A while ago, I introduced you to Sarah Evans of the “Bringing Up Betty” podcast.  I was thrilled to connect with her, because I think her concept of a special needs podcast is much-needed.  As caregivers, we often run from one appointment to another or breeze through one crisis to the next with little time remaining.  Podcasts are a great way to learn, connect, and find community among other special needs parents.

I was honored to have been interviewed by Sarah, and we had a fantastic and dynamic conversation about caregiver grief.  I shared part of our story and how I’ve discovered meaning and purpose in the midst of so much uncertainty.

If there’s one thing Apert Syndrome has taught me above all else, it’s this: Life is a mystery, and we must live in the midst of it.

Living in the midst of mystery is hard, because we all want answers and solutions.  We want to make sense of everything, to understand the why and what of this (or another) rare disease.  But Apert Syndrome, like other rare conditions, does not offer us tidy answers to our eternal and nagging question, most especially, Will my child live or die?

20150601_12Even so, special needs parenting can lift us to a place beyond ourselves and the typical American dream.  We can learn to live in – and appreciate – the moment that has been given to us.  We find a way to somehow connect the temporal with the eternal by living instead of worrying.

In this podcast episode, I share with Sarah our challenges and hidden blessings as Ben and I raise two unique girls with very different special needs.  I believe the world needs the message of love that is so often expressed through the eyes of a special needs child.

Text Copyright 2015 Jeannie Ewing, all rights reserved.
Image Copyright 2015 Lil G Photography, used with permission.