Guilt

Heidi nailed it with her last post. Parenting a child with RS creates a situation filled with fear, guilt, anxiety and downright paranoia. All parents worry. We are pre-programmed to do so. Even the most laid back individual suddenly becomes a worry wort when their child takes its first breath. Compound this innate hardwiring with a special needs child and you have a recipe for disaster.

Throughout the past almost six years our lives have been filled with a myriad of ups and downs. We have our huge victories. First steps after years of PT. Climbing the stairs to the top of the slide with no help. Being able to climb into the van unassisted. But we also have our "moments". The times that we pray no one is looking. When she can't stop flapping or spinning in the store and no matter how hard I try I can't stifle the urge to tell her "STOP SPINNING AND FLAPPING!!!!" The times that she plants her elbow square in her baby brothers tummy and he squeals with pain. Although I know she can't control her lack of balance I can't help but remind her to "BE CAREFUL!!!"

It's not easy. We know that our children will fall, flap, spin, talk too loud, be inappropriate with people, lead with their head or elbow or boney knee. They will take too long to buckle their seat belt. They will spill food all over the floor at EVERY. SINGLE. MEAL. They will require numerous calls from their teacher, the school nurse and/or the principal. We know this. We are prepared for this. But no amount of preparation is going to make it easy.

Posted by Kristen Fescoe