Driving in the residential neighborhood I live in, my eyes focus on the intersection coming up at the end of the street. Suddenly, there is a cop standing on the side of the road, with his hand up, telling me to stop, then directing me into the parking lot of a row of apartments.
There are two of them. Young bucks. One in a police car, one motioning drivers over. There are at least half a dozen cars pulled over. Speed trap.
He swaggers toward my car, sunglasses as armor. I roll down the window.
“Do you happen to know what the speed limit is right here?” he asks in a condescending tone, motioning toward the street behind him.
“I’m not sure,” I say.
“Where do you live?”
“I live just around the corner, but we are new to the area.”
“How long have you lived here?”
“A couple of months.”
“You’ve lived here a couple of months and you have never noticed the speed limit? You want to take a guess as to what it is?” He might as well add “you stupid shit,” to the end of his sentence.
He looks at my license.
“This is an Ohio license. Do you happen to know how long you have to obtain a Florida license if you are planning on living here?” (you stupid shit?)
I shake my head.
“30 days,” he glares.
I look at him, and nod, “Okay.”
“I’ll be right back. Don’t leave the car,” he commands. As if this mom in a ball cap and yoga pants is going to make a run for it.
As he walks away from me, his partner ushers another vehicle into the lot.
I have not gotten a speeding ticket or any other traffic infraction in 25 years. The last time I got pulled over was about 18 years ago. I had gone straight in a turn-only lane, on my way home from an intense therapy session. The cop was more hostile than today’s cop. He screamed at me, and I completely lost it. I was crying hysterically. To the point where he changed his tone and wondered if someone had died? Was I sick? Had I just come from the hospital with a bad diagnosis? He actually asked those questions. I couldn’t even respond I was so broken up. He let me go.
Today when the cop walks back to his police car, I close my eyes. Rather than taking in his attitude, I study it. The condescension is probably part of his training. It isn’t personal. It has to feel wrong to be setting up neighborhood residents who are really not going terribly fast, or causing any danger, just to get revenue. Or maybe not. Maybe the power trip is fully enjoyed, which is even sadder for his soul.
I think about the yelling cop from 18 years ago and a wave of sorrow passes through me for who I was and what I was going through at the time. I could not handle anyone being mean to me. Being mad at me. It’s still hard. But today I don’t crumble.
I start to “go there” with the victim thing. I don’t want to pay a fine. I am the victim of these cops and their unfair trap. Then I go somewhere else, where cops are total assholes. I breath that thought in, and then breath it right back out.
They are doing their jobs.
They are doing their jobs.
They are just doing their jobs.
I will not hate them.
I close my eyes and breathing, practice a mantra I’ve been working on.
My heart releases, my heart forgives.
My heart releases, my heart forgives.
My heart releases my heart forgives.
I think of Nelson Mandela who just made his transition. What he endured. I am getting a pinprick of attitude from these cops. And I likely was speeding. Mandela didn’t hate, even after being wrongly imprisoned for 26 years. I’m not going to hate anyone over a speeding ticket.
A spiritual teaching I value floats through my mind:
This is not happening to you. It is happening for you.
But why? Why do I need this? Why is this for me? What’s here to learn?
I remember me of 18 years ago.
I experience me right now in the present, with the calm heart. The me here, now, deciding not to be a victim. Deciding not to hate.
I am calm. So very calm. It’s strange, really. Take your time, young cop. Do what you’ve got to do. I’m good.
I have completely surrendered.
He comes back to my car and hands me the ticket. Hands me a flyer and tells me I can plead guilty or go to traffic school or plead not guilty, the whole nine yards. I look right at him, right though his sunglasses and into his eyes, with my calm.
“Be careful,” he says. I raise my eyebrow, because we both know this isn’t about careful. I was not a danger to society, and neither were any of the other cars lined up in the parking lot, awaiting their fate.
“Thank you,” I say, calmly.
He looks slightly puzzled, my reaction is unexpected. Then he walks away, politely stopping traffic so I can exit the lot.
Later, on the phone, I tell a friend about my ticket and, “I hate cops,” flies out of my mouth. But it’s hollow. It was just something to say. I can’t pull the hate up for trying.
This experience was for me. It helped me value where I’ve been, and where I am today.
It’s been some ride. I like where I am, and where I am headed (at no more than 25MPH).
On my morning commute, I was listening to a talk given by Eckhart Tolle. In it, he spoke of the concepts of patience and presence. He said if you are practicing patience, you are not being present. You are white knuckling through the now, to get somewhere else. If you are present, you do not need patience.
This felt important, and I rewound to hear it again. It applies to everything. The commute. Parenting. Standing in line. Holding a yoga pose. Not knowing where we will be a year from now. Anything I am waiting for.
Perhaps patience isn’t as virtuous as we’ve been led to believe.
I always find it. Always, always. No matter where we live there are places, where nature is honored and preserved. Today I “took the day off” and went to Morikami Museum and Japanese Gardens. It was lovely.
About 10 steps onto the path, I could feel my heart rate begin to settle down. It had been a very stressful week. Flashbacks of some of our most painful days-gone-by were front and center. Of course we are not in that exact place, but the PTSD part of my brain felt like we were and I had to do more work than you can imagine, on so many levels, to get us all on track. On top of that, all of us but HT were sick. Having to bring your A game when you are sick, is awful.
But anyway, the Japanese Gardens. So lovely. Driving in I was just appreciating so much that someone made this. Someone saved this. Someone, lots of someones got this going and people maintain it, and keep it up, and there are sacred places like this everywhere if you look for them.
The brochure answers the question, Why aren’t there signs on the plants to tell you what they are, etc.
The answer is they want the gardens to be restorative. Oh, think about that word.
They don’t want to trouble our minds with learning all the flora and fauna. They want you to chill out and just be there. Just be. Enjoy it. If you are someone who’s gotta know…there is a library on site where you can find out every little thing, but for the love of God, when you’re out in it, just be. And people do. Most of the people I crossed paths with today were reverent, quiet. The place kind of commands that.
Despite my attempt at empty-minded reverence, I couldn’t help but learn a little. I learned that bamboo can be very, very thick. And noisy. It creaks and moans. And sometimes it sounds like a rooster when wind causes the trees to rub against each other. It would be very scary to be in a bamboo forest at night.
I can’t ever come across a purple flower without thinking of The Color Purple:
“I think it pisses God off if you walk by the color purple in a field somewhere and don’t notice it.”
I don’t really think it pisses God off. I don’t think God ever gets mad at us or offended. That’s humans creating God in their own likeness. Period. But I love that book and I loved the movie. Whoopie Goldberg in pure brilliance. Watching her Celie grow from the most timid insecure thing into a being possessing dignity and self-love was so beautiful.
We could all stand to love ourselves more, couldn’t we? I know I could.
“You yourself, as much as anybody in the entire universe, deserve your love and affection.” – Buddha
The music of a waterfall is one of my favorite sounds.
Blessings, blessings, pouring down.
Every breath a chance at restoration.
Despite my tongue in cheek piece in The Imperfect Parent a few years back, I’d never cursed in front of my children for the first ten years of parenting, and even now it is a rare occurence. With Riley’s low frustration tolerance when she was little, I thought it would be a very bad idea for her to have those juicy words in her tool belt. That was my main motivation not to. I enjoy swearing. I do. It rolls off the tongue naturally for me, like an accent. The more relaxed I am around you, the more you’ll hear it. Guard down. Swearing up.
Riley does not swear and doesn’t feel she ever will. Seth is undecided. They still think “hell” and “damn” are potent words.
So anyway, the first day we had to be at Seth’s school I got lost. I was using my GPS, and had no physical map. The GPS hit a glitch, and kept taking me in circles, back and forth through a toll road, four times. A figure eight, with me forking over money each time. Lost and late. And hot, because the AC in our car was on its way to conking out completely.
Then, a car barreled down on me (aggressive drivers here are a topic for another day) and didn’t let me over to get off the exit I needed, and I screamed the F word. Twice.
This week whenever we get to that stretch of highway, the one where I need to get over and get off that tricky exit, Seth has been saying, “Stay left Mom! Stay left!” And I’ve been beating myself up over it because I feel like I traumatized him when I swore that day. Like, he’s terrified I’ll miss the exit again.
Oh I’m good at beating myself up. The best.
But yesterday, on my way to get the kids, 1.5 weeks in, I know the route. I wasn’t stressing. I’ve got this. And then I came upon the exit, and the guilt washed over me again, and then…. I remembered.
When I swore, when I said the F word twice, Riley, in the back seat, sucked in her breath, and in the next instant she took Seth’s hand and said, “Let’s pray for Mom.”
She didn’t say, “What a loser Mom is for cursing.”
She didn’t say, “I’m terrified of Mom.”
She did what I taught her. When you see someone lost and hurting and out of their mind, you hold space for them. You pray.
I taught her that. And if I taught her that, I must not be a loser.
I taught her that, but I also learned it from her. She was such a good and beautiful and sweet little girl, and then sometimes she was overwhelmed and out of her mind. Pushing back never helped. Being punitive never helped. Loving her did.
I loved her.
She loved me.
I love her.
She loves me.
Back and forth we go.
Figure eight, figure eight.
Borderline panic has been my baseline as of late. I barely know where I am. I am lost all the time, literally. I have not had to be in rush hour traffic on a major interstate in over a dozen years. BTW…My GPS is not God. My GPS is capable of really screwing me up sometimes. Just figuring out the traffic pattern in the pick-up line at school has my adrenals on DEFCON 5. My body can no longer determine what is truly a crises and what isn’t. It’s high alert, all the time. I know from previous experience this is typical moving stress and it will all calm down soon, when I get my bearings.
Yesterday driving Seth home from his terrific first day of school there was an accident on the Interstate. It took us 75 minutes to crawl home. I thought ahead to bring Seth a snack to eat and some water, thank goodness. The AC in my car conked out (as it is prone to do on only the hottest days) so it was bumper to bumper, super hot, and he’d had a long tiring first day. He started to feel carsick. I put Harry Potter on (book on CD) and told him to hold the ice pack I’d put in with his water against his skin. He did. He made it home. He bounced back quickly. I was a rock in the car, and felt wobbly when I got home.
Last week big issues came up with Riley’s orthodontia. We have to make some decisions that will affect her forever. Since being here I’ve had to deal with several blundering medical professionals who honestly don’t know any better. They know not what they do with their offhand remarks. They don’t think before speaking and scaring/scarring a child (or her mother).
My body is on high alert. High alert!
Where I am? What am I doing? How do I protect my kids? What if we do the wrong thing? What if moving was the wrong thing? My brain careens.
I spent four hours in the car yesterday, parenting duties, picking up forms and what not, and the traffic jam. In my mid-day travels I was listening to a book on my iPod when all of a sudden it switched to music I didn’t recognize, didn’t even know I had on there. It was nuns, singing. I know I must have bought it at some point, but don’t remember ever having played it. Which one of you recommended it? It isn’t something I would generally pick. And there it came on, right in the middle of my book, without even being asked.
The voices of the nuns instantly calmed me, and rather than trying to switch it and get back to the book, (I’m not good at fumbling around with electronics while driving) I let it go. And then after a few minutes, there was another Voice coming from within me and it said,
“You are doing just fine.”
It gave me a lump in my throat.
You are doing just fine.
You are doing just fine.
You are doing just fine.
The negative self-talk and worry can be relentless. But “things have a way of working out,” my grandmother winks in my mind. My spiritual mentor Barbara’s voice goes through my head, saying, “Darling, how is it you can’t see how good you are?”
How can we help each other remember this about ourselves?
The nuns sang me home and as I pulled into our driveway, in perfect timing, the chant/song ended with a beautiful, drawn out,
All is well. It’s all okay.
I’m doing just fine.
When Riley was three, I was attending a weekly meeting to discuss A Course in Miracles. I’d found the book a couple of years prior, and dabbled. I felt better every time I picked it up and read a little. It was at this challenging point in my life that I began studying it in earnest, and it got me through a very rough time and truly informed my spirituality. It still does.
There were anywhere from a dozen to two dozen who showed up at those meetings, and at least three of us (all women) had a kid on the spectrum, though I had not faced it yet. Two men had challenging sons. I don’t know if they were diagnosed with anything or not.
I would share my troubles, week after week, about this kid that screamed and cried for no reason, and finally one day, one of the women whose own son had already been through it said to me,
“Your doctor has not helped her. You need to take your head out of the sand. This kid sounds exactly like mine did, and she is hurting. You might want to see the doctor we see.”
Her son is a few years older than Riley and one for whom removing dairy and wheat had a transformative effect. He oozed pus out of his nose until his system cleared of it. He “woke up” from a foggy haze just getting those foods out of his system. They’d also done chelation and a bunch of other interventions that helped him even more. He was getting better, and she was transforming herself spiritually, working on deep forgiveness in every area of her life.
Our regular pediatrician had advised us to simply, “Tell Riley she’s making a big deal out of nothing.”
And, “Kids have tantrums, and it is up to you to set limits.”
He was clueless as to what we were really dealing with, what that little girl was living.
“She’s fine. She has advanced speech.”
At three and a half she was having panic attacks and had the self-care skills of an 18 month old, but whatever. She could talk.
“You need to take your head out of the sand.”
If it had been anyone else to tell me to “take my head out of the sand,” I would have been offended and might have turned in the opposite direction. It was shocking. It stung.
“You need to take your head out of the sand.”
But it opened a door.
I knew she was coming from a place of love. I knew she cared about me and my child. I knew her kid had gotten better. I knew he used to be “just like Riley.”
Sometimes, it’s just the thing we need to hear.
This is my grandmother, in 1918. On the back of the photo it says her swan dive was 99.9% perfect. She was 16 at the time. She would go on to marry. Live in NYC for a while. Move back to her home town. Have twin boys, then another boy, then after many years, well into her 40’s, (44,45?)a girl. My mother. My grandmother was my age when she started over with a new baby. When that baby was 6, she would leave her drunk carousing husband once and for all, and venture out on her own as a single mother, before single motherhood was a norm.
She had an eighth grade education but she was smart. She worked as a secretary at a lumber yard for over forty years, hardly ever getting a raise, but she was frugal and managed to get me and my sibs one good pair of school shoes every year and a couple of articles of clothing.
When we would arrive at her apartment, unexpected, on school nights or weekends, at 10PM, (bad nights when my mom didn’t want to leave us home with my father when she went off to work graveyard shift), my grandmother would fling the door open and exclaim,
She never made us feel like a burden.
She ate dandelions and pickled things, and loved to feed and watch birds. She was not a fan of cats, but learned to love our family dog, (secretly).
Recently, my sister and I discovered we both think of her whenever a red cardinal makes an appearance.
Soon after she retired at age 87, she moved in with my mother to become caretaker of my two preschool aged brothers, who had come along well after the rest of us, unexpectedly, a lot like my mother had. My father had left us, and did not pay support. My mom needed her to move in, to survive. Gramma cooked and did her best to clean, and did her best to raise the boys, though often she used shame as a method of keeping them in line. She meant well, and didn’t know better.
I was one of the closest people on earth to my grandmother. I was the last family member to see her before she died of congestive heart failure, staying with her in the ER until they got her settled into a room.
As we get ready to move south, and my whole world is up in the air, everything I think I believe has gone flying out the window, and I’ve been filled with panic at times. My faith in all things working out seems to have left me and I kind of see it off glinting in the distance somewhere, but I can’t quite reach it. Then my ego has a field day with this, a regular hootenanny, flagellating me, for being such a spiritual hypocrite. It isn’t enough to be afraid, but I then beat myself up over it too.
I know I don’t have life figured out. I often think I do, but my grandmother’s life serves as a reminder that I don’t. At my age, she was starting her life anew, just beginning with my mother. So much was ahead of her.
Now…tongue firmly in cheek here, ……at my age, she wouldn’t even meet me, one of the closest people on earth to her, for another 20 years! (Yes, my grandmother’s life was all about me). Can you imagine? I might not even meet one of the people who will be there with me holding my hand, the day I die, for another 20 years?
But much to my amazement, my grandmother had a whole life before me too. There are photos to prove it. My mother gave me a whole envelope, years after my grandmother died.
Look at the photo above. She dove! What did it feel like to feel so free in your body Gramma? You never talked about it! 99.9% perfect.
And look at this one. Who is this Mabel Rodman, obviously a BFF…that you never once mentioned?And when by God, did you ever wear high heels or pose flirtily hanging off a train? Gramma? I knew ye only in orthopedic shoes. And who took the pictures?
There are so many chapters in the story of a life.
We are about to start a new one. It feels so frightening. So much appears to be on the line. We’re losing so much money on the house, it’s like completely starting over financially.
But…. we’re, “going in the light that’s given us.” Truly, we are.
“Things have a way of working out.”
“God loves us.”
Beyond my fear, I know these things to be true.
I know it.
My gramma gave me that.
Yesterday I was so flat out exhausted. Todd knew it and offered to take over morning routine today so I could sleep. We’re good that way. I think it is one of the reasons our marriage is strong. We intuit when the other one needs help, validation, sleep. We do our best to give it to the other one. Whoever needs it most.
So I was attempting to sleep in, when my eyes popped open. Easter. It’s the Thursday before Easter, last day before break and my daughter goes to Catholic school. It’s her first year there.
Being a very sensitive child myself, I remember being traumatized by the story of the crucifixion. Why would God allow that to happen to His son? And, why would God give a crap about me if He didn’t bother to help Jesus? Riley is even more sensitive and certainly more literal than I was. We needed to talk. I hopped out of bed, rubbed my eyes and went into her very pink bedroom and shimmied under her covers. She stood there in her uniform, brushing her long hair in front of the full length mirror.
“Riley, they are going to be talking about Easter today, and they are going to be talking about the crucifixion and I want to offer you something to think about when you are hearing all of this.” She knows the crucifixion story, of course, but it hasn’t been hammered into her skull all her life. It’s been on the periphery. “God loves you” is mostly what she’s been told. It’s served her little sensitive Aspergian heart well over the last 12 years.
She stopped brushing and looked at me.
“The real story of Easter, the message of Jesus, is the resurrection. Beaten, tortured, Jesus said, Forgive them Father, for they know not what they do.”
She gives me a beautiful, soft smile.
I continue, “On the cross, Jesus had every reason to hate, but he didn’t. He saw only love. He saw only love in everyone, even those who ridiculed him. Even those who were actively killing him. He was so tapped into God, he knew so adamantly Who He Was that nothing could make him stop loving. And he said he wasn’t special. He said we all have this power inside us.”
My throat tightens. I am not into religion, but Jesus moves me. He does. The love.
“The real story of Easter is that love cannot be killed. That’s why we’re still talking about Jesus today. The real story is the resurrection.”
Riley tipped her head to the side and thought about this for a moment.
“Thank you for telling me that, Mom,” she said.
In the kitchen while eating breakfast she reiterated our conversation to Todd.
“Nothing can kill love.”
Now, I can rest.
Last Sunday we attended a healing service with Dr. Issam Nemeh. They let the people with children go first and thank God. As we sat listening to his opening talk, Riley became very agitated. She started to fidget in her seat and kind of stomp in her chair. I asked her to trade seats with Seth so she could be next to me and did what I could to calm her. I stroked her hair. I rubbed her arm. Two of the tools in my bag of tricks. Teary, she whispered, “I don’t know what’s wrong with me. I’m so tired.” She was up late the night before and daylight savings time had happened on top of that. Todd was working nights last week so he was very tired too.
I assured her, she was okay. Everything was okay. She calmed down, head on my shoulder.
“I’m sorry Mom.”
When we got up in the prayer line, Riley was first. Dr. Nemeh put his hands on her and asked me if she’d been in an accident. He said there was a problem with her spine. I told him no. No accident. He prayed over her and rearranged her shoulders and felt her spine and asked me again, “Are you sure she’s not had an injury?” I said, “Perhaps a birth injury?” And he nodded confirmation. That could be it. Riley tried to get out for 26 hours, ramming her head into my pelvis the whole time, before a c-section was performed. I told him she has anxiety and he said it is from her spine being out place. He prayed and prayed and he smiled and he told me what Todd has always known and what I have tried to know, he said, this girl is going to be fine.
Next, he prayed over me. I had all these things I wanted to tell him but I let it go and just accepted the prayer, let the love wash over me, Thy will be done. Help me be what I came here to be. I felt blank, and felt total peace and quickly it was done.
Seth was next. He put his hands on Seth’s shoulders and suddenly smiled a huge grin, feeling Seth’s energy. Seth tipped his head back and closed his eyes with a gentle smile of total surrender on his face. I meant to take off his hat, but I forgot, so there he was with his hat on. Totally loose. With his hands on Seth’s shoulders, Dr. Nemeh looked at Todd and said, “This is a very good boy.” He got who he was, instantly. It is hugely validating when someone sees, truly sees your child. There is something beautiful and gentle in Seth, and when other people are beautiful and gentle, they recognize it. Seth just stood there, eyes closed, face up, smiling….accepting the prayer. Hit me doctor, I’m all yours.
Then it was Todd’s turn. Dr. Nemeh prayed over him. Riley and Seth and I prayed for Todd too. God bless this good man. Help him be what he came here to be.
And then it was over. We were free to leave and though I would have loved to hang out in that sacred vibe all day, Todd had not slept yet. We needed to get him home and to bed.
It feels good to be prayed for.
It felt familiar, like a very old memory. The priest at the Episcopal church I attended as a child used to bless all the children individually when they accompanied their parents to the altar for communion. He took his time, and was very reverent and you felt he really cared.
It felt like that.
One week later, Seth still has tics, but they are not acute right now. Riley has not had much anxiety. In fact writing this, I can’t think of a moment in the last week where she had a hard time. Todd is content and sweet as ever. It would be lying to say I have not had a big energetic shift over the last week. I hadn’t thought about it ’til now, hadn’t made any connection to being prayed for, but there it is. I have recommitted to my book and did the thing I’ve been so scared to do my entire life. I asked for help. If that’s not a miracle I don’t know what is.
And the people I asked said, “Yes. We will help you. We’d be happy to. Of course.”
Today is the day!
Carrie Wilson Link’s long awaited book, Wil of God, is released.
“Wil of God is the story of a tightly wound special needs mother who comes undone, puts herself back together, and falls in love with her imperfect life.”
That’s a blurb from someone in the know.
Good blurb, right?
Oh, okay…it’s my blurb. I admit it.
I met Carrie at a writing workshop years ago. We bonded over our special needs parent status. Our children are very different and require completely different parenting but there was an immediate respect between us about the sacredness of our unexpected vocations.
I’ve had the honor to bear witness to the unfolding of Carrie’s story (at least the last seven years of it), and I’ve read her book in many of its phases. It is delightful. I am so very deeply and profoundly happy for her as Wil of God launches. It is a story that will lift you up, and make you better for having read it.
Carrie is a beautiful writer. A steadfast and devoted mother. A spiritual seeker. A vital thread in her community. She is a teacher to her core.
To paraphrase her son Wil, she is, “the right kind of woman.”
She’s also the right kind of friend.
May your book find it’s way into the hands of all who will appreciate it. May there be many, many, many who open to receive Wil of God.
*For more on Carrie and Wil of God, visit her blog, here.
Seth could not sleep last night.
When he re-entered school this year after being homeschooled for two, the biggest stress for him was not the academic work, not the social aspects of making new friends, but the fire and lock down drills. Just the drills.
We addressed his fears with the school staff. We’ve taken some measures to help him through. His teacher has a few tricks up her sleeve to help in the moment. He’s even seen a counselor who gave him calming techniques to use during drills, such was his anxiety. He was starting to handle them much better.
Then Friday happened at Sandy Hook Elementary.
So it was after 10:00 last night and he was still not asleep. I came in and laid down with him and ran my fingers through his hair.
“What if a lock-down happens and I’m in the bathroom and I’m locked out of my class?” Visions of being on his own in the hall with a gunman on the loose would not leave his mind.
I tried explaining that his chances of being harmed by an intruder at school were very very slim. “Seth, we have a better chance of winning the lottery,” I said. “Think of all the millions of school children in our country, who were not harmed on Friday. (I know that’s not really true, we were all harmed).
The numbers are too big. He can’t fathom what I am telling him.
So I tried a different tactic. “If that did happen, if a true lock-down happened and you weren’t in your class, you could hide under the stairs. Or you could run through the exit just past the stairwell. Don’t wait for a teacher’s permission. If you have an out, you take it. You go. You have inner guidance. You would know what to do.”
“But what if the gunman is in the stair well?”
Breathe, mama. I check in with my heart and ask for words.
“Seth. I believe we all choose when to come into this life, and when to exit. I believe those very special children, those brave teachers, on a soul level, came to change the world. I believe if it is your time to go, you will go, and no heroic measures will save you, and if it is not your time to go, no human act can change that. No one is more powerful than God.”
He hugged me.
“Because that’s what we’re talking about here, right? Fear of death.”
He nodded, “And fear of getting shot.”
I continued rubbing his hair, and we talked about the body’s adrenaline and the natural anesthesia that happens when we are in crises, and how, often times, people don’t even feel pain until hours after a traumatic event. Those children probably felt no pain. We talked about how when I hit a deer with my car, there was no time to feel fear. How time slowed down and it was all surreal. How our amazing bodies have ways to protect us from trauma. Physically and emotionally.
We talked about how we’re all going to die. Every one of us. Some people live long lives. Some people live short lives. All lives are meaningful. All of them perfect for what the soul wanted to accomplish. I believe this.
“But if I died, I’d never see you again,” he blinked his eyes hard, fighting back tears.
We talked about a guy I know, whose teenage son died. This man claimed he felt so close to his son now. Where there was friction between them, only love remained. He talked with his son all the time. He felt him, ever near.
That’s the thing about death, isn’t it? We don’t know, none of us really know. But truly, in my heart, I believe those children and those grown ups who were killed Friday, will never be far from their loved ones. Ever near. Yes.
We talked about love, and how nothing can take it away. Not even death. He is in his dad and his sister and me. We are in him. He is loved. God loves him. Love does not die.
Love is his only true safety.
This morning, our brave boy got out of the car, and hauled his backpack over his shoulder. He looked back at his sister and me in the car, and waved. Then did it again. And again. All the way down the long sidewalk and into the building, to school.
It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing the Specific Carb Diet consumes a lot of my life. We are eating really, really well. The kids are on board, Riley especially loves every single bit of anything I offer her to eat. Seth is less enthusiastic, but he is supportive and does not complain. After all, his health is the impetus for doing this, and he wants his PANDAS gone. His tics are a lot better. Not gone, but almost undetectable to anyone who doesn’t know him. Right now it’s a very soft, vocal throat clearing and that’s it. No body movements. He has a hard time getting his words out. It’s not a stutter over individual words, it’s a whole sentence stutter. Especially when he is excited to say something, it takes a long time to get a sentence out of his mouth. But, it was only a few months ago that his ribs and jaw ached from the constant clenching so he’s obviously doing much better.
We stopped his IVIG after a six month trial. He definitely did not get sick as much while he was getting it, but it was just a band-aid, not getting to the bottom of why his immune system is compromised and not actually healing it, which is the real goal here. He had two bad reactions, and it was traumatic for him and the whole IV thing is so invasive. It was worth a try. I have been spending every waking moment researching a new therapy that shows promise though I am hesitant to even mention it here because it is the cause for huge fights between the “bio-med” world and the “ND” world and I have been there, done that, and don’t need all the fury blasted my way.
I don’t fit neatly into either group. For the uninitiated, “Bio-med” people treat their kids medically and try to cure autism and tend to see it as a tragedy. The so called “ND” (neuro-diverse) people believe autism is just a different way of being and we should not attempt to “cure” it.
I believe the autism epidemic and the increase in other related auto-immune disorders are a result of a genetic pre-disposition, and environmental triggers with an overzealous vaccine schedule being a big player(though not the only player, for example our food supply is sick). We’re now up to one in 55 boys in the U.S. DID YOU GET THAT? (And if you are adamant that vaccines have nothing to do with it, I assume you have read very little on the subject, and that what you have read has been spoon fed to you by agencies that are bought and paid for by the pharmaceutical industry. A short list will be added to the end of this post so you can do more homework and be more informed if you choose to be). I believe that when kids with autism act out, it is because they are physically and emotionally hurting. I believe their behavior is trying to tell us something and is a call for help. I believe working on behavior without addressing the underlying reasons for the behavior is cruel. I tried my best to do my little part to educate people on this when Riley was little, and mostly people don’t want to hear it. I tired of bashing my head against the wall and stopped trying to convince anyone of anything. Rattling the cage was getting me nowhere and taking away from my ability to actually be present with my children. I am quite a sensitive person myself, and my constant anger was negatively affecting my health. I feared there would be nothing left of me to care for my kids if I didn’t back off. There is a new website called The Thinking Mom’s Revolution which has taken up the cause if you are interested in reading more from bio-med moms in the trenches. These women are full of heart.
While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”
I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts.
She did send me into panic attacks early on with her near constant screaming…which led us to seek out bio-med therapies to try to help her. You know that parable about the people on the roof in the flood and they keep refusing help because they are waiting for God to save them? They send away boats and helicopters etc., and they wind up drowning and after death ask God, “Why didn’t you help me?” and God’s all…. I sent you the ‘effing boat, and the helicopter,etc.. That’s right, my God can sling it like a sailor(we all make God in our own image). And She’s sent a lot of help which we’ve gratefully accepted. We’ve done a ton of bio-med therapies. Most have been helpful. Some miraculously so (Berard Auditory Training, methyl B12 injections).
When she was at her worst, I used to sit in Riley’s room at night, on a rocker, meditating as she slept, envisioning her in white light, calling all angels, “Help my child. Help her.” I would alternate between beseeching, and visualizing her well. I would talk to her soul-to-soul, “Riley, haven’t we had enough of this yet?”
And I heard, “We are healing together.” I had the distinct feeling she was holding out for me. She was transforming me. She was teaching me unconditional love. She was teaching me that people act out when they hurt. That goes for little bitties with autism. That goes for alcoholic parents. That goes for everyone. She was cracking open my heart.
Hearts are being cracked open all over the place at alarming rates, and it hurts. Transformation can be brutal.
I am not the same as I was before autism hit our family. It has been painful. And it has been a gift. AND, I will continue to do what I can to heal my children, and heal myself.
‘Cause when God sends a helicopter? You don’t have to ask me twice. I’m grabbing my family and hopping on.
Resources for you if you are interested in being more informed:
This is how it happens to me. I have an inkling. Some little voice, tapping at me. Do it. I try to talk myself out of it. A million reasons why it isn’t “the time.” Then I find myself on a mountain in Colorado taking a writing workshop for a week, no electricity, no phone. That was almost nine years ago and I have not stopped writing since.
So… I’ve been courting the idea of taking the 40 Days to Personal Revolution program at the yoga studio I attend. I know hardly anything about it. I think you’re supposed to cut out caffeine and sugar (shoot me now) and some other things. You are supposed to be more mindful. Yoga and meditation are involved. I bought the book a couple of months back. Skimmed it lightly. Set it down. It sat there on the night stand, under a pile of other books.
The thought would come to me, and I’d dismiss it. I could not justify the cost of the program, on top of the payment I am making for monthly unlimited yoga. (Back in November, I decided I was really ready to commit after taking yoga sporadically for years).
Then, last night, just a couple of hours before the 40 Days program was to start, I got an email, and it said, with monthly unlimited membership, the workshop is free.
So there I was last night sitting in a group of roughly 30-40 people, about to begin my “personal revolution.”
This should be interesting.
In a recent dedication ceremony at Agape International Spiritual Center in LA, the little girl being welcomed into the community is a RIOT. Her name is Lucia.
Click here, and just below the pause button you can drag the video to around 44 minutes to see her (though the whole service is worth watching).
What a miracle she is. How could she be born in Ethiopia, make it all the way to LA and steal the show at her tender age? How inspired are Rev. Michael Bernard Beckwith’s words! I watched this after posting about Riley advocating for herself in the dentist’s chair. How inspired I was by her, as were many of you who commented. When Rev. Michael said during the ceremony, “It takes a child to raise a village.” Yes indeed, I thought. It’s the kids who are raising us. Raising us to new levels of consciousness.
Lucia… baby girl who was dedicated last week at Agape, I don’t know you, but I love you.
What a powerful, powerful child. Your being has already greatly multiplied the love on the planet. And you can’t even be more than two.
“The moment of death
is also a moment of remembering.
I cannot tell you how often
you dear ones have left your bodies
and begun to laugh.”
-Emmanuel’s Book II (The Choice for Love)
Some of you who read this blog, probably read Jeneil Russell’s blog too. She writes beautifully of family life, autism, and faith, always faith. And she has this way of making you fall in love with whomever she loves. Her daughters Rhema and Hope. Her twin sister. Her husband. God.
Recently, Jeneil’s husband Brandon hi-jacked her blog and told her readers about a little booky she wrote a few years back called Sunburned Faces. Jeneil had never mentioned it on her blog! It is about a stint she served in Ethiopia, working as a volunteer in a medical clinic when she was barely twenty.
Jeneil is the rare writer who can whole heartedly, and steadfastly proclaim her faith, while never making anyone else feel wrong or threatened. She just knows what she knows. I subscribe to the now cliche’ “spiritual but not religious” notion, and I never feel judged or cast aside by Jeneil for not believing exactly as she does.
Sunburned Faces is amazing. First of all, she was twenty when she was writing it, and it is so well written! Secondly, she’s seen things most of us will never, ever see. I learned so much about that part of the world, just by Jeneil’s tiny peek into it. Also, because Jeneil wrote it, I fell in love with the characters in her book. One of them will be with me forever. I just know it. I do not say that lightly.
I read Sunburned Faces just before Christmas, and it was powerful to do so at that time. We have so much. We do. Many people in the world have so little. It was good to be reminded, to be mindful of our blessings. In the holiday rush, I’d have a little thought, “I wonder if we should have gotten the kids….this or that, or whatever,” and remember they lack for nothing. Absolutely nothing.
I’ll be doing a Q & A with Jeneil one day soon here.
So I have this idea for a new book. And it is of the “inspirational” variety, but it has a different spin than most inspirational books. And I really, really want to write it, but the thing is, I keep censoring myself. I keep feeling like an inspirational book ought to be more pious or something. Like someone writing an “inspirational” book maybe shouldn’t be as rough around the edges as I still am. Maybe someone writing an inspirational book shouldn’t even be thinking the F word, let alone writing it. So I keep edging my real voice out of it, for fear of what a potential audience might think of me. I hate when potential audiences look down their noses at me.
I wish I didn’t give a rip. I wish I could just feel safe, and not really care what others thought of me. I know of plenty of writers who are far more edgy than I am. My perceived edginess would be a joke in their world. I also know plenty of writers who play it safe. Some play it so safe I want to like their book, but something is missing. Technically it has all it’s supposed to, it’s followed the formula to a T, but somehow it’s a little…oh…squeaky clean and flat.
Maybe the safe writers really never say the F word in real life, so for them, it is legit to never write it. (And I’m not just talking about the F word, I’m talking about all the dark places we don’t want others to see).
I am not a mean person. Never is it my intention to hurt anyone. And yet, I feel somehow wrong, just for thinking what I think, and feeling what I feel. I’m guarded. You would not believe how much I self-censor, even on this blog. Can’t write that. Can’t write that. Can’t write that. I’m so afraid of offending anyone. This didn’t used to be the case. In my early blogging years I was so angry, I just didn’t care. Somehow over the years I’ve unconsciously begun to equate spirituality with not offending. But that feels like shrinking. And that can’t be right.
Writers especially get all up in arms over banned books. Censorship! Bad!
What about the books that never get written due to censorship in the writer’s own mind?
Potential audience? I’m asking you to move, and I’d like that space in my mind back. You’ve been squatting there too long.
You go be you.
I gotta be me.
Busy day, and now in the first lull, the the kids want to watch Glee, which means I have to sit there with them because there are parts I must forward through. Not really into it but it means the world to them. I strike a deal.
“I’ll watch Glee with you, but first we do a meditation.”
Riley groans. Seth shrugs compliance. I bring my computer into the living room and sit on the floor, Riley sits next to me, Seth on the pink couch.
I bring up iTunes and choose a Martha Beck mp3 on anxiety. Riley and I snuggle up on a pillow on the floor, she rests her head in my arm, then moves it around in non-verbal insistence I stroke her hair. She’s pushy like that. Sometimes it gets on my nerves. The mp3 starts and it is nice and relaxing, and soon Seth is tucked in my other arm, and Yippee is on my chest, and we’re all in a heap on the floor, and yes, I’m stroking her hair.
And I forget being annoyed about it, because how lucky am I? To have these kids? Ones who at 9 and 11 will indulge their mother and get on the floor and meditate with her and how awesome it is that we came from a place of almost constant anxiety and walking on egg shells for years and now we pretty much just delight in each other.
Soon we’re all breathing deep and slow, and I’m no longer “the mother” but just with them, and we are all in a place of stillness, no thought, no time, together.
Twenty minutes later, we’re watching Glee, and the day marches on.
But the meditation, it’s there. It’s in us.