Sheridan Road visits with North Shore resident Shanda Kaiser, to hear her story of hope after her third child was born with Down syndrome.
When did you find out you were having a child with Down syndrome?
We didn’t find out that Taylor had Down syndrome until she was born. That day is still so clear in my mind. She struggled to breathe so my husband Brett stayed close to her as the nurse worked. He said, ‘She looks like she has Down syndrome.’ I immediately began to feel my heart in my throat. I remember looking up at the doctor with tears streaming down my face. I loved her the minute they put her in my arms but I was terrified. My first job after graduating with my masters in social work was helping families in crisis and yet I still didn’t feel prepared for that moment. I felt a whirlwind of emotions. Will she suffer? How will this affect my other children? My husband remained steady. He said ‘It’s going to be ok, she just needs love.’
What is Down syndrome?
Down syndrome is a condition in which a child is born with an extra copy of their 21st chromosome. This causes physical and developmental delays as well as medical challenges.
Did your daughter experience any medical issues?
Yes, to be honest her medical issues consumed our lives for a while. We found ourselves at the Leukemia clinic at Lurie Children’s Hospital when she was only four days old. This experience was one of many life-changing moments since having Taylor. Being at this hospital amongst children fighting for their lives was like nothing I can describe. Taylor continues to deal with challenges but we now have perspective. We feel blessed because we know there are others dealing with so much more than anything we’ve had to go through.
How did you get through those years?
It wasn’t always easy. You find strength in other people. We had family and friends who would drop everything to bring a meal or come in the middle of the night when Taylor had to go to the hospital. Sometimes it was a stranger that made the difference. Brett remembers a day when he was feeling down and a stranger at the supermarket smiled and said, ‘She’s so beautiful.’ He needed to know she would be accepted.
Does it help knowing others that have children with Down syndrome?
Absolutely, I’ve met the most amazing people because of Taylor. Many of my mentors and closest friends have children with special needs. The thing I wanted the most when she was born was to connect with someone that understood what I was going through.
What’s your message?
So much good can come out of the challenges we face. Taylor is a gift to us. She’s taught us what’s important. My other kids see the world differently because of Taylor, yet they don’t see Taylor as being different. My daughter Brooke says ‘She’s just like any other kid.’ They don’t limit her. She sometimes needs help but she can do whatever she puts her mind too.
I’ve joined a group of parents that are working to open a GiGi’s Playhouse in Deerfield. GiGi’s Playhouse is an Achievement Center for people with Down syndrome. It’s a place where families don’t have to feel alone after receiving the news their child has Down syndrome. It’s a place where families have access to the tools they need to succeed. Children with Down syndrome need regular therapies, tutoring, and more. They can receive many of these services for free at GiGi’s Playhouse. GiGi’s Playhouse has helped change the way the world views a person with Down syndrome. Having a GiGi’s Playhouse nearby would not only help Taylor and so many others with Down syndrome in Lake County but it would be a great place for the community.
What do you need to open?
GiGi’s Playhouse is a nonprofit organization funded solely by donations. To be blunt, we need charitable donations and sponsors. Once open, we will welcome volunteers to assist with tutoring, interacting with the children, administrative tasks, events, and more.