welcome to the club

 

Last May, a friend of mine was desperately searching for answers. Despite perfect hearing, her baby girl wasn't responding to her name. Despite seemingly typical physical function, she wasn't pointing or gesturing. Babble was minimal. Actual words were non-existent. She knew that something wasn't right. She was terrified. 

It was a terror I knew well. It was that awful, combustible cocktail of paralyzing rage wrapped in the frustration of impotence - curled inside an impenetrable wall of abject fear. I knew it because I'd lived in it.

I wrote to her. That's what I do - I write. I put it on my blog - because that's where I write. 

I wrote about fear and pain. I wrote about doubt and frustration. I wrote about confusion and seemingly impossible learning curves. I wrote about feeling completely overwhelmed.

I wrote about faith. I wrote about progress. I wrote about love. I wrote about mothers' hearts and their ability to stretch beyond their imagined limits. I wrote about conviction and about finding a voice. I wrote about gifts - precious, life-altering gifts. I wrote about compassion. 

She didn't read the letter then. She wasn't ready. I understood. Because I remembered that too. That feeling that the slightest word of understanding might shatter my carefully constructed and desperately fragile facade.

I thought I was writing about autism. I thought I was writing about a journey specific to those of us with children on the spectrum. I thought I was writing to one person.

It turned out that I wasn't.

According to my stat counter, just shy of five thousand people have read that letter since May. It has made its way around the world and back. Links came in from parenting forums, on-line support groups and every corner of the special needs community. 

But there was one link in particular - one conversation - one moment - that I will never, ever forget.

I found it fascinating to track the letter's journey around the Internet, so every few days I would check to see who was linking in. The first link I clicked one morning took me to a forum for new parents of children with Down Syndrome. I wondered if perhaps someone there also had a child with autism. Why else would the letter be there? But these were newborns. It didn't make sense. 

I poked around a little bit, looking for the connection. What I saw took my breath away. 

A woman had written in to the group desperate for support. She was scared. She was pregnant and had just found out that the baby she was carrying had Down Syndrome. She didn't know where to turn or what to do. She had stumbled upon the forum and hoped someone might be there to talk to her - to offer some hope for her, for her baby, for her future. 

The first response to her was a link to the letter that I'd written to my friend. The one supposedly about autism. "You need to read this," said the response. "It says it all. There's hope."

I read back over the letter. The word 'autism' isn't in it. Not once. Then again, I'm not sure it would have mattered either way. Because, as I learned that day, while the specifics of each of our situations may be unique, there are commonalities in our journeys that bring us together. 

We come here to Hopeful Parents to share our stories. To learn from each other, to educate each other, to support one another. And we come here to see ourselves reflected back in the experiences of others.

I am still surprised when I find a piece of myself in posts that should be so foreign to my experience, but it happens EVERY time I come here.

I do not have a child who is medically fragile or one who is explosive or violent. I have never had to face being told that my child's life expectancy is short. I don't have a child with a physical disability. I have never suffered the unfathomable loss of a child. 

But I find myself in each and every one of your stories. And perhaps in some small way you might see just a little bit of yourself in mine. 

Keep writing - please. Keep sharing the bits and pieces of your journeys and building empathy one post at a time. You never know who is out there in the ether - looking for understanding, desperate for solidarity, seeing themselves reflected back in your words, and finding HOPE.

Read the letter here. 

 

  Jess can be found at Diary of a Mom