For years I’ve told the stories of men, women and children struggling to survive amidst conflict, poverty, human right abuses and a wide array of life’s challenges. Every single one of them had a story to tell that contributes to the diverse tapestry of the global family.
And now it’s my turn.
At a time when globalization and the Internet have connected people across the world in more ways than ever possible before, it’s profoundly disconcerting to feel completely alone. And yet, as my family battled to not only survive – but thrive – though my son’s special needs reality that is exactly how I felt.
Most friends, family and colleagues simply could not understand, no matter how much they loved us. When it came time to put in a feeding tube or make the difficult decisions concerning our son’s health, we were inexorably alone. And scared. And angry. And overwhelmed by the amazing love we felt for our son.
I looked everywhere for answers, support, help. I got bits and pieces from different places- but it exhausted me. And throughout the search the one thing I never found was a safe space.
I’m looking to change that – for parents, caregivers, advocates and supporters of children with illnesses or special needs.
Part one is to tell my family’s profoundly difficult but amazingly rewarding journey in a blisteringly honest way that sometimes scares me. The work, currently titled Born into Battle: Surviving and Thriving Amidst a Child’s Complex Medical Situation, isn’t about the suffering – though that’s a part of journey, it’s about acknowledging the pain and allowing the love to work its magic.
Part two is to reach out and create a place for people to gather and discuss the many emotional, practical and medical issues that we face when caring for an ill or special needs child. As I told @Aspiringmama (a.k.a. Pauline Campos) recently “nobody understands the awe and awful that accompanies caring for a sick child better than others in a similar position.”
I’ve started up a #specialteams trend as @SpecTeams on Twitter and will be hosting a chat every Wednesday evening 8E/7C/5PST U.S. time zone. The first chat is tomorrow, Wednesday, February 17, 2010 and the topic is “Safe Spaces: Sharing the awe and awful.”