Saturday, April 13, 2013

"You can't expect me to be fine, I don't expect you to care..."

{stream of consciousness}

(I just went over what I wrote and it makes no sense. But whatevs. I'm hitting Publish. I'm a rebel like that.)
It's a Friday night, and I have all of the lights out, a yummy smelling candle lit, and a cup of coffee. And to add to the tranquility, I'm watching "Say Yes to the Dress- Atlanta".

Ahhhh....

This writing project I have embarked on has been cathartic for me. While a few of these posts had been written a while back, it is the first time I have been willing to truly lay myself open to my feelings about PJ's autism diagnosis. It's been a little over a year since his diagnosis, and I have learned so much, with a lifetime of things to learn before me.

Today, we woke to gray skies and spring rain. The morning was busy- I was meeting a friend for coffee, reading to PJ's class, and then returning to school later for PJ's IEP. I had forgotten to pack PJ some money, so he could get a treat at the school bake sale (being held to benefit Autism Speaks in honor of Autism Awareness Month). I rushed to school before I met my friend with 75 cents in an envelope with his name on it. I knew that if PJ saw cupcakes and couldn't get one, it would be bad news. I made my way through the rain to meet my friend for coffee, then it was back to school to read to PJ's class. That is always so much fun- the kids are so cute and funny!

I brought PJ home for lunch, and he was completely crazed  a little hyper, running around the living room in circles so fast, he was blurring. I had a pounding headache, and per usual any time I have a school meeting, my nerves were jangled, sitting right on top of my skin. I was struggling to get my notes and papers together for the meeting while PJ asked for "help me with train tracks, Mommy!". It wasn't anything too terrible, just a little overwhelming and annoying.

With PJ's train tracks built and all of my paperwork together, I logged on to MyAutismTeam.com to write a quick "vent" post ("OMG! The trains! The headache! The IEPs! The rain!") and then glanced at my Facebook feed, only to find the story of a mama and dad who will say goodbye to their five year old son tonight. Their young Gavin suffered a seizure and went into cardiac arrest, and were just waiting for the official results of testing to let them know that their son was brain dead. I quickly logged back in to MyAutismTeam.com to amend my vent post:

You know what? Everything I just said? Forget it. In a milisecond I forgot what an amazing gift it is to raise my son. I know not every moment is sunshine and rainbows, but PJ is here with me in his perfectly imperfect little blonde, cyclonic body! Please, please, send this mama your prayers and love and warrior vibes...

A friend of mine who I lovelovelove (Hi, Fred!) told me that in reading my posts this month, he's cried. That wasn't my intention at all (Plus, don't be a wuss, Fred!). This thing that we face is hard. And so, so many people face it. One in eighty-eight kids, with mamas and dads struggling to keep their children a part of this crazy, amazing, beautiful world. I don't think that any of these parents and caregivers asked for Autism. Autism is an unwelcome little interloper.


But still...in the weirdest of ways, it's been a gift to us. We celebrate every small milestone. PJ was 2 1/2 before he said his first two-syllable word, and I have it on video. I watch it all the time. When he pretends to feed Thomas the Train his breakfast, Pete and I jump for joy. When PJ played ring-around-the-rosy with his friends, I cried with excitement to see him so happy and engaged. When PJ sweetly greeted his teacher, speech therapist, and occupational therapist by name, I was filled with pride. When he finally, finally drew a vertical line, a horizontal line, and a circle, I took video, then ran to the computer to e-mail his OT at CHOP, who worked so hard to try and help PJ develop this skill that seems so innocuous, and is such an important building block to help further develop his writing skills. The moments that might have been a passing flash of glee are cemented in my heart.

I don't like to compare grief and sadness. Nothing annoys me more then when people get into a Sadness Pissing Contest. "Oh, so and so had no right to be upset about that when I have gone through bla bla bla." Being sad sometimes that PJ is autistic doesn't take away from the sadness of someone going through something else. But, reading the story of sweet Gavin reminded me of all of the gifts I was given with PJ. I love my friends who have cried with me, who have shown us love and support or even a "like", I take all of it with me. But parenting is parenting is parenting. Some parents have a more liberal dose of heartache then others, but the joy...the parents who truly love to parent can find the joys under all of the heartache, and possibly celebrate it that much more.

This is my shot at parenting, and if I stay under a cloud of grief I'll miss the rainbows. 

2 comments:

Jamie Clark said...

great post. Love your blog, love it so much I awarded you the Liebster Blog Award. THis is not spam. I am just a somewhat new blogger wanting to show some blogger love. http://beingpositivewithadepressivesoul.blogspot.com/2013/04/two-liebster-awards-in-one-weekwoohoo.html

Breezy said...

Thanks, Jamie! This is so much fun, I am starting my post now!! Plus, now I have a new blog to read! Thanks so much for the bloggy high five, I'm so excited to pass it on!!