Zoe Turning 17, an update by Shannin Strom (Zoe’s Mom)
Zoe will be 17 in August. It’s hard to believe it has been almost 14 years since she graduated from Holly Ridge and transferred to her local elementary school for early intervention preschool (early supports preschool). She had grown so much at Holly Ridge and reached so many huge milestones, like walking and eating orally, but had so many more to go.
I will never forget her walking into her preschool on the first day in 2011. She was still pretty much nonverbal, other than a few sounds only her dad and I understood, and still incredibly fragile health-wise, on a medication pump worn in a backpack and on oxygen. She was surrounded by 3–6-year-olds who were so much bigger, louder, and stronger than she was. It was quite intimidating for all of us, but she walked bravely in with her medical pump, oxygen, and cute little smile, and participated right off the bat.
Over the years at public school, she gradually learned to talk, to read, to write, do basic math, to swing on jungle gyms, to participate in field day, to make beautiful ceramic pieces, take part in leadership class, and all around, become a pretty typical teen.
Zoe still has significant developmental delays when it comes to scholastics. She participates in the Integrated Learning Center (ILC) at Bainbridge High School, where she just finished her freshman year. She also participates in a few peer-grade classes such as Health, Biology, and Ceramics with the help of a para. While she reads and comprehends at more of a 6th-grade level, she continues to grow all those skills every year and continues to push herself and make gains every year.
She loves Taylor Swift and dancing and can frequently be found doing both those things with vigor. She loves her pets and is a great friend to them. She loves her family, particularly her younger cousins. She is an amazing traveler and adventurer and loves to always learn. We have been to France, Scotland, 15 National Parks, multiple US states, and on other adventures, and she loves every minute of it. She has flown by herself with her teen cousin and loves to navigate new places on her own and figure out how to do things. The next adventure she and I are planning is a trip to Amsterdam and Germany, as she is very interested in all things Anne Frank, and so we are going to do a deep dive into that. When faced with things she physically can’t do like climb a mountain at a National Park, the adults with her take turns piggybacking her up, oxygen concentrator and all. In fact, while at Crater Lake National Park, she walked all the way down to the lake, on oxygen by herself, and my sister and I hiked her out. You’d be surprised what one can do while on 02 and with a determined streak.
She loves to bake and cook and is really quite good at it. Favorite things to make are crepes, cupcakes, sliders with grilled onions, and pizzas.
She continues to be the kid who brings joy to all who meet her. While shy with her peers at first, she warms up eventually and loves to have fun with them doing things like bowling or games. She continues to be more comfortable around adults and interacts really well one-on-one. In a first for her, over the course of the past couple of years, she has made a best friend at school. It brings me immense joy to see her do typical teen things like sleepovers, silly games, random texts back and forth, and to just see her friendship reciprocated. Over the years, this has been one of the hardest things to watch as a parent, to see your child with no true school friends who understand her and love her for her, so to now have her know what that is, is an absolute blessing for both of us.
Medically, she is holding stable. She continues to live with advanced Pulmonary Hypertension, Chronic heart disease, and Scoliosis. She has learned how to self-regulate how active she can be and when she needs to rest. While she in no way has the stamina of a typical teen, she can walk up to a mile at a time and more than that if going down gradually, or in bits. She can dance for song after song when she wants to. While the COVID pandemic was a very scary time for her, and her dad, and me, due to her fragile lungs and heart, she weathered it well health-wise. She was on lockdown for about a year before she was able to be around anyone other than family. Online school was really tough for her as Zoom is not an ideal learning situation for her, but she seems to have rallied well and caught back up, and in fact, improved.
When you have a medically fragile child like Zoe, you often forget the many, many steps in the journey, as it is just a non-stop roller coaster. You get used to living at this intense pace and it all becomes routine or just a new normal. To stop, pause, and reflect on where she has been and how far she has come is a blessing. Last summer she and I traveled down to Portland to visit the NICU where she was born for a reunion and to see some of our favorite nurses and doctors from her first 3 months of life. I was not prepared for how hard that hit me, the feelings of gratitude, trauma, fear, and joy, are all rolled into her one big beautiful life. For the reasons mentioned above, I sometimes momentarily forget how resilient she is, what she has been through, what she has overcome and learned, and how she never gives up, but I never forget the people who got her/ us there. The therapists, nurses, doctors, teachers, paras, family, friends, and strangers. It truly is a magical village.
If you asked Zoe today, she would probably tell you she is living her best life. She is supported and loved by so many people. She feels pretty healthy, she is almost 17!!! I still get overwhelmed thinking about that… my child who was never guaranteed a day of life being almost 17.
If you asked her today, she would tell you that she is going to go to Knox College (where I went to undergrad) and bring all her American Girl books to read there. If you asked her today, she would tell you she wants to be a doctor and a nurse and work at Starbucks. If you asked her today, she would say her favorite singers are Taylor Swift and maybe all 80s songs or the Grease soundtrack. If you asked her today what she loves to do with me, she would say she loves to snuggle and watch Buffy, If you asked her what she loves to do with her dad, she would say camp and watch silly videos on YouTube. If you asked anyone who knows her what they love about her, they would say absolutely everything, but especially the joy she brings to every day and they would be right. She is never one to feel sorry for herself or even be aware of her disabilities. It is part of her absolute magic- she is just Zoe, a force of nature who continues to beat all the odds stacked against her, is living her best life, and brings joy to all she meets.
—-Shannin Strom, Zoe’s mom.
Watch the original Zoe’s Story from 2011, on our YouTube Channel: https://youtu.be/peb_tMUksYU?si=mzUSU_5Hep9Vh-5-