Happy World Down Syndrome Day!
March 21, 2024
Unlike becoming a parent of neurotypical children, parents of children with Down syndrome must consider the future in sometimes helpful and unnecessary ways. And that starts at birth. The fact remains that we must work a little harder to secure a place in this world for our children who will grow into adults. We search out meaningful ways for them to engage in their communities, keep them eligible for essential supportive and life-sustaining benefits, and prepare them to eventually live someplace without us. I’ve used this blog to document certain important milestones, and lessons learned over the years. We’ve enjoyed a relatively uneventful and typical number of years going to school, getting to activities, and playing with friends. Hence, blogging just slipped by the wayside. Honestly, it’s been lovely having the quiet and fun years (dare I say that) of four kids in their teenage years just enjoying life.
Although Mrazian by superfan standards, I certainly make room for other artists and it was about the time of Bernie’s final and triumphant discharge of her first year in September of 2008 that Taylor Swift released “Love Story.” I think I listened to that song every single day driving Izzy to kindergarten. It was my only break in the day to be alone and on the ride back home with no one else around, singing out those lyrics made me feel on top of the world. Just as Taylor flipped the script on the tale of Romeo and Juliet, Bernie's story flipped into an unlikely tale of survival and connection. Parenting dished out one heck of a year and finally getting home after 220 days in the hospital was an incredibly overwhelming feeling of love and connection after so much uncertainty and extreme stress. After posting about Congenital Heart Defect Awareness week around Valentine's Day, people would comment that “Bernie’s love story is one of my favorite love stories.” Mine too. If you are new to Bernie’s story, you can find that chapter here. And if you want the Friday the 13th Prequel to our story, check that out here.
While I flooded the house with the music of Jason Mraz, my children wanted to listen to Taylor Swift. Her career has spanned the entirety of their childhood. The “Big Three” were growing up finding and making their own music. Check out the episode below I call “Busking with Beezer” where Izzy was apparently raising money for Down syndrome with her fake guitar at the end of the driveway. Izzy is our family's original Swiftie.
Here we are in the next transition into adulthood. The sisters are finding their way to and through college. (Sidebar announcement: Sadie was recently admitted to the University of Michigan and will attend the Stamp’s School of Art and Design, and eventually transfer into the School of Architecture-Go Blue!). The older sisters are living on their own, forging new relationships, and deciding on career paths. At 16 years old, we’ve reached an important point in time where we are asked by everyone involved in Bernie’s educational experience and medical care to consider how we will choose to engage in a totally adult world with Bernie. And so much of that depends on who Bernie is, what she wants in life, and what gives her satisfaction and joy. The answers unfortunately are not easy or clear at this point in time. Career paths and options for group and/or independent living for people with Down Syndrome are limited.
In short, a few words we’ve learned over the last few months that resonate with her are Culver’s and Taylor Swift. Not necessarily the endgame or final thoughts on the matter, but certainly it’s becoming a process to tap this information from a sweet and sometimes grumpy young lady (total teenager through and through), who chooses her words very carefully and would rather sit quietly in her bedroom and listen to music. She knows most every pop artist, the titles of the songs, and most every lyric. If you can catch her singing in an animated way, consider it a treat!
Bedrooms are tentative spaces. Soon after our return home in September of 2008, Bernie was able to move into the bedroom we could truly call hers. Trust me I thought about what would become of this room if we weren’t able to bring her home that year. Surely it was quite likely that over 20 episodes of cardiac arrest made that a realistic possibility in that first year. We could now fill her room with all the things that defined her and give her a space to rest, explore, feel love, and become a little girl.
Now at sixteen, that little girl bedroom is something Bernie has outgrown. She’s always loved the color pink and making that the color of her walls has been the plan for as long as I can remember.
So a couple of other things that are important to the story happened last fall. First of all, I enrolled Bernie in Open Spot Theater, are unique opportunity for people with different abilities to have a positive experience on the stage both individually and with the larger group. Getting up in front of people has always been a challenge for Bernie. If you really need the backstory on this, you can watch her first time on stage here. Signing her up for this class was something of a risky move. The last session was all about each student getting on stage to perform something that meant something to them. It would take a combination of very special forces to get Bernie up there.
Not long after that first class, some of the other parents and I decided to take our daughters to the Taylor Swift movie when it opened. My daughter Sadie spent her last day of high school traveling to New Jersey to see one of the Eras Tour shows and we knew this was fascinating to Bernie. Attending the film of the concert was a game changer. Bernie was laser focused for three hours and absorbed every second of the performance.
As we drove home, Bernie requested to hear "Willow." It was right about that time she made the decision about what she would perform for her talent show for Open Spot Theater. After some weeks of work, the purchase of a remote control light up beach ball, and lots of direct encouragement, you can see for yourself how seeing this movie and having this music motivated Bernie (the first 20 seconds are really all you need-for real).
And it didn't stop there! Taylor Swift's music not only inspired the above performance, and it also became a tool to get her moving. With her phone also came an old Fitbit with her new step goal to complete 7,000 steps in a day. The movie inspired Bernie to try some of her own new, rad dance moves in a space of her choosing around the house to get some exercise. No small task for someone built for comfort like the Bern!
It was about that time that a friend of mine posted on Facebook that she had four tickets to a Taylor Swift concert in Indianapolis November 2 this fall. That would be right after Bernie's birthday in October! After scheming and thinking and dreaming a little, my sister said she would meet us there and buy two of the tickets to make this idea of taking Bernie to a real Taylor Swift concert a reality. We were getting fired up! I told her I would take them. She didn't get back to me right away so after a few days I decided to text her. I was ready to make this plan happen!
Her quick text reply made my heart sink. She said that wasn't her and her Facebook account was hacked and under NO circumstance should I send money to her through Facebook. Bernie never found out about the birthday plan, but in this few months since the film, I've proclaimed my own Swiftie status and was quite enamored with the idea of going to the show. And that likelihood just went down the toilet. Thank goodness I never sent the money. It made me realize we needed a new way to engage with Taylor Swift.
A leaking shower above Bernie's room forced a premature dive into renovating Bernie's room in January. Drywall and pink paint hit the wall and the talk of doing a Taylor Swift inspired bedroom became the idea we wanted to pursue. After all, the colors in the movie poster certainly aligned with Bernie's request for pink walls. A trip to Ikea for some new accessories, a silver "Taylor's Heart" hand heart statue, and some sparkle curtains were instant hits.
But what to do for the wall art? Our family has never been hip to pedestrian wall hangings for our own home. The items we hang have very personal significance and are most often prints from places we've traveled, photos and art of/by people we love, or creations we've put time and thought into making ourselves. Maybe we would paint something in the color palate of the movie poster? Maybe it was paper cutting or some artistic rendition of the original covers?
This is the first year that we are unable to take a trip all together for spring break. A few reasons. A major furnace repair, three kids in college, ridiculous airfare prices, and the tiresome drive to Florida to name a few. Yet college kids come home sooner. My next idea was taking shape: What if our family's original Swiftie (who happens to physically resemble her to boot) would pose with her sister for some new "interactions with Taylor Swift" and we could remake Taylor's album covers with our own twist? When presented with the idea, Izzy was all in!
And so it goes. It's just what we had to do. It was a lot of fun. We found our own way to engage with Taylor Swift and it just so happens to be two of my four great loves doing the smiling and interacting-the greatest gift for a parent who loves photos. And in true Taylor Swift style, there are some advocacy "Easter eggs" hidden in each one with some nods to other favorite memories and people that you can catch at the bottom of this blog entry.
If you “are what you listen to“ I’d love to take this opportunity to say thank you to Taylor Swift for a few things. Thank you for the gift of song that gets our kids moving and feeling, trying new things, taking reasonable risks, and having fun. Thank you for giving girls permission to love their mothers especially in those awkward years when parents can be perceived as less than cool. Bernie sat in the car the other day and showed me "Taylor's Heart" as she held her hands up for the first time against her chest to show me this signature move. It was awesome. And that's something for which I am truly grateful. Taylor's heart is truly present in everything she does and she is an amazing person who has inspired a generation of strong women and people thoughtful of being on the right side of history. And she is an incredible songwriter! And a thank you to Taylor's parents, Andrea and Scott. As March is also Parenting Awareness Month, it's only appropriate to honor their work as well in all of this. So happy to have Taylor's likeness and energy alive in my kids. Can't wait to see where it takes us next.
Thanks for following along and reimagining the possibilities, relationships, and interactions for people with Down syndrome in this world!
Long live the walls we crashed through
I had the time of my life with you
Long, long live the walls we crashed through
How the kingdom lights shined just for me and you
And I was screaming, "Long live all the magic we made"
And bring on all the pretenders, I'm not afraid
Singing long live all the mountains we moved
I had the time of my life fighting dragons with you
And long, long live the look on your face
And bring on all the pretenders
One day, we will be remembered
-an excerpt from "Long Live", Taylor Swift
Keep scrolling for the Easter eggs/ advocacy messages explained!
Here's the new Taylor Swift Inspired bedroom!
