Grace for Rett » Grace's Life with Rett Syndrome

This Rett Tribe

“…there are so many variations, interpretations and individual experiences of bringing children into and up in the world, that giving birth in itself is not a unifying experience.” –Sara Bran

It’s so true of motherhood that simply giving birth doesn’t make us in the same tribe. I found that when I was home educating, even being a mum AND homeschooling didn’t = tribe. Because there were the organic mums, the laid back ones, the overbearing ones, the Christian ones and then the families who ‘let the spirits name their children’ and did séances (uh…”the family who contacts the dead together stays together”?). There were the ones who did school-at-home and then the un-schoolers.

I’ve also found this to be true of having a child with Rett. Merely having a child with Rett doesn’t mean we’re all in the same clique tribe. Rett isn’t a tribe, but I guess in the beginning I kinda thought it was. You would’ve thought that my experiences in the home ed world would have better educated me to this end. I came into the world of having a disabled child with the idea that we were all in this together and that meant that we’d all be friends. But even though we’re a subculture who can throw around medical terminology like noone’s business, we are still all so vastly diverse that we’re bound to find difficulty all seeing eye to eye.

There are very strong opinions on where charity money should go (research only? care only?), whether the kids should be medicated to the hilt or not, some who find value in alternative therapies, those who are dead-set against vaccines and those who love ’em. There are glass half empty people and glass half full. Those who find a joy in raising a child with disabilities and those who hate it. Poor people. Rich people. Mums who work, mums who stay at home. There’s no end to the diversity to be found in this Rett life.

So I may be thinking “can’t we all just get along?” but the only person I can control is myself. The only person whose opinions I can change is me. The only person who I can force to love others anyway is ME. I say why not just “live and let live” and be aware that just because our kids have the same diagnosis, that doesn’t mean we’re automatically in the same tribe. And that’s ok. Right?

Priscilla C. Briseno - June 13, 2013 - 7:43 pm

We all have deal with different aspects and severity of Rett

Candice Samples-Morris - June 13, 2013 - 7:59 pm

I could not have said this better. When we initially just had a diagnosis of hypotonia I felt isolated because it wasn’t much of a diagnosis. Fortunately, I found a group of women that were also hunting for a diagnosis beyond hypotonia and we created a very supportive group. Then the Rett diagnosis came and I see how diverse the community is and how I fit into it will depend on how I choose to conduct myself. I must admit, it was a bit disheartening to realize that the Rett community is a tribe, but not at the same time.

Scott L. Vannatter - June 13, 2013 - 8:37 pm

Very well said. It’s that way in almost all walks of life.
Scott

Sara Perkins Bran - June 14, 2013 - 10:32 am

love the seance tribe 🙂

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