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pioneer parents in indiana
ANGELA TOUSEULL Alex and family on the Buddy Walk
By Angela Arlington
Christmas
Family bowling night
Angela Touseull’s oldest child, Alex, was born at 12:50 am, just a few days before her due date. She remembers how it was a picture-perfect pregnancy with no signs of anything unusual. Alex entered the world with a head full of beautiful black hair and weighed 7 lbs, 6 oz. She and her husband, Darren, were beyond excited to be first-time parents.
Within a week of coming home, Angela received a call from Candy Zickler, the nurse practitioner at the Riley Hospital Down Syndrome Clinic. “She set up appointments for Alex with several specialists, suggested books we should read, hooked us up with the local Down syndrome parent group, and contacted First Steps so we could get early intervention services started. We were lost and had no direction until that phone call. She gave us so much hope.”
“No one in our family had ever had a baby with special needs, so it didn’t even enter our minds that we would have anything other than the ‘Gerber’ baby,” Angela said. “I loved being pregnant and seriously relished every bit of those nine months. When Alex was born, and I first saw her, I was worried, but the nurses assured me she was fine. It wasn’t until the next morning when our pediatrician broke the news that we began to learn she might have Down syndrome. Over the next few days, my husband and I were in and out of denial. We pulled out our old baby pictures and assured each other she looked just like us when we were babies.”
When Alex was participating in a program called “Lekotek” at Easterseals Crossroads, Angela met Mariea Best and her daughter Maddie. Maddie had Down syndrome and was a few months younger than Alex. Mariea started the Indiana Down Syndrome Foundation and invited Alex to be a model in the “Down Right Beautiful” calendar, which was a fundraiser to raise awareness of individuals with Down syndrome.
“As I look back at her newborn pictures today, it was obvious she had Down syndrome,” Angela added. “A genetic counselor eventually visited us at the hospital and confirmed the diagnosis. He also told us she was healthy and her heart looked good. At that time, we had no idea there could be additional medical concerns to consider. We were already so overwhelmed and learning she could have more complications besides just cognitive issues was a lot to take in. It felt like he dropped this bomb on us and then walked away. Our minds were filled with so many questions. How were we going to do this? We didn’t know how to be parents, let alone the parents of a child with special needs. We grieved for the future we thought was lost for Alex. Thoughts like whether she would go to college or even the prom consumed me. How would I go back to work? We were scared. We were crushed. We were lost. We were sad. We wallowed in self-pity for a few days.”
40 Special Needs Living • December 2021
“It was therapeutic for me to put my energy into something positive,” Angela recalled. “Mariea and I quickly became friends.” Shortly after the calendar was published, Alex was diagnosed with a germ cell tumor. Cancer. The family’s priorities changed immediately as Alex was admitted to Riley for surgery to get a central line. Chemotherapy started soon after. It was a dark and difficult time, but Alex came through it all with great resilience. As Alex healed and went into remission, Angela learned of a fundraising effort that the National Down Syndrome Society was organizing called The Buddy Walk. “I talked to Mary Delaney and a few other moms of children with Down syndrome that I had become close to and we decided to bring the walk to Indianapolis,” Angela said. “I remember sitting around my kitchen table with these amazing mothers as we began the planning. None of us really had any fundraising experience, and we certainly didn’t have a bank account to fund our efforts, but we had passion. Our first Buddy Walk was an overwhelming success, not only financially but more so in the connections that we saw parents making that day. I remember we had the Noblesville High School choir who came out to sing the National Anthem, and we served food to all participants. It was a huge undertaking, but at the conclusion of that day, we immediately decided this would be an annual event.”
