As we come to the end of February, a month when we celebrate matters of the heart, I (Melanie) wanted to take this opportunity to share something very near to our heart. In June 2018, I was interviewing a lawyer for some work I needed for Aging Gracefully. At the end of our meeting he took some time to tell me about a non-profit he was on the board for, Spirit of Discovery Park. He explained that Spirit of Discovery was going to be an amusement park for every BODY- a totally inclusive park. At face value, I think Spirit of Discovery Park sounds like a completely amazing venture and one that I could easily get behind, however, this man had no idea what I was doing that very week which made Spirit of Discovery Park a matter of the heart.
I have a goddaughter, Justice, who is three. We have known Justice’s mother, Lucia, since Lucia was 8. Lucia is a single mother who asked us to participate in the life of her daughter. My family loves these two girls so very much. Lucia is 27, but in her early 20's she was diagnosed with MS. Sadly, her MS has been very aggressive and she is now wheelchair bound. Unfortunately, MS has made life very difficult for Lucia and she hasn’t been able to be the active mom she wants to be. At times, Lucia will ask me to help her with things for Justice.
One of my favorite things to help with is Justice’s birthday parties. Who doesn’t love a birthday party? One year Lucia wanted a picnic in Forest Park and to go to the zoo for the party. Easy breezy right? Well, not really. We did not have way to transport her power-chair; which meant using her manual wheelchair making it really difficult to maneuver to the picnic location. Furthermore, the picnic site was in the sun which wore Lucia out quickly. We went into the zoo after the picnic and were thankful that the zoo was very accessible. As all 3 year old children want to do on their birthday, Justice wanted to ride the carousel and my heart sank. My heart sank because there was no way her precious mama could ride it with her. Living with disability is hard day in and day out, which is why I longed for Justice's birthday party to be a break from the brokenness.
When I was sitting across from my lawyer telling me about this park, my heart knew it was something that absolutely must happen for families like Lucia and Justice. When I think about my own family and friend group, I can think of several living with a disability. As a friend and family member, I have the privilege of walking with them through the ups and downs of life. In my inner circle, one of my best friends has a son with Down’s syndrome. Another has sensory issues. A family member has Angelman Syndrome. That doesn’t even include my clients and their limitations.
At Aging Gracefully, we spend a lot of time talking with families about writing their stories. We encourage families to move into the future with intention rather than just responding. We are always asking families what is really important to them. We try to take those desires and create a plan of care that incorporates those desires. We also work very hard to help families come together in the process of aging rather than fall apart.
When I read the vision of Spirit of Discovery Park, I knew they were all about helping people write intentional stories and helping families come together rather than fall apart. Here is their vision statement:
We’re building a fully accessible theme park where EVERY BODY can belong. Children and adults of all ages and abilities will enjoy every aspect of an inclusive park, from the instant they walk (or roll, or ride) in to the moment they walk (or roll, or ride) back out. They can do this because every aspect of the park is designed just for them.
When the team at Aging Gracefully talked about things we felt passionate about doing in 2019, supporting Spirit of Discovery Park was at the top of the list. We will be supporting Spirit of Discovery Park as a business. We will be sharing what they are doing and how you might support the park through our website and social media. We will be volunteering and telling those that we meet about this amazing park that we hope to see up and running in St. Louis soon!
When I asked Lucia if I might share her story, she cried and said, “Yes”. After a minute, she said, “Can you talk to the people at the park?” I said “Yes, why?” “Tell them I need to play in the water with my daughter.” And that is the story I will be helping Lucia write with Justice. Hopefully, one day soon we will riding rides and playing in the water with two of our favorites. You better believe my family will be in line the very first day. We want to encourage you to think about the ways you can go out into the world and help others write intentional stories and what ways you can help families come together rather than fall apart.
With a full heart,
Melanie
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