Unexpected Gifts

So today's my birthday. Yes yes thank you. I was going to write about how I am so ready for a change. That it's rarely too late to chase your dreams. To make a change, defy people's expectations of you, how I can't believe how much change has gone on and that I'm registering for college classes for the first time ever next Monday.  But then my friend, A. from over at Try Defying Gravity (Go read her blog) posted this on my Facebook page.

So my unexpected gifts always go back to the incredible friendships that I would have never ever had. It's taught me to really see people. Not what they just might be showing but what's underneath the surface.  I'm grateful for all for my autism mama friends, the ones close to home and the ones spread out across the country. We are a diverse group but we all get one another and appreciate each other's differences. I would choose for our kids to never struggle the way that they do but I am so proud, grateful and blessed to call each and everyone of you my friend. 

Ed. Note: A. would like you to know that she really doesn't want to hit me but she would however like to smell my eyeballs.  Hey to each their own.

Happy Revisited

Ed. Note. This post originally appeared elsewhere back in January 2009. I am re-posting it as a reminder that while I may struggle and I have struggled more then usual lately, that Boy Wonder is happy 98% of the time. This is way more then can be said of most of us. His happiness is all the matters. My selfish expectations do not matter as much as his happiness.

Autism Autism Autism Autism Autism Autism Autism Autism

That awful word that beats in my head all day long from the moment I wake up till I go to sleep, if I sleep at all. It's always here sometimes louder then others, sometimes barely a whisper but always with me.

I am never distracted by other things enough to ever forget it. Autism. While I'm watching a movie. Autism. While I am in a meeting at work. Autism. While I am out with friends for a drink. Some days, it fills me with despair. Other days, it fills me with a rage that scares me.

It affects every aspect of my life. It has changed me in a way, that divorce, death of a family member and other hard knocks have never been able to change me.

It has shaken me every day over and over for the past year. The well meaning things people say make me want to scream some days. He'll be okay. He'll come out of it. Oh really, may I see your crystal ball?

But just when I am at my most wretched and worst, Boy Wonder will give me a gift. He looked at me this morning with a huge smile on his face and said "Happy!!! I HAPPY!"

Yes, you are my most darling little boy! That's what I need to remember that in spite of Autism you are a happy boy!

The Elevator

You go to the hospital or maybe the adoption agency and you go up up up in the elevator. Several hours or days later you come down and they let you leave with this brand new little person and you yourself are a different person. You aren't just you anymore but Mommy. You  think,"What the Hell? They're letting me leave? I don't know what I'm doing." There's no instruction manual. But you figure it out and you make good choices and bad choices. The good choices you keep. The bad choices are easily fixed. You adjust.

And then a few years later, you go to a different hospital.  You go up up up in the elevator. You fill out forms asking all sorts of questions about your baby's development. Your perfect precious baby. You go into see the doctor. Your perfect precious baby is so profoundly disabled that the doctor doesn't even need to finish the test. You go down down down in the elevator. You aren't just Mommy anymore but a Special Needs Mommy. You were just brutally hazed in to the club.

And again, you think," What the Hell? They're letting me leave? I don't know what the fuck I'm doing." There's no instruction manual. Now you doubt all your choices. Any decision is agony.  You worry about making bad choices because now you know the bad choice could make it so he's never independent. Or the choice between a group home or an institution when he's older. Or whether he'll speak or never speak. Or interact or rock in the corner. Or be sweet and loving or aggressive and violent. He can't tell you if he's cold, hurt, sick or if someone did something unspeakable.

And you ride the elevator every day. Some days it goes up and some days it goes down. You just hope you're getting off on the right floor.

You'll Make It Ok

4 years ago today, at 2 years 1 month and 5 days old, Boy Wonder was diagnosed with autism. When we left for the doctor's office that day, we weren't expecting to hear those words. It was the first time I ever felt real fear and sorrow. I remember crying hysterically and the doctor telling Big Daddy," She needs to get herself under control before she hurts herself and the baby she's carrying."   These are the things I wish I knew the first year.

• The first year sucks but you'll find Jess, Judith, Jeneil, Pixie and Tanya. They get you through it.
• Some people disappear. Some come back but many do not. You make new friends though.
• D. sticks by you. She gets Boy Wonder. She remembers this day every year and makes sure to call you.  
• That there's always room in the rabbit hole for just one more and there's always a hand to pull you out.
• Big Daddy goes to every meeting concerning Boy Wonder. EVERY MEETING. You never face the firing squad alone.
• When the doctor said BW would never talk, HE WAS WRONG.
• When he said he would never show love, HE WAS WRONG. 
• When he said he'd never initiate play, HE WAS WRONG. 
• The baby, you're carrying, THE DIVA, she's fine.
• And the Surprise, Sweet Baby Girl who comes along just 22 months after THE DIVA, she's fine, too.
• You'll finish a marathon in Boy Wonder's honor and his buddies from across town and across the country.
• You find the village. The sister mamas. The ones who tell you and who you tell when things go awry, you'll make it ok.

But what I really wish I knew on that awful day was that in the end, I'm strong enough to make it ok for my Boy Wonder, and his sisters. I may have to ask for help along the way but I will make it ok because there is no other choice. 

My Hero

   View from the Verrazano Bridge

I ran for my hero yesterday. I ran when I wanted to quit because I never let him quit. I ran because I had such a cheering section going for me on Twitter that I couldn't let them down. I ran on because Luau was waiting to run me in at mile 23 when he'd already finished hours ahead of me.

At mile 18 I hit the wall. I started saying the names on my jersey over and over again in my head to keep myself going. I had to walk the better part of the next 3 miles. I then saw a shirt that said, "Honey Badger Takes What She Wants" and I took it as  sign from the village to get my butt moving. I ran on because My Gurl was waiting at mile 26.

I ran on because Super Cuzzy drove up from DC to support me and take care of my kids.

I ran on for all 3 of my little darlings and Big Daddy who haven't seen much of Mommy on Sundays in months.

and for my best friend D. who loves me and supports me no matter what mess I get myself into on a regular basis. 

But my biggest reason for never quitting was my hero, Boy Wonder. He is my inspiration for doing all that I do every day. Him and his sisters.

Thank you again to everyone that supported me yesterday. You were all with me at the finish line. I swear. Look here's your medal.

Finish

I ran my last 4 miles this morning until the 26.2 mile run on Sunday. I was asked last night if I really planned on finishing last night. The answer to that question is YES. I will finish because I'm running for:

• The mamas who gave up their careers when the diagnosis hit.
• The mamas who had to work harder at their careers to provide for their child(ren) with autism.
• The mamas who would never speak up and now roar like lions when someone messes with their child.
• The siblings who get so much less of our time and attention because of autism.
• The naysayers who tell us all the things our kid will never do and yet our kids prove them wrong.
• The ones who believe our kids can do most things if given the opportunity and tools.
• My friends in the rabbit hole. (Stop hogging the tequila.)
• For the Daddy that dyed his hair blue.
• For those who are mad at God.
• For those whose faith in God carries them through the tough times.
• For those who send their solider off to war and fight the battle at home alone.
• For those who have paved the way in getting laws passed to provide for our kids. (Thank you Judith!)

But I am running mostly for hope. For my own hope for the future and for my fellow mamas hopes for the future.
I do know that I am never alone and I also know that autism is no longer an invisible disability.

To all my family and friends and friends I consider family, thank you for your support and for believing in me and my son. I love each and everyone of you.  See you at the finish line.