The Power of Words

When we received Teddy's diagnosis, we floundered for a month wondering what we could control with such an unknown (and quite frankly dismal) diagnosis. We felt more optimistic when we decided to start this blog to create more awareness and help other families with this diagnosis connect. It gave us a sense of purpose, an ability to control something and a way to take action.

"I write to discover what I know." —Flannery O'Connor

For me, writing has always been therapeutic. It's a way for me to sort through my thoughts and to feel balanced. This has been true of me as a child with my stories, diaries and journals. There have been times when I haven't written in a while that I feel unsettled and need to let the words flow. I much prefer writing my thoughts than articulating them in spoken word.

"Words are a lens to focus one's mind." —Ayn Rand

As time has progressed, I've discovered another purpose for Teddy's Triumphs. It allows me to look back in time, to remember the positive and past milestones accomplished. Granted, there are certain posts that I avoid reading again unless I'm really braced to relive the terror of the seizure that ended with us in the ICU or the mixed bag of emotions from our NIH stay.

"We write to taste life twice, in the moment and in retrospect."  —Anaïs Nin

More recently, I've seen the impact of posts I've written through conversations with Teddy's principal. They've prompted considerations and action. And that conversation has reminded me to take action through the appropriate channels before coming here to focus my mind.

Also, recently, the true purpose for the blog has come to fruition. I received an e-mail from a parent whose adult child was diagnosed with this CDG-PIGN. She reached out, and we've sent several lengthy e-mails and even spent an hour on the phone discussing our children. If this is the only family with CDG-PIGN that finds hope and a sense of community from Teddy's Triumphs, I'll consider that a success.

"Words have a magical power. They can either bring the greatest happiness or the deepest despair."  —Sigmund Freud