Sparking Inclusion

PlaySpark co-founder Serena Murison wants tube-feeding families to go without the guilt – and know that their child belongs. 

‘All brains are beautiful’. This sweet, inclusive sentiment is one of many you’ll find on a vibrant range of apparel and accessories by US-based lifestyle brand, PlaySpark.

“Disability is not a tragedy,” says speech therapist Serena Murison who, five years ago, co-founded the platform with occupational therapist Kylie Jeffrey. 

“I want PlaySpark to help other parents who are beginning their disability parenting journey to understand that their child belongs here. Their child deserves equal access – and equal opportunities to experience this life fully.”

Today, what started as a passion project is a wildly popular online store, wide-spread community and trusty source of education and support. One that gained deeper meaning for Serena once her son, Rudy, entered the world on a wave of medical complexities. Some of which would see him joining the tube-feeding community.

At home in Asheville, North Carolina, where she lives with Rudy, her husband and their family dog Panda, Serena tells The Blend how she broadened her perspective on “real eating” by following her son’s lead.  

When did tube-feeding start for your family – and how did you feel about this at the time? 

Rudy was diagnosed with a very rare form of muscular dystrophy at six months old. At around that age, we were pretty quickly advised to pursue feeding therapy as his feeding skills were limited and his overall tone was low. When Rudy was 20 months old, we really began to understand and accept that feeding would remain a major challenge for him due to his slow rate of eating and aversions to anything that may be difficult to swallow. 

Despite my education and knowledge about tube-feeding prior to having Rudy, I still felt reservations and guilt that I couldn’t somehow “make it work” for him without a tube.

How do you feel about Rudy tube-feeding nowadays, by comparison?

After consulting with a feeding team for months, we made the choice to get the G-tube placed. It was an instant relief for all of us, including Rudy. He’s still able to eat whatever he desires orally – that’s often ice cream, mac-n-cheese, popsicles and cupcakes. But now, he’s able to eat as slowly and as little as he likes, without immense pressure from all the adults around him to get every possible calorie in. 

We have found ways to integrate feedings anywhere and everywhere we go. We see his G-tube as a literal life saver, energy giver, and integral part of Rudy's life. I look back at myself from months ago – when feeding Rudy took the majority of my mental space and energy – and I feel so grateful to myself for trusting that this would be the right choice for all of us. 

What are the biggest challenges you’ve faced – and perhaps still face – in Rudy's tube-feeding experience? 

I would say the very biggest challenge we have faced and continue to face is the ableism that comes alongside tube feeding. It is so deeply ingrained in our culture to believe that food should be consumed in one way. Anything other than oral feeds are seen as a “less real” way of eating. 

When Rudy has a day where he eats nothing by mouth, sometimes I catch myself feeling like a failure at the end of the day. Where did I go wrong? Is he done eating forever? 

I am now able to quickly catch myself when thoughts like this come in and give myself the reminder that even on days where Rudy chewed and swallowed nothing, he is fully nourished and sustained. He is the one in charge of what he chooses to eat orally and not eat. He is leading these decisions and we are supporting him in that. 

Can you tell us about a memorable tube-feeding situation you’ve found yourself in? 

The most interesting tube-feeding experience we’ve had was at our public library. Rudy was playing with a group of children and it was time for us to leave. We needed to do a quick feed before heading back in the car and I was trying to be discreet about it. Pretty much immediately, one of the children from the group saw that Rudy had a “plug” in his stomach and asked what it was. 

Before I knew it, a group of 10 children sat around and watched me fumble my way through a syringe feed. It had only been about two weeks since the tube had been placed and I was still learning. By the end of the feed, I had conducted a full impromptu mini-lesson on tube-feeding to a very captive audience.

How has being Rudy’s parent impacted the work you are doing? 

It’s hard to believe that there was a time that our company, PlaySpark, existed before Rudy – but it did! We have always placed our focus on disabled children, long before Rudy was here to guide us. But having now been in the role of a speech pathologist and a parent of a disabled child with significant needs, so much has changed. 

Rudy has opened my eyes to the full experience of what it means to be disabled in a world that was not built for you. He now deeply informs my perspective as a therapist and as an advocate. 

What words of advice do you have for people and families who are new to tube-feeding? 

You do not have to learn it all today. You don’t have to feel comfortable with this on day one. You are allowed to take your time and learn how tube-feeding works within your routine and your life. 

Let go of the pressure to be a master and give yourself grace as you figure this out. If today feels hard, trust that it will get better and you will figure out the solution to the problem, whatever it may be. You can do this – and you aren’t alone.