Sunday, January 17, 2010

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






  1. Yesterday, in the madness of a Saturday supermarket run, I was trying to work out the to do list in my mind. It was so crowded and I was in such a rush. "How am I ever going to get it all done?" I was so grateful that I was alone and not toting either child since you know how that adds time and expense to the trip. "Fine, just put it in the cart. Mama's in a rush."
    Then it happened. I got stuck behind a mother and her near adult son. He had planted himself, with the cart, smack in the center of the aisle and she was up ahead a bit, reading labels. I couldn't get by. "Excuse me." Nothing. He didn't even acknowledge. Wait...wait...wait. "Excuse me." A little louder this time. Mom heard me this time. She hurriedly and apologetically came back to the cart and gently tried to coax her son to move over with the cart. All the signs were there. She spoke softly, directly with few words, she didn't touch him, she didn't move the cart herself. She glanced a nervous smile my way. "No worries," I said, "let him take his time." She thanked me. We waited. And when he was ready it was time but not before then.
    Our paths crossed a number of times more from produce to frozen. I watched the patience and love. The pride is a successful trip. While I am sure she was grateful for my understanding, I wish she knew how they gave me permission to slow down. I wish she knew that I took a deep breath, chilled out, and got done what I could get done.
    So, you're right. You never know who is out there and how you are impacting their lives. Some people will find perspective when visiting these amazing blogs or by watching you parent a potentially explosive "stuck" moment at the grocery store.
    Thanks. Really.

  2. I found your letter about a week ago, and immediately posted it on my blog, sent it to my friend whose son has a seizure disorder, and to another friend whose boys have immune defiency and developmental delays. My son has apraxia and possibly autism. It speaks to all of us parents who find ourselves on a different path then we ever expected. Thank you for your words.

  3. Jess, you know you always make a difference. :-) Miss T, you made me cry really good tears.

  4. We are a big village. And I don't think we necessarily require specific tribes.
    I think that that's one of the gifts of being a special needs mother - that I know AM aware of who I am affecting and how.
    Thank you for the constant reminder that there is hope.

  5. Your letter has comforted me in times when nothing else could. I read your letter at least once a week and thank God that he gave you words that so many parents need to hear.

  6. I'd never read this letter before. It's wonderful. No wonder so many people have gotten hope from it.

  7. Jess, that letter is the one that got me started reading your blog (via Matt's Facebook page -- he and I went to elementary school together!). I've been lucky enough to avoid, so far, any gut-wrenching diagnosis, so I'm not even close to your target audience. But I have learned SO. MUCH. from your writing. You have a gift and I'm so glad you choose to use it in this way.

  8. I'm a writer and the mother of an almost fifteen year old daughter who has a severe disability. I also have two little boys. I have to tell you that despite my position as a "writer," as a very experienced mother of a child with a disability and everything that it entails, your letter still spoke to me. It's beautiful and affirming on so many levels. Thank you.

  9. I remember reading that letter last May (has it been that long already?!) and loving it, loving you for writing it. Uplifting stuff, my friend.

  10. Love everything about how the love letter reached around the world and back again!