Yesterday Ellie was acting weird at school, so I picked her up early and decided to keep her home today to watch her. At school, her teacher said she kept falling asleep throughout the morning and didn’t want to participate in anything. Typically a Mrs. Kravitz, this was a sign that she likely wasn’t feeling…
Bad Advice
Before he left for work, I made an egg for my husband Ben to eat for breakfast. It was just the two of us in the kitchen and no little ears were around to hear us talking. “I just don’t understand why you think that her learning will slow down or just stop one day,”…
Special Family: Secrets to School Success
Each afternoon when I pick up my daughter from school, I get a peek into a world that is all hers. Ellie, 2, was born with Down syndrome and just this summer she started walking, eating by mouth and wowing us with new words she speaks every day — all things she has worked toward…
Perfect v. Wonderful
I’ve been trying to think of some profound statement on which to end 2020, but all I have is this: We are still standing. (Well, sort of. Between the hours of 5:30 a.m. and 8 p.m. we are destroying, creating and just trying to keep each other from getting hurt, but at 8:02 p.m. we…
The Beat Goes On: An Update
This morning I sat in my daughter’s cardiologist’s office while he talked to me about what was wrong with her heart. My husband Ben joined us via Facetime and I held Ellie, who just wanted to hug. We were chest to chest, and I could feel her heart beating while the doctor pointed to the…
Implied Happiness
I read a quote online the other day from a woman who was giving parenting advice: Always smile when talking to your children so that they remember you that way. My husband put our daughter, Ellie, in the shower last night to get her clean. Every other time she takes a shower, we have to…
Extraordinary: A Typical Day in the Special Life of Kylie Purifoy
Outgoing and active Kylie Purifoy is always on the move. From working in the theater department at a local high school to volunteering with the dance and drama teams, she is no stranger to the spotlight. I met Kylie and her brother and talked to him about their relationship for the November issue of Little Rock…
Prenatal Testing and Down Syndrome
This piece in The Atlantic is long but worth the read. When I was pregnant with my first two children, I remember telling the doctor that I didn’t need the prenatal tests. I looked over and Ben and he agreed, saying, “It doesn’t matter. We will take care of the child no matter what.” When…
My Only Girl
“I am glad that Ellie is your only girl.” I hear that or a variation of that a lot. Honestly, I have thought it myself on occasion. The idea is that if Ellie had a sister, she would grow up trying to be like her. The fear behind it is that if her sister were…
Extraordinary: A Typical Day in the Special Life of Michael Joe Lanari
Eighteen-year-old Michael Joe is a self-taught drummer who plans to study music in college. Before COVID-19, Michael Joe was a DJ at a central Arkansas pizza restaurant. “We were at lunch one day and the owner came over to the table and he and Michael Joe just hit it off and were talking and he…
