Sometimes life happens and pulls us out of our comfortable existence. After that, everything is forever changed. And at first, it feels wrong and unrecoverable. So very wrong. And it also feels like everything we thought we knew about the world was also wrong.
Want to find out who your real friends are, the ones that can help carry an uncomfortable load? Just experience trauma. So on top of your life feeling like hot, itchy, too tight polyester tights, you lose friends or connections because your story no longer fits theirs. Your story and your new needs make them uncomfortable. Their same life makes you uncomfortable. People can only meet you as deeply as they meet themselves. You are forced to get to know what you are really made of.
I began to realize our life was not the same as everyone else's when Grey attended Early Intervention preschool twice a week. A friend asked me if I wanted to meet her at (the gosh awful) Chuckee cheese with 2 year old Grey and baby Parker. We had lived in Fresno for about a year, and I was just starting to make real friends. And I really, really wanted to go, but it was our first week of home behavior therapy- a therapy used with kids with autism. I asked the person in charge of our previous ABA therapy program if we could go to Chuckee Cheese with our therapist.
I'm sorry, Grey is not ready for an outing yet, she said, in that -actually not sorry at all- way. He needs to learn safety commands first. Otherwise it's dangerous for him. (Commands? I wonder. What is he, a dog?!)
Oh, Ok, I say, ready to just leave and go home for a quick lunch before his therapy.
He's just not there yet, she says, looking at me with pity.
I feel myself shrinking into the ground. Wanting this conversation to end. I get it! I want to scream. I've raised him! I know how hard he is! I know he doesn't stop when I say stop! I know he will try to run in the parking lot. I know he has no fear of me or of a moving car. I ALREADY GO OUT WITH HIM ALONE EVERY SINGLE DAY. Wouldn't someone accompanying me in fact be SAFER? But instead I actually say, Ok, I understand, like I do...but I don't.
I walk to our car to leave preschool. A task I always deeply dreaded, due to the fact that we had to park far, and walk by a playground but never had time to play. It always resulted in a physical struggle. I would fight Grey's tantrum with all my might, while Parker was strapped to my chest, sometimes getting hurt in the crossfire. I wrangled Grey to the car and buckled him in his carseat. I go to quickly change Parker's diaper in the back of the car. I open the hatch to our car, and the dohicky responsible for holding the door up and open is unsteady and the door slams down on my head.
Owwwww! I yell out in angry pain. It was the gateway to all my sadness. I start to sob in the parking lot. My head hurts soooo bad, I want to holler angry curse words at the top of my voice. But my heart hurts so much worse. I get into the driver's seat, and I can't function enough to start the car. All I can do is cry. I just want to go to Chuckee Cheese, I cry over and over again. I just want to be a normal mom, with a normal life. I don't want this one, because this one hurts.
That was five years and a million times ago that I have realized that our life is not the same. Sometimes our life is different indifferent. Sometimes it's different bad. And those realities can feel like a door slamming on my head. I've also realized, so many of our lives are not normal. Even if they look normal.
There is no Summer camp for us. No dropping my boys off and taking off. No letting them play in the backyard alone while I make dinner. There is no tossing the ball in the front yard with dad. No books before bedtime, because they just aren't interested. No regular play dates because we have therapy every day. Besides - most kids don't say- let's invite Greyson and Parker, they are so much fun. They don't say that because my kids aren't fun to be around by kid standards. They don't even play with other kids- so I get it. But it hurts. All of that can build up and hurt. I'm not the mom who can take off on a whim to Chuckee Cheese. Despite the fact that I hate Chuckee Cheese, that makes me sad at times.
But I've also realized, sometimes our life is different good. Really, really different good.There are experiences we've had and people we've met that we never ever would have- had our life not been touched by autism. Teachers who love my boys like their own, and get almost as excited for milestones as we do. People who go out of their way to include us in the best life has to offer. I'm reminded again and again, people are good.
My boys show me the best of humanity.
Today we got to experience different good in our life, and we are all still glowing. Last week I posted a video on Facebook of Greyson making his latest request, "I ride airplane". Now you know when you have a child that is language challenged, you are constantly trying to help them understand the power of their words. When they ask for something- you do your best to try and make it happen. Especially when they use three words ands verb they have never used spontaneously! And let's be honest, sometimes when you see so many things in the world your child can't have due to autism- you want the answer to be ABSOLUTELY YES for once.
For the past couple of months, Greyson has been making this request, "I ride airplane". Sometimes he asks over 100 times a day-seriously. And he stumped me. We aren't going on vacation anytime in the near future. Toy cars, we can do. Air plane rides- not so much. And this kid was ridiculously dedicated to his request. Sometimes he said it over and over as he fell asleep at night, "I ride airplane."
So, soon after I posted a video of Greyson saying, "I ride plane." An amazing woman who reads our blog, reached out and offered to give Greyson that very ride.
My face still hurts from smiling.
He was smiley excited. I don't think I have ever seen him smiley excited in his life.
So excited he forgot the "Ready"!
His energy and body was calm. He stared out the window, silent. Mesmerized. Not an ounce of fear. He LOVED it. Happy. (So so happy). His happiness instantly became my own.
Greyson and his new friend.
Dawan, and Tom- Strangers that turned into instant friends, You are incredible, and you made a difference in our lives today. Thank you for your generosity of time and heart. Thank you for making my boy happy. Thank you for making the answer, YES. Thanks for taking Michael, Grey and I on an amazing ride throughout our beautiful valley.
Most of all, thank you for reminding me, and everyone that reads this- that people are (SO) good. The world needs it more than ever now.
PS- Greyson. Don't even think about asking for a pony. Love, Mom
Everything about this post makes my heart happy.ReplyDelete
I went from heartache tears to happy tears in the same post. So very happy for you and Grey, and for the people who remind us how very much good there is in this world!ReplyDelete
It's wonderful seeing Greyson so truly happy! I read this today in the New York Times, and thought of you. Here it is--it's an inspiring piece. Best, Lauren/longtime reader/mother/Boston, Massachusetts
Greyson was calm because he was flying! He didn't need to flap to fly for a change! :-D Clearly he loved it. I love flying, too. :-)ReplyDelete
His smile! What an amazing experience!ReplyDelete
Real tears of joy. Wow. What a story. I cannot wait to hear what else Greyson will say about the experience.ReplyDelete
May God richly bless your new friends for their generosity.
Happy tears!! This is amazing!ReplyDelete
So thankful for the good in the world!!!ReplyDelete
Oh Chrissy, I have missed you! LOL I let life get busy. Heck, who I am kidding, life rolled over me and got busy without my saying it could! And the powers that be at work changed the settings so I couldn't see your gorgeous pictures when checking the blog there. I didn't check your blog at home, and it's been a few months since I've seen Greyson and Parker's smiling faces. I need to make a habit of reading your blog. Because with everything else going on in the world, I love seeing your posts of life going on, and your boys growing and learning. I guess it grounds me. I'm sorry to say it, but you know how it is. If everyone put their problems in a pile and we all had to/got to choose a problem, everyone would choose their own back out of the pile. So I guess it's that I have problems, but I don't have your problems, so I can live with mine. Does that make sense? Anyhow, bless the people with the plane who made it so a mom who has to say no way too often could say yes. And for giving Greyson an experience he obviously loved!ReplyDelete
Love to you all.