Today we’d like to introduce you to Joanne Taylor
Hi Joanne, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today?
Life changes when you have children. That moment you realize that you are responsible for another human being’s survival, well that’s intense. With Freddie’s diagnosis of cancer there was no way for me to fix it. It’s an utterly helpless feeling that forces you to let go of any sense of control as a parent. I couldn’t make him better with just my mom magic.
When Freddie was born, I had already been a mom for 9 years. Clementine was 9 and Olive was 5. Freddie was born June 14, 2016. He was actually due on the 24th but decided to break out early. Labor and delivery were a complete mess, and we came close to losing him. But he’s a fighter. Something he continues to prove over and over. He even has 3 copies of his 21st chromosome to prove it. Yes, we are part of “The Lucky Few”. Freddie was born with Down syndrome.
I started Team Freddie not too long after Freddie was diagnosed with cancer. B Cell Acute Lymphoblastic Leukemia (PHIL like) to be exact. Which was January 8, 2019, the day after my 40th birthday. I wanted an easier way to keep our family and friends updated throughout Freddie’s “expedition”. I felt more at ease calling it an expedition because one of the first things I remember seeing as we were rolled into the oncology floor, were nurses with t shirts that said, “fight like a kid”. I kept thinking “I don’t want him to have to fight. I don’t like these shirts.” And an expedition sounded harder than a journey or voyage but not quite like a fight. Of course, I know now just how hard his little body would have to fight and how hard the fight is still.
Even though treatment is over, and Freddie has been in remission for two years, he still gets blood work drawn every 3 months. He won’t be considered cured until he reaches 5 years in remission. He also takes long term steroids for adrenal insufficiency which he developed as a side effect from treatment. We also have to give him biweekly infusions in his thighs of subcutaneous IGg because his immune system was, for lack of a better explanation… depleted. He is an immunocompromised kiddo.
Another unexpected diagnosis that came in the middle of all of this, autism. Freddie has slowly been earning his letters. Yes, I joke because Freddie is not just these things. He is not just his diagnoses. Freddie is an 8-year-old boy who loves the original Toy Story, Moana, Coco, and the Trolls movies. He loves dancing to Imagine Dragons and rocking out to Rancid. He loves his rapper snappers and can most likely out spin anyone. And he gives the BEST snuggles.
My story has evolved because of all of these. I have evolved. I have been pushed to the point of realizing that the world keeps going even though yours may have come to a complete standstill. And that’s ok. The hard part is finding people who understand what you are going through. It’s not easy but I am figuring it out. I hope that I can be there for my kids in the best ways possible and from there they can help pass that on.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
No, it was not a smooth road. The day we found out Freddie had cancer, he was admitted to the hospital, and we didn’t leave for 56 days. He had multiple surgeries, lots of chemo, he stopped walking, he stopped eating and became depressed. He was two and a half years old. During his first year of treatment his spent around 150 days in the hospital.
He was hospitalized with mucositis for weeks at a time and had to be on morphine for the pain……another side effect from the chemo. We celebrated family birthdays in the hospital and holidays apart. Freddie missed starting school with his peers and never really got to experience being a little kid. His older siblings had to wake up some nights at 2am because we had to rush Freddie to the ER with a fever, and dad was on shift at the fire station. Olive once said that every time that happened, she was afraid that Freddie was going to die. No books on parenthood prepare you for that. No class tells us how to handle these situations, especially not while we are trying to control our own fears. It’s a lot to work through.
Can you tell our readers more about what you do and what you think sets you apart from others?
I am an artist/maker. I have tried to keep up with my own art as an outlet during his treatment, the pandemic, and everything else. But something I never thought about until I was in this position, was the toll on my mental health. When Freddie was first diagnosed with cancer, I asked what resources there were. Unfortunately, there isn’t really much for parents. There definitely isn’t much for parents who have a child with a disability. And there was nothing for a small, scared child who was using mainly sign language to communicate at the time.
Now that Freddie is almost 3 years in remission, I have been trying to figure out how to help other parents in these situations. I recently became a certified Peer Support Specialist. And I have been studying trauma and the affect it has on our bodies. It’s taken me a few years of working through my own fears and coming to terms with what has become our “new normal”.
I volunteer with our local Down syndrome association. The Down syndrome association of The Lowcountry.
I also volunteer with the Down syndrome Diagnosis Network. I help moms who have a child, with DS, who has been newly diagnosed with cancer.
I am working on how I can be more of an advocate for my own mental health. For my family’s mental health, and for anyone else who struggles in finding those “who just get it”.
September is Childhood Cancer Awareness Month!
October is Down syndrome awareness Month!
Let’s talk about our city – what do you love? What do you not love?
The food and the views are amazing! I love the neighborhood markets and have enjoyed being a part of the Town market on James Island in the past.
Everyone we have met has been so nice and we have some awesome neighbors. We moved here in 2016, just 2 weeks before Freddie was born. So, our time to really explore the area has been filled with a lot of life events. But our community came together for Freddies third birthday. It became such a bittersweet celebration as he received cards and gifts from around the world. A really cool friend of ours let the world know that Freddie would be celebrating his third birthday in the hospital for his cancer treatment and the world responded. He received around 13,000 birthday cards and lots of packages!
One of my biggest struggles though has been his education. Getting access to necessary supports isn’t easy.
Contact Info:
- Instagram: https://www.instagram.com/love.is.all.sizes
- Facebook: https://www.facebook.com/teamreadyfreddiego
- Other: https://www.etsy.com/shop/IckyDolls
