Saturday, September 15, 2012

Some Days I Don't Feel So Lucky

While attending the BlogHer Healthminder session, I had the pleasure of meeting Kate Canterbury, who blogs at The Guavalicious Life . We chatted only briefly but she was funny and down to earth and she liked my dress (so obviously she has good taste).

I have mixed feelings about BlogHer, but attending the Health Minder session was one of my BlogHer highlights. I loved every panel I attended that day. (There were so many takeaways that I haven't had the chance to write about just yet it, give me time) But Kate Canterbury said something that has stayed with me.

During the "Blogging About Your Special Needs Child" panel session (you can read the full transcript here), Kate said: "I don't feel lucky to have special needs kids. It's extremely hard on our marriage. I think it's valid to share. But I don't want my kids to think they didn't love them. I don't want readers to think I don't like my kids." 

And as soon as Kate said it - the room got really quiet. There were tears in my eyes as I nodded and when I looked up, I noticed there were many women with tears in their eyes nodding their heads.

Kate had the courage to say - out loud - something so many of us keep tucked away in the back of our minds. Because we are scared. 

Scared of what people will think about us. Scared of what people will think about our kids. And scared because people are quick to point, fast to talk and yet so slow to understand.

I love The Boy. My family and friends who know me beyond the blog, know I love The Boy. And I hope, if you've been reading me for a while you know it too.

And I can assure you, I do not want to cure The Boy of anything. 

But that doesn't mean that our life is easy.  That raising a child with autism isn't the hardest thing I've ever done. Or that I don't get sad or mad or frustrated.  

I may be a mom, but I am allowed to have feelings - all of them.

And some days, I don't feel so lucky that my kid has special needs.

I don't feel lucky when I'm up all night worrying about IEP meetings.

I don't feel lucky when my heart aches seeing 6 year old boys whizzing by on their bikes, calling out taunts to their pals.

I don't feel lucky that I had sue the Department of Education just to get an appropriate education for The Boy.  

I don't feel lucky spending thousands of dollars on therapies instead of softball, karate or soccer.

I don't feel lucky that the closest appropriate school is twenty two miles away from home. 

I don't feel lucky when I have to turn down invitations because I know it's something The Boy can't handle.

I don't feel lucky asking The Boy questions and he isn't able to answer.

I don't feel lucky that date nights with The Husband are few and far between because there aren't many people we trust to stay with The Boy.

And I don't feel lucky that the thought of out living The Boy by a day, doesn't seem so bad.

Just as autism is a spectrum, autism parents experience a spectrum of emotions.

And maybe none of my feelings make sense. But you know what? The fact that I have to fight for insurance coverage, school placement and therapies - doesn't make much sense to me, but I go with it.  

But even on those days when I'm not feeling so lucky - I am lucky it's a fleeting feeling. Because most days, I feel like the luckiest mom in the world to have a boy as sweet as mine.


AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.