We brought Will home in the middle of a pandemic. He was our 8th child, but in many ways we felt like first-time parents. Before he was a month old we learned he had a hole in his heart, reflux, and hearing loss. It was a lot. But somewhere in the midst of it all we decided to start Instagram and Twitter accounts and advocate. We wanted to share the beauty of Down syndrome. Sure, there were some hard things we were facing, but the beauty we’d already experienced in the journey far outweighed anything negative. The love we felt for this little boy was overwhelming. And the joy he brought us was equally overwhelming. It was like having a little piece of heaven right in our home. When he nestled into my arms, I could feel Jesus.
We started therapy with Will at about 4 weeks. It seemed odd because it was through Zoom (It was 2020...), but we stuck with it. I learned through those first interactions with our state's Early Intervention (EI) program that there was a lot we could do at home to help Will thrive. We needed a lot of extra equipment for Will at the beginning. He slept with a Tucker Sling to help his reflux. He needed a BAHA for hearing. He needed an Owlet to monitor his breathing and heart rate. None of it was in our budget, but somehow God provided. We started to feel some relief from the stress of navigating a medically complex little one. And that’s when Infantile Spasms kicked in.
At first we didn’t know what was happening. I knew in my heart something was wrong, but I didn’t know anything about Infantile Spasms. Several doctors ignored our concerns. Meanwhile we were fighting with our insurance company to be allowed to see the geneticist at our DS clinic. Finally, when Will was 8 months we saw her. I showed her the videos we had and she said, “Those are Infantile Spasms. You need an EEG.” She scheduled one the next day. It was February 23, 2021. February 24, 2021, I sat alone again (because my husband wasn’t allowed to accompany me) and I heard the neurologist confirm the diagnosis. He let me know just how grave this was: “You need to leave here and go straight to the pharmacy. Give him the first dose in the car. And do not miss a dose under any circumstances. This is very serious.”
I was a wreck. We’d had IG for a few months and I’d just sort of dipped my toe into the DS community. I threw out a prayer request for Will the next day because the steroid treatment hit him like a freight train with almost the first dose. Not even 24 hours later, I met a mom who had a son who was just finishing up treatment for IS. She gave me her cell phone number and told me to text or call her. And I did. It was then that I realized that not only are our loved ones with DS special, but the families in this community are just as special. It was one of our darkest hours with Will. We ended up in the hospital for a week and he was tube fed while his esophagus healed from the trauma the steroids caused. I will never forget that lifeline she threw me. And I wanted to pay it forward. So today I’m part of her IS group on IG, and we help moms in our community navigate this very unpredictable and rare diagnosis.
After IS, Will needed a lot of extra therapy. He had some regression – stopped rolling over and forgot how to eat/swallow. He was unable to drink from anything bigger than a level one nipple without choking. I was determined to help Will relearn the things he’d forgotten but quickly realized that all of the extra therapy was just too much. So I started asking a lot of questions of my EI therapists and watching videos about how to help him at home. I realized that there is so much we can do outside of therapy to help our kids reach their goals.
In the months that followed, we were gifted a gait trainer for Will. It was a Godsend for many reasons – one of which was that we were literally drowning in medical bills after many EEGs, hospital stays, heart surgery, lung biopsy, and more. We were also gifted quite a few therapy toys and tools for Will. All of them I believe made a huge difference in his progress. And that's where Team Iron Will was born.
We've received a lot of help, and it's made a difference for Will. And we have a strong desire to pay it forward. We started selling T-shirts and other Iron Will gear – using the proceeds to help our own EI therapists gift toys and equipment to families in the DS community. Things started to grow from there, and here we are – launching a nationwide effort to help families in the Down syndrome community. We believe every child with Down syndrome should have access to the tools and toys they need to live their best lives.