If it is at all possible, I want you to look in the mirror. See that person staring back?

Its the same person who was there just before your child was diagnosed. In six months you’ll look in the mirror again and know that a better version of yourself is there. One who has the capacity to learn and transition. One who used to think that their years of watching medical dramas on television was enough to understand the medical system. One for whom acceptance is a given, not a choice.  One who has the ability to know when to advocate. One who knows that sometimes your kid just needs to be a kid. One who has learned endless acronyms for systems and processes you won’t have a chance to fully understand because before you do you’ll already be on to the next stage.

I want to say you’re lucky and some days it will feel that way, as you celebrate even the smallest of accomplishments or milestones. But the truth is some days are frustrating and awful and scary. Its okay to wallow and those now and again, but if I could impart just one piece of wisdom (and not advice because goodness knows people in your life are doling that out left and right) it would be to truly appreciate the little things in your child’s life that might otherwise go unnoticed. For example, my son is non-verbal but he has the absolute most contagious laughter that I might not be as keenly aware of if it were interspersed with language.

And same for every smile, every hug. Every. Single Day. 

And always remember, you’re still there. But better.

Susan