Letter from a Mom

My name is Heather and my son Aidan, 14, has a rare genetic disorder. What I want you to hear is that you’re not alone and you can do this and sometimes it’ll be hard as hell. Along the way we’ve dealt with medical procedures, school plans, medication management, accessibility issues and many other aspects of what I call Disability World. It can be overwhelming, frustrating, and confusing. The beginning of this journey can be full of grief that perhaps you don’t have time, energy or permission to address. This is not a moment you planned for. You are not crazy, you have not failed, and you are not alone. If you need to hear this from a stranger who’s been there, then hear it: I give IMG_3897you permission to grieve, even in the midst of celebration.

And there will be celebration. Milestones often become inchstones in this world but they make you look closer, pay attention, and take delight in unusual accomplishments. You will trumpet your child’s inchstones from the mountaintop, even when they’re so different from their peers’. And you get to celebrate yourself as well, you know. You will find a well of patience and strength and fortitude you didn’t know you had in you. So go raise a glass to YOU! You can do this. You ARE doing this!



This journey, like many others in life, is not a straight path. Once you find your way and get comfortable in Disability World, you may be surprised by grief again. There you will find others who say, “me too.” Know that there are others who have gone before you, made this path a little bit easier, and want to help.

You can contact me anytime at heather@familysynapse.com




You’re new here in Disability World and may be overwhelmed by the alphabet soup you’re encountering. Check out this Glossary of Terms to help you.

Social Media has been an incredible way to connect with other families. Check out these Maine-based group: