The other day I wrote a post about sliding into a deep, dark hole when I realized that my son would live most of his life without me. It scared me so bad that I heaved tears.
And then I heard from my friends. They sent me messages filled with light, laughter, and love. They reminded me that Jack is not in this world alone. My friends are here. A community is here. A whole word is here. My friend Ibby said we are channels of God's love and when I read that, I knew, I knew with the whole of my being that is true. I am a channel of God's love for Jack. And so are many other people. My family, my friends, people close by and far away, even people I don't know. Jack is not alone in this world. And the world is not filled with people who will treat him badly.
That's not to say that there aren't people who hurt others, people who don't know that they are hurting others, or people who have built shells so thick that they don't care. Magical Nana says that there are only a few truly mean people in the world - they just get around a lot. I don't want to spend my energy on them.
What my friends reminded me of is this: there are so many people out there, people like you, people who are kind and caring, who love their children, who love their partners and friends and themselves, who channel God's love so fiercely that they glow. They are not building places of fear, places that frighten and paralyze us. They already believe in themselves and the children. It's like they are building human chains of connection out of love. They aren't necessarily doing it loudly. You can't tell from their appearance or neurology. You can't even tell from their personality. Their voices may be quiet or they may be angry. But they are the ones who reach out. Who say I'm here, when you're afraid, when you're worried, when you're celebrating, when you're angry - I am here.
And they are here, right here, all the time. They are close and far. They are in our community. They are autistic, non-autistic, adults, teens, older, younger, black, white, gay, straight, church-goers, atheists, whatever. They are real. They are more real than those fears I have for my child. They are pure channels of love.
For us parents, we get scared for our children. For people who have been hurt, we get scared for ourselves, our partners, our loved ones. We stay scared a lot. But what I want you to know - what my friends made sure that I knew - is that we are not alone. We are in this together. We are looking out for each other, for the children, teens, and adults on the spectrum. And we are filled with light and love that comes straight through from a sacred place.
That's why we will be okay - all of us. That's why our children will be okay. They will be more than okay. They will be wrapped in love.
Thursday, May 16, 2013
Jack is waking up again at night. For a while, he was sleeping really well. But with this strep or whatever this super-powered bug is, he's been up a lot. Maybe it's because I'm not entirely sleep-deprived right now, but the night-time wakings are not setting our psyches on fire like they used to. Having very little sleep for years makes my child and me crankier than having very little sleep for a few weeks.
Last night, Jack woke up at three and wanted the music turned on. The Music is magic. We got The Music from my sister-in-law. She used it with her kids and passed it along to Magical Nana for sleepovers who passed it along to me when Jack was a tiny thing and our psyches were on fire from very little sleep. The Music is a CD of children's religious songs with a heartbeat going throughout the whole thing. When Jack was a baby, I rocked him in the green upholstered rocking chair for hours listening to The Music. It's the only music he remembers and he now swears that if he even HEARS the music, he will fall asleep. It's mostly true. I've listened to that CD so many times that I've thought about Jesus and all the little children and sleeplessness and a world full of people in pain and this little light of mine for many more hours than I used to.
After I restarted The Music last night two or twelve times, I realized that this was a psyche-on-fire day, not a fall-back-to-sleep day. So I asked Jack to go to the bathroom with me and when we were done, we went to the kitchen to feed the cats and because there are four of them, there's always some kitty who's hungry. And then we stood there looking at Jack's new tea kettle. I looked at Jack. I looked at the tea kettle. I looked at him holding his arms straight out with the fingers pointing at the tea kettle as if he could make it levitate. It's his expression for HOW AWESOME IS THIS THING. So I said, Would you like some tea? His eyes lit up like I had offered him a car.
When I was twelve years old, I discovered England. I thought I was the first, but I had the help of Miss Marple and Lord Peter Wimsey and the cast-off hand-me-down Beatles albums from Aunt Buffy. I became an Anglophile. I made tea. I baked scones. By myself, which if you knew about my start in cooking, what with ruining the Jello, you'd know what an accomplishment that was. I had no idea if I had made the scones correctly. They were heavy as a rock and crumbly as dry concrete mix. Now that I've had one from Starbucks, either Starbucks copied my recipe or I was indeed making them correctly. Heavy as a rock.
I was hooked on tea and the English. I didn't even begin drinking coffee until after my son was born. Because psyches on fire need coffee. So my child saw a tea kettle somewhere in one of our books a while back and has been set on acquiring one of his own. Having had a rough couple of days, I made an offer. Shall we go out and find a tea kettle? I am not sure it's right to introduce comfort/reward by shopping, but it works for us.
When we found a tea kettle for under $20 (a pricepoint I had not anticipated), we couldn't contain ourselves (Bed, Bath & Beyond $12.99). We tucked it, a toilet scrubber, a fake wood placemat we will use to modify a car, and some less than awful potpourri into our car and headed off for home.
Now, it's 4:00 in the morning and my son says to me "Can we have some tea and chat?" Do you know how long my twelve-year-old Anglophile self has been waiting for this?! A child of my very own who wants to have tea and a chat?! I LOVE THIS KID!
4:00 am or not, my psyche was no longer on fire.
Wednesday, May 15, 2013
"People are put in our lives for a reason." Usually people say that to parents of children with disabilities to answer the question of why some people have a child with a disability and others don't. It's trying to explain the reason that some people seem to have more difficulties in their lives than others. It's asking the question that I first started having at 13 years old: Why do things happen?
But saying a child with a disability was sent to teach me a lesson of some sort, even if it's a good lesson, seems really unfair to my child. Does it mean that my child has no other purpose except to teach me a lesson? That's just not true. He has his own life and his own purpose, if nothing more specific than to have a meaningful life.
All life - all lives have meaning unto themselves. Just because. If we need to answer the question of why something happened, we can search and search. Is there any reason that will satisfy you? Can you think of any reason that will make you feel better about your challenges?
God didn't give my child a disability to teach me about fairness. I am learning things, valuable things from my child, but because I choose to reflect about things and change myself. If my child had died when he almost did, his death would not have been a lesson to me. It would have been a tragedy. That's all. Maybe I would have had a deeper appreciation for life, for the brevity of life, for appreciating the good things. But I have that now, and just from being told my baby would not survive.
People tell you not to compare troubles either, but let me tell you. When I was going through infertility the first time, it was eight years of torture. Not getting pregnant, not having a baby, having miscarriages. It was awful. I participated in an online forum with other women going through infertility. It was a very lovely, very supportive group, cheering and crying for each other as things happened. But anger flared up when some of the group who were going through secondary infertility - not being able to conceive a second child, but having one child - insisted that their pain was the same, the exact same, as someone going through primary infertility. Let me tell you right now, it's not the same. I've been through both. Not having any children is more painful than having one child and not being able to have more. It just is.
It wasn't considered supportive to say that out loud. We put out the fire and went on trying to support each other best we could. But it's ridiculous to require others to support your troubles by declaring that the pain is the same. Some moms have had a baby who died. That's worse than my baby almost dying. It just is. It doesn't make my pain any less valid, but it is simply not the same.
Parenting a child with autism is intense, but my son wasn't sent here to teach me a lesson. He is a gift, plain and simple, like every child. I can learn about myself and about life from our relationship or I can refuse to learn. In fact, I'm pretty sure there are other people in my life who are here to teach me a lesson.
At least, they think they are and they are MUCH more difficult to deal with than my child.