Sibling Revelry

January and February in Arkansas are hard on anyone who has to go outside. These months are especially hard when you have little kids who want to go outside. The sky is gray. The river is gray. The cliffs, mountains, trees and buildings taller than three stories are all gray because of the fog that…

Matters of the Heart

February is celebrated as American Heart Month in an effort to raise awareness about heart health and the prevention of heart disease. Kids with special needs are often at an increased risk of heart conditions. Down (Trisomy 21), DiGeorge (22q11.2 deletion), Turner (Monosomy X), Patau (Trisomy 13), Edwards (Trisomy 18), Alagille and other syndromes carry…

“I don’t know how you do it.”

Resilient is a word that has been used to describe me lately. Maybe it was used before now and I wasn’t paying attention, but I am now hearing it a lot.   I have heard it so many times, in fact, that I decided to look it up in the dictionary to make sure I…

Extraordinary Estie: An Ordinary Day in a Special Life

Estie Johnson says these words, and also lives by them: Be your best self and live your life to the fullest because you never know what you could achieve. The sky is the limit!  A recent high school graduate, Johnson worked as an advocate for people with disabilities before the pandemic.   “I have a muscle disease…

The Dirtiest Car in the World

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…