. And it’s not necessarily from their perspective of trying to influence the world and become these disability advocates. It’s just naturally how they play with their sister and then invite their friends into that world.”

Going the distance to improve quality of life

Stephanie and Rosalie made an 800-mile road trip to an intensive therapy program — just the two of them. Needless to say, Stephanie was nervous. She knew the program was a great fit because she had done her homework and this would be their second session at the center. But how would they make it all that way?

It took longer than it would have with the whole family involved, but they made it thanks to a little kindness from strangers. Learning to take help when it’s offered doesn’t come easily to everyone, but it’s an essential skill for surviving in this world!

The program went beautifully with Rosalie making nice gains and maintaining her happy demeanor despite the tremendous effort she had to expend each day. Fortunately, the team of therapists took the time to understand Rosalie as a whole child and her needs as a kid with CVI. They quickly learned that a private, quiet room is a better environment for Rosalie than a gym with multiple sessions occurring and made accommodations without hesitation. They also spent time working on a useful setup for Rosalie to use augmentative and alternative communication (AAC), ensuring visual accessibility, using Gestalt language processing, and adding tactile components to guide her.

Intentional advocacy

Stephanie maintains certain boundaries when deciding what to share online about her experience, mostly out of safety concerns and respect for her three children. She does not share her sons’ names (upon their request), private medical details or medications. She says that at the end of the day, it’s a matter of weighing the pros and cons of any given post. 

“Is it beneficial to share? Is it going to be healing for me or is it going to cause me stress? If it’s healing for me, then great. I am happy to put that kind of content out there because I think those are the types of vulnerable posts that other people [relate to]. And so for me, I’m comfortable saying certain things out loud just because I don’t want to feel alone and I want other people to know that they’re not alone as well.”

Celebrate the ‘inchstones’

It’s healthy to recognize the small victories and appreciate a child’s achievements in the moment. Stephanie shares sound advice: “In this medically complex world when we have kids that have so many different disabilities, you learn to really celebrate everything. It’s not just the major milestones, but also I like to call them inchstones.”

SHARE THIS ARTICLE
Shea hold his son Koen showing him a large red adaptive communication switch.
Article

Celebrating CVI dads: Shea and Koen

Read more
Story

How Bruce creates joy while living with CVI and Angelman syndrome

A young Nolan wears glasses and smiles.
Article

“Have you ever heard of CVI?” A parent story of persistence and support

Read more