Child Neurology Foundation's Rising Tides Grant

In June The Cute Syndrome Foundation received a Rising Tides Grant from Child Neurology Foundation to lift a social and emotional support program off the ground. This program has included zoom yoga and family martial arts classes, food and drink discussion group, a book club and access to meal kits, mindfulness app subscriptions, and gift cards for yoga mats, books, etc. We knew this programming would be meaningful. However, as we dove into it, we began to realize just how much our community needed this—to feel supported, engaged, and connected. Also, simply, to have a bit of fun in the midst of everything. 

We are so grateful to Child Neurology Foundation for not only making this program possible, but doing so in a way that allowed us to quickly and flexibly respond to our community’s needs in real time. Here are two examples of how we were able to do use the funding, and what that gave the community.

Book Club

​The book club has been one of our most popular groups. Most of us in the group had never been in a book club, because the times in our life when our friends were doing such things, we were in and out of hospitals, learning about feeding tubes, and trying to keep our children alive. We are a group of people who were pretty sure book clubs weren’t for us. 

However, this book club is, absolutely for us. 

And, thanks to the CNF funding, we’ve been able to make participation as easy as possible by providing gift cards to the book club members for the books we are reading, at least through October. 

Being in these book club conversations has been really touching. We all love that we can join together to do something “normal” where we make the rules. There is no pressure. Some people get behind; it doesn’t matter. We talk about what we want to talk about. And we do all of this, even as one new mom has to step into the background for a minute to help her child who is desating, or another mom administers medications via feeding tube without missing a beat, or another mom who rarely sleeps shares that she feels guilty for the only break she’s taking that day. 

Also, a story is never just a story—stories are also a means to better understand the world, other people, and yourself. So, we talk not just about the book we are reading, but about what it makes us think about. We have participants in the group from among our longest standing community members as well as some of our newest community members—so we are able to connect across experiences, offer advice, share information. While we are nearing the end of our grant funding, we have committed to continuing to meet as a club.

I have been working with and organizing this community for years—leading activities, talking with parents. And this group has consistently had some of the most real, compassionate, and helpful conversations of which I’ve ever been a part.  I find myself watching the faces of moms who literally have been through the most unimaginable things with their children—medivac flights, DNRs, regularly resuscitating their own children—just being women, together, supporting each other, without judgement. And it was one of the most powerful experiences I’ve ever had within this community or any other. It was as if we all needed to let ourselves just be moms with a beautiful book, in order to understand that we could open up in this way. 

​Joining this book club not only gives me a reason to take time for myself, but also an opportunity to be with others who are in the same situation and allows us to focus on something other than our daily lives.

Food and Drink Club and Hello Fresh Meal Kits

We did the hello fresh meal kits, no pictures because we made them and ate them right away! So delicious and such a nice change from our usual routine 😊

​We have offered two food-related programs as part of the CNF Rising Tides Grant. 

The first was to provide access to meal kits for families, so that they could just take a night off from meal planning and have fun prepping easy, interesting meals as a family. At first it seemed like the families were hesitant to sign up for the meal kits—it turned out that some didn’t want to take away access to people who might need it more. The team found this so touching—that as we were trying to take care of the community, they were trying to look out for each other. Others didn’t participate at first because they couldn’t believe that it was a simple as just saying yes. And then, it was a great joy to see those same families sharing photos of their food, explaining what the made, and what it meant to them. This struck us, as we know how important our perception of social support is to helping protect individuals from risks of PTSD, which is a risk within caregiver communities like ours. Showing that TCSF and CNF are here to offer care is part of demonstrating social support networks…and it can make a meal feel like so much more than just a meal, but rather a symbol that we are all in this together. 

Our second program was a food and drink discussion group that met weekly to share recipes, talk about our favorite drinks, and do cooking demonstrations. We also spent a good amount of time just talking, laughing, and telling stories. One of our most entertaining sessions was with a mother in Italy, Cinzia, who demonstrated how to make Spaghetti all'amatriciana. We all had so much fun watching her cook, learning about bucatini pasta, which is spaghetti with a hole in it, which, according to Cinzia, exists in order to allow the for the sensation of “wind” in your mouth as you eat. 

For me the Food and drink event was all about sitting back and unwinding and spending time with everyone. Most important was the laughter. Right now our world seems to have lost its humor so for me the laughter helped to ease my stress!