‘A different set of hopes and dreams’
Alexander Podell lies on his tummy, his wispy blond hair standing up like a punk rocker’s, and strikes at the keys on his Little Tikes piano.
He beams as the toy responds: plink-plink-plink.
Alex, nearly a year old, rotates through his favorite toys, but “everything’s music,” his mom, Tami Gourlay, said.
He especially likes the toys that light up and play a snappy tune when he hits a button.
Little Alex has made huge developmental leaps since he was born seven weeks premature and with an unforeseen diagnosis of Down syndrome—a chromosomal abnormality that results in developmental challenges.
His parents had barely gotten over their astonishment at the pregnancy when Alex made his early appearance last September at Spectrum Health Butterworth Hospital. Tami learned years before, at age 26, she was unlikely to ever conceive. The older she got, the less likely a pregnancy became.
Now here she was, expecting for the first time at age 38. She and her partner, Scott, started preparing a nursery while their friends and family planned baby showers.
If they were unprepared for the baby’s early arrival, they were even less prepared for the news of his diagnosis, which they heard in the Neonatal Intensive Care Unit at Spectrum Health Helen DeVos Children’s Hospital, a few hours after his birth.
“It was quite a shock and, at that time, quite devastating,” Tami said. “All those hopes kind of disappeared, you know?”
In their place came uncertainty, for both the long term and the immediate future.
As it turned out, the short-term worries quickly melted away. Though the doctors were at first concerned about Alex’s heart and lungs, these problems resolved and he went home from the hospital earlier than expected.
They just learned to love their child for who they are (and now) their child has become the joy of their life.
Still, he had a feeding tube for nutrition. With the help of a feeding therapist from Visiting Nurse Association of Spectrum Health At Home, Tami—who herself works as an occupational therapist for adults—worked with Alex on exercises to strengthen his cheeks. Soon he was taking all of his feedings by mouth.
“They were actually able to take the tube out before they even came to see me in clinic, so he was doing really, really well when I first saw him.”
Strengths and challenges
Dr. Behrmann, who focuses on kids with disabilities and special needs, spent a lot of time talking with Alex’s parents about where they may see developmental strengths and challenges for him as a child with Down syndrome.
One of the strengths, she said, may be a heightened ability to read facial expressions and recognize emotions.
“There’s some really fascinating studies that are coming out, looking at that ability in infants with Down syndrome,” she said. “So we talked about doing a lot of face-to-face time with Alex and making faces at him, being silly with him, making noises with him and just kind of capitalizing on that ability.”
Alex’s parents took Dr. Behrmann’s counsel to heart.
They poured themselves into his care and therapy, according to Karen Cushway, a Visiting Nurse Association physical therapy assistant who worked with Alex for about nine months on strengthening his muscle tone and developing his motor skills.
“They have done such a beautiful job with him. They work with him every day, they take him out, and Alex is such a happy kid,” Cushway said. “These guys are just amazing parents.”
Dr. Behrmann echoes Cushway’s account.
“This family is particularly fun to see in clinic because they are so positive about Alex, they’re so optimistic, they celebrate every single little milestone that they see and make,” she said.
They take a ton of joy in Alex, the doctor said, calling him an “incredibly socially engaging baby” with a fantastic smile.
All of this is true—yet behind the scenes, it was a struggle. For the first few months, Tami said, she let Down syndrome define Alex.
“I was stuck on the diagnosis, not just seeing him as a baby and enjoying that time with him.”
Stressed and not sleeping well, she kept pushing herself—and Alex—to do his therapies. Soon her emotional health began to suffer.
“I was depressed, I was anxious, and I felt so overwhelmed,” she said.
So she began reaching out. She told her physician about her concerns. She began seeing a counselor. She talked with her friends and got in touch with other moms through a Down syndrome support group on Facebook.
“They would send me messages and reassurance, and that was probably one of the most helpful things for me,” Tami said.
“They would tell me about how they felt the same way in the beginning, that they had the same emotions … but then they just learned to love their child for who they are (and now) their child has become the joy of their life.”
And sure enough, the same thing happened with Alex. Watching him light up when she greets him each morning makes her day, Tami said.
“Seeing the smile on his face, it just melts my heart every time.”
She remembers conversations with Cushway that gave her new ways of thinking about Alex’s future.
“Karen was great. She’d say, ‘I see him as a soccer player someday, Tami. He’s got strong legs, he loves to kick. I see him as a soccer player.’ So it was nice to say, ‘You know what? Yeah, he could be a soccer player someday.’
“Stuff like that gives us a different set of hopes and dreams.”
Tami and Scott have learned a lot about life’s surprises in the past year and a half. In a way, they’re still adjusting to their new reality. But they’ve also embraced it, and they look forward to having Alex experience life right alongside them.
Just after his first birthday, Alex is making his first trip to Michigan’s Upper Peninsula, where the family will visit Scott’s older son, a freshman at Michigan Tech. The trip marks the start of new adventures for everyone.
Thanks to Alex, the couple’s perspective on life has changed completely, Tami said.
“It’s been one of the most challenging but rewarding experiences,” she said.
“You know, he’s come so far from the time that he was born, when I was a afraid—is he even breathing?—to now it’s like, ‘OK, let’s go play.’”
And Alex—“he taught us all of that.”