Special-Needs Parent: Who Is Your Tribe?

Special-Needs Parent: Who Is Your Tribe? November 1, 2018

It was 2012, South Sudan (a country in Africa) was only a year old at that point. I was in a refugee camp on the border of South Sudan and Sudan. Refuges were flooding into the camp daily by the thousands, as tanks were attacking only 8 km away.

I met Beauty as I was helping lead a trauma healing program for the refugees. Beauty came to our workshop so she could be trained to help her family and tribe deal with their pain, sorrow and loss. Beauty was in so much emotional pain. It was not uncommon to find her staring off in the distance, no emotions showing and even slightly turned away from the group as she wrapped herself in her cloak, as if to hide from the rest of the world.

In the afternoon, our group would end and each participant would return to where they were staying in the refugee camp and at night, you might be surprised by what you would find. You would find Beauty with those members of her tribe and family that made it to the refugee camp. You would no longer see a stoic Beauty with flat emotions. Instead, you would be greeted by the sight of Beauty dancing and singing to the beat of the drums with the other survivors in her tribe.

This dancing and singing could be heard on a nightly basis and was not restricted to Beauty and her tribe. As I lay there in my tent at night, the sounds of drums beating and people singing could be heard rising from all around the camp.

As a parent of a child with special needs, there have been many days where I felt like I was in survival mode. There have been many days where I didn’t have the strength or energy to deal with the emotions that I was experiencing. There have been days where I wish I could wrap myself up in a cloak and turn away from it all. Using it as a protective wall that I could hide beyond and not have to face the reality of what it meant to be the father of a son with special needs. The pain he was in constantly. The impact that caring for him was having on my wife. The extra pressures that we had of not being able to pay for needed treatments.

Can you relate to this?

Let me ask you, who is your tribe? Who is your community? Who are those people that you can let your cloak down with and be real with?

source: lightstock

When we are grieving, we can’t bury the pain but we also can’t let our pain define us. When we are under stress beyond what we can bear and think that we will collapse if we get one more piece of bad news, we need that tribe. We need that community that “gets it,” a community who already knows our pain because they have been through it. A community that we can be with, without always diving into the drudgeries of the day and know without saying anything that they understand. That group of people that you can be real with, laugh with and even dance with to the beat of a drum.

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