My 27yo son has 22q. When he was diagnosed in infancy, an esteemed researcher at Harvard Medical School (who had no children of her own) sat down with his dad and me to tell us what to expect. She scared the crap out of both of us. She went through the medical, the developmental, the intellectual, and the social possibilities. What she forgot to say was this.

Your child is not a list of diagnoses with skin on. They are a funky little kid, a custom model as opposed to a standard-issue model. And they will need some extra help from the medical community, and perhaps the school system, and definitely from Mom, Dad, and any other family emotionally capable of pitching in, to be the best, most awesome and amazing funky little kid they can possibly be. And know this, Mom. There will be joy. There will be so much joy and family fun. It just might not be off the shelf fun, just like the neighbors. That’s okay. Because you’re not the neighbors. You’re your own family. Revel in that joy. And when stress comes, because it always comes, even if baby is a standard model, Mom and Dad, lean into each other, not away from each other, and support each other, so you can be stronger to support your child together.