The word “defect” is a difficult word, especially when you are a parent. Medically speaking, birth defects are structural changes present at birth that can affect almost any part of the body. They can affect how the body works, looks, or both. Advancements in medicine and surgery have led to better survival rates, and thankfully… Continue reading What are Birth Defects?

The thing my son loves most is no longer making him happy. This past summer, my son Charlie fell off his horse. He has been riding horses since he was four to help with his cerebral palsy. He is nine now. This has never happened in all the years he has ridden. It was an… Continue reading Getting Back on the Horse

Last Spring while on a walk at a local farm to see the horses and climb through the haylofts and crawl over the farm equipment, we got caught in a flash rain storm. It rolled in while we were racing down the gravel road toward the distant parking lot. It was miles away. Or at… Continue reading The Vital Importance of Getting Messy

Raising an adolescent is hard. Really hard. Their moods change quickly – one minute they’re angry and raging, and the next, they are a pile of tears in your lap. They want independence and freedom and yet, they are afraid of it. They want you to tell them what to do, but they don’t want… Continue reading How do I Parent My Adolescent with Special Needs?

Our family has a saying whenever one of us is complaining about being slightly inconvenienced: we are a team. It’s so simple a metaphor for family drama that it’s almost embarrassing. But therein lies the Ted Lasso appeal—the simplest, most honest approach is often the best one. Think of your favorite soccer/football/basketball/baseball team. Or if… Continue reading Here’s How We Turned our Family into a Ted-Lasso Worthy Team

The Jeep had no windows. And no roof – well, a tarp, but that hardly counts. It stood so high off the ground that our guide with the deep sunburn and Australian accent had to fetch the step stool for my seven-year-old twins. I was beginning to regret the big Colorado adventure I had promised… Continue reading Colorado Brings Adventure for Boy with Cerebral Palsy

The room was loud, concert-level loud, which is what happens when you fill any space with  nine-year-olds. My eardrums thrummed and my heart skipped a beat before it began to syncopate with the slamming down of books and backpacks and excited shouts of kids. I handed over Charlie’s bag and lunch and I steered his… Continue reading Am I Too In Tune With My Child’s Emotions?

When we are faced with news or experience of loss, whether physical or perceived, we respond with shock and disbelief. We then experience all of the emotions that flood us while we are trying to accept a reality that we did not want. As parents, when our child or children are diagnosed with a medical… Continue reading Grieving the Loss of What You Thought Would Be

When I was a student in school, students with disabilities were placed in a separate class, they traveled together around the school building, and everyone knew who “they” were. Terms such as “retarded,” “stupid,” or handicapped” were used so often. As a I type these highly derogatory terms, my skin crawls.  Over the years, our… Continue reading Which Terminology Should I Use – Special Needs or Disabilities?

When my son Charlie was born with Beckwith-Wiedemann syndrome, a rare genetic disorder that resulted in an enlarged tongue, we spent months in the neonatal intensive care, working to discover a safe way to protect his airways so we could bring him home. The end result after twelve weeks of false starts was a tracheotomy.… Continue reading Your Trash Tells a Story. Here’s Mine.