I received a private message a few months ago from a complete stranger. Her message was warm, kind, and sincere. She herself has a special needs sister and our experiences have touched her and she felt compelled to reach out. I can’t tell you how wonderful it was to gain some insight from a sibling. A few things she wrote resonated with me and I think about her words daily. “Amazing children are on the sidelines.” We do know this. It wasn’t just our life that changed when we received their little brother’s diagnosis, theirs did too. The other day I realized just how amazing our (almost) five year old…

As a mom with a complex kid it’s easy to get caught up in daily chores and things on my to-do list. There never seems to be enough time in the day. Ever. The list keeps growing and things get forgotten. Our little guy has a day filled with his own tasks. As soon as he wakes he needs to take on a day filled with therapy and activities I have planned for him. Wake up, meds, water bolus, sit in high chair and play with food while having breakfast via g tube, get ready for therapy, after therapy more tastes of food while feeding him, stander for an hour…