I was a plumber. An electrician. A teacher. A chef. Wait- that's a huge overstep, I'm a bad cook. I was the line order cook with his butt crack hanging out at a terrible diner equivalent. A dog catcher. A trash can bringer inner. A booty wiper. A fun killer.
Today Parker was trying desperately to compete with reasons my son is crying.
I would not let him have the carton of raw eggs.
He wanted the fridge open.
He is crying because he couldn't reach the eggs.
He is crying because I closed the refrigerator door.
Despite the over abundance of imperfection today, I'm not crushed or defeated. Today I had perspective. Or maybe I just didn't take things so personally. Maybe my Effexor was actually working.
I heard weird things come out of my mouth as many mothers do.
Do you have to go potty? (Greyson- "No"). Then please put away your penis.
Parker, No more licking the television
Why did you put the whole roll in the toilet?!
Okay five more minutes of naked time
Today was still a gift. If I had all the gifts in the Universe to choose from- I would have chosen today again and again and again.
Parker worked on numbers. I do that exact same lip deal when I'm concentrating. Just when I think I can't love his details any more than I do. I'm obsessed with him. I want to throw a strap around him and wear him like a purse.
Grey had water play at school.
And we got to see the trash truck go up and down our street. I'm certain there will be trash trucks and water play in heaven. (And raw egg toys.)
Oh Wednesday, you were sweet liquid perfection.
Oh and my friend Lisa won. And together we made the front page of the newspaper- which made me laugh and smile all day long. I practically have a career in politics now.
*******
Sometimes I see special needs adult community outings- like at the mall or the bookstore or the grocery store. There are chaperones that keep them safe and help them function in these real world environments. They must have always been there right in front of me all along but I never noticed until now. Sometimes they make me feel hopeful. Sometimes they make me feel sad. I stare hard at the spectators walking by them. Watching for any change in facial expression. Will they stare? Feel uncomfortable? Show pity on their face? Smile? Not notice? Because suddenly each one of those adults could be my children and I care about each one of them. They are my angels- my Greyson and Parker grown up. For a fraction of the tiniest second I notice a double take and then continued conversation. I see some people give them extra room, more space.
I know it is easier to be accepting of a sweet little boy who stays to himself. Or flaps. Or spins. Or doesn't look you in the eyes or answer when you ask a question. We are more accepting of children. We expect more from adults. But even adults with special needs are perfect in design exactly the way they are. They are just not the way we are used to seeing.
One older boy- probably 16 or 17 raises his arms and at the top of his pants I notice he was wearing a diaper. I ache in a place inside I didn't know existed. It's not fear. It's not pity. I don't know what this emotion is so I just hold it gently and very close to me. And then when I am by myself, tears come to my eyes. I realize the feeling. It is love. Love for this boy I don't know. Love for his Momma. Love for the grown boy who could easily be mine. Or maybe yours. But I don't understand why this love hurts so sharp. I just hope they are happy. I can't tell from their faces, but I really hope they are.
"I just want them to be happy", I've heard it 100 times. I've said it a million times more. But there has always a parenthesis behind it. "I just want them to be happy,"(and smart), (and a doctor), (and talented), (and beautiful), (and athletic), (and get straight A's) (and get married) (and not have autism). Why wouldn't we want all the things that we know makes their life easier? But autism is editing my life in ways smarter and better than I ever could. It's striking all the parenthesis from its path.
I just want him to be happy, truly be happy in its most organic form.
For a long long while it felt like Greyson's happy was mostly gone. There was so much about the world that made him so angry and frustrated and overwhelmed and sad. Through lots of therapy he relearned to tolerate the world. And then he even learned to love much of it again. He found his happy, a happy that doesn't always look like yours or mine, but the happiest happy I've probably ever seen. And so I am happy in my world stripped of parenthesis.
When you see these grown ups with Super Powers, please, don't feel like you have to part the seas. Don't look the opposite way to be polite. Just look and smile knowing you just witnessed someones angel.
So much love and hugs,
Chrissy
And on Instagram @lifewithgrey
I just saw such a group at a bowling alley. This gives me so much perspective. I love your blog!!
ReplyDeleteLove and happy..it's what counts! At the end of life it is all people talk about, those they loved and who and what made them happy. None talks about their PhDs or law degrees, they talk about love and happiness. We all need to remember that and hold on to our own happy. I have always told "my" kids that all I want for them in life is to be loved and be happy and I mean it Thanks Chrissy again for this important message.. You truly are changing the world. Xoxo
ReplyDeleteLove this post! You have a way of saying things exactly the way I would say them - if I had the gift of pen that you have! And P.S. my fridge door looks JUST like yours...right down to the bottle of Pinot Grigio (at least mine is Pinot) tilted sideways in the bottom shelf because it's too tall to stand straight up! Be happy - Cheers!
ReplyDeleteAs a mom of a child on the spectrum, I was glad (when he was diagnosed) that I hadn't thought too far into the future about what I thought he should be. Still, it hurt, because all of a sudden, you realize some choices might be taken away from your child. But yet, after we tackled the parts of him that were causing physical discomfort, and after therapy gave him a way to communicate, the light came back into his eyes (like you said happened with Greyson). I remember thinking, "He's happy!", and I truly felt at peace. Sure, I would like my son to go to college, to have his own job, to be able to live on his own. I want him to have the choice to do all those things. But, most importantly, I want all of my children to find connections with others that make them feel good, to be caring individuals, and to find peace and happiness within themselves. It's funny how autism can strip you raw and get you right down to the essentials.
ReplyDeleteI'm a new reader--after seeing your guest post on ETST. My oldest son, Luke who is 8 has Down syndrome and autism. A mash up of the 2 blogs. I have the same picture of Luke standing the fridge crying. Love both your writing and photos.
ReplyDeleteYour boys are adorable!
This was beautifully honest and raw. Thank you.
ReplyDeleteThank you, you've made my day.
ReplyDeleteI want to wear him like a purse........so true. My obsession with my kids feels exactly this way. Thank you for being real and raw and brave. Thank you for your perspective. It makes me a better human being. Love you xo
ReplyDeleteyou made me cry b/c you spoke my heart. thank you AGAIN!
ReplyDeleteI'm a new reader too…love reading your blog! Thank you!
ReplyDeleteBeautiful!! I know that 'love ache' and boy do I appreciate it.
ReplyDeleteI look forward to my Thursdays at Panera, when I get to open up my computer and read your blog. Today I laughed because again its like Im reading about my life. Our boys wear the same clothes, are the same age, have the same tantrums, same flash cards...I just wish we had an awesome trash man! I also cried and while rubbing my eyes I realized I still have yesterdays mascara on which made me laughed again (Im sure everyone at Panera thinks Im crazy). I cant even begin to describe how connecting to your life helps me finsh out my week with a wonderful light heartedness and renewed perspective on embracing a life full of beauty even though its hard, very different, and exhausting. So thank you, for sharing your life, your heart, your feelings and your sweet beautiful boys with all of us!
ReplyDeleteThank you thank you, found your blog on ETST, and today's post really moved me. My son is almost 15, and with multiple diagnoses, his happy definitely looks different than your average teen. But the way he lights up, and embodies joy at conducting music with his baton, or getting a new pair of crazy socks is something I wish I could bottle up and keep with me at all times. Thank you.
ReplyDeleteAnother reader who hopped over from ETST and a mom of a child with Down syndrome here :) ...Absolutely. love. your. blog. It speaks to all those highs and lows I feel each day. (Oh, and the "Don't lick the television"? I completely identified. My worst was probably "Don't put the ant trap in your mouth." No more ant traps.) Yes, and I feel horribly sad when I am made aware of a much older child or adult wearing diapers. I have been at the potty training thing for a few years now, and I think he will get it eventually. But, like you said, I just want him to be happy, no matter what. Thank you for sharing these thoughts with us.
ReplyDeleteLove your words and especially your honesty. Your writing is so relatable and real and you have a remarkable ability to put thoughts/feelings/experiences into the perfect words. I read your blog and find myself nodding my head saying, "She nailed it."
ReplyDeleteBy the way, "I want to throw a strap around him and wear him like a purse." Best.Quote.Ever. Thanks for sharing!
What a beautiful post..and funny too..and as always, I love your photos...
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