Facebook Fatigue

I’ve been taking a break from Facebook. I really should have done this during the election season. It felt very toxic then. It is a relief not to be taking in the constant chatter of     hundreds.

It is a relief not to be formulating pithy status updates in my mind as I go about my activities of daily living.

It is a relief not to feel obligated to read, read, read every wonderful thing all the people I really like and respect and admire pass along.

It is a relief not to read how fear based and ignorant and totally anti WWJD? some of my so called Jesus loving FB community is.

It is a relief to read Harry Potter (book 6) to my babies. At 10 and 12 they still snuggle up, and we read.

It is a relief to find the time to meditate every day.

There are many good things about Facebook. I love keeping in touch with people from my life I otherwise wouldn’t really know anymore were it not for the forum. I love being able to share photos with family and friends. I love getting to know some folks better whom I otherwise wouldn’t really have known at all. I love when I’m feeling particularly isolated to post something and have people respond. Zowie! Instant gratification! You like me, you really “like” me. Scratch my ego…a little to the left….yeah…right there!

I love that more people read my blog when I share links to new posts over there.

And I’ll admit it. There are times I’m very uncomfortable being “temporarily deactivated.” I want a quick fix. I want to avoid something. I want to hop on the train and see what’s cooking!

But if I sit with it a bit, that feeling of missing something passes. The urgency subsides.

Exploring my own heart, listening to my own voice, is what seems to be needed at this time. For what? I’m not sure, but I feel like I’m making room.

Fifteen Years of Hot Toddiness

He’s happy because it’s our anniversary. That’s not actually why he was happy. He was stepping outside to shovel/snow blow after working from 8-4:30 and driving home in a blizzard. And yet, look….happy.

It’s a look of “If you’re going to take the picture, which there’s no way I’m stopping you, will you take the picture already, please, so I can head out the door, because I really, really need to clear our driveway, our sidewalk, and possibly the elderly man up the street’s driveway and sidewalk….but I love you so much I’ll never truly be mad at you, even when you annoy me.”

That’s what I’ve lived with for fifteen years, (and dated two long years before that….he kept me in an excruciating wait. One year dating, one year engagement, some rigid rule in his head). Who came up with all these rules?

If we had a nickel for every time he’s talked me off the ledge, we’d be wealthy by now. He’s pure good.

Our marriage has been through some trying times, but he’s always full-on there, willing to do the work to make it better. He is willing to stretch in places that are uncomfortable in order to come through on the other side.

There are things only he and I know. Dark scary places, and places of indescribable mind bending joy. He is the one person on earth who has seen it all with me. And I with him.

One time when I was single, I sat by the water in Georgetown at night, looking up at the sky, feeling lonely. It was a Friday night and things were happening. I’d just walked past a street performer doing flip after acrobatic flip after flip. The night was alive.

As I looked up at the sky in this city by myself, I felt a longing for someone I didn’t know. I’m tempted to think it was a knowing, a longing for Todd, the person who would love me.  The one I would share my life with. It’s as if, I could actually feel him out there, our destinies heading toward each other. I was young and believed another would actually complete me.

What I found is not that. I found a person who loves me. Who helps me to not to be so hard on myself. Who can’t do it for me, but who gives me the opportunity to complete myself. He has loved me so well. He has helped me heal. He has shown me what true love, unconditional love is.

He doesn’t waver. I’m so thankful.

Happy anniversary, Love. We’re just getting started. Amen.

Dull or Annoying?

Would you rather be considered annoying or dull? This was a question after dinner recently, when we were playing “Would You Rather?”

For some reason, the very question had us in stitches.

For the record, HT would rather be dull. I’d rather be annoying.

Of course there is no stopping anyone from being annoying and dull. So dull they are annoying.

I don’t know of dullness. There is never a dull moment around here.

For that, I am glad. Mostly.

Safety

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.

What a child with Asperger’s and her sibling would like you to know…

Yesterday I posted this on Facebook:

“There are reports coming out that the CT school shooter had Asperger’s. Please on behalf of my sweet girl and others like her, PLEASE correct and stand up to any ignorance you see on this. My child with Asperger’s would rather die herself than harm another soul.”

We told the kids about the shootings yesterday. They were obviously sad about it and had a lot of questions, most of them pertaining to their own safety, which is pretty normal for kids.

Today we talked with Riley (12) and Seth (10) about the shooter allegedly being diagnosed with Asperger’s. Riley immediately felt fear that people would think every person with Asperger’s was bad. Seth says he felt scared for Riley.

This is what Riley would like you to know:

“Note to everybody, I am not a bad person. Just because that man with Asperger’s shot those people doesn’t mean that I’m bad. Just like when the Japanese bombed Pearl Harbor everyone thought every Asian person was bad but they’re not. Consider what my mom said about this, and it’s true that I would rather die than hurt somebody.”

Seth says,

“Not all people with Asperger’s are bad, and most are really nice.  I know a lot of them that are really sweet. My sister is really nice and she would never harm anybody. I’ve never met a mean person with Asperger’s.”

We are so sorry for all the people who lost their loved ones.

Amen.

Fred Rogers Talks About Tragic Events in the News

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” To this day, especially in times of “disaster,” I remember my mother’s words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world.

-Fred Rogers

 

Some Things I Like About My Husband

1) He fixes my Kindle when it freezes up.

2) He often fills up my gas tank without me asking (I would never ask…I know how to fill up my own tank…but it is nice when he does it).

3)He gives me as much space as I need and I never feel him pining away for me when I’m holed out in my little office, but he’s happy to see me when I return.

4) He gets what I do. Truly gets it. Appreciates it. Validates it. I mostly don’t even know what the hell I do, but he does, and he gets it.

5) He loves our kids as much as I do. They are his #1 priority.

6) He’s very open minded.

7) He’s smart.

8. He thinks I’m smart.

9)He will eat pizza any time, as many days in a row as it needs to happen. And he’ll be happy about it.

10) He does not drink and is happy to be designated driver.

11) He does the garbage and the taxes and the lawn mowing.

12) He doesn’t notice, or blame me, if the house is a wreck.

13) He’s good with the one-liners.

14) He thinks I’m hilarious.

15) He’s a wicked hard worker, and he’s competent and efficient and responsible.

*This list was compiled after I was flooded with appreciation when HT fixed my Kindle. He’s magic like that. Amen.

Gratitude at Bedtime

He puts the bookmark in his book, and we say prayers and he tells me what he’s grateful for. Tucking Seth into bed, I look at his sweet face long and hard and this is what I tell him.

“Seth. If ever I have a hard day, or I feel down, or I feel like the world is out to get me, or my life sucks, all I have to do it look at you to know that isn’t true, because I got you for a kid.”

He smiles and we look into each other’s eyes for a long, long time. And I know that it might not be easy for him at times. I know there has not been enough of me to go around. And I know it doesn’t matter.

He knows. He is my heart.

Taking Perspective

Riley’s bus was late bringing her home yesterday. It’s actually a van. For some reason two vans had to be combined together. Kids that don’t usually ride together had to, and it was crowded. There was a little girl on the van. A little girl very much like Riley was as a little girl. She couldn’t deal with the change. She wanted to sit by someone particular and it didn’t work out the way she wanted it to. She was no doubt tired from a long day at school.

She melted.

For thirty solid minutes she screamed as if someone were killing her. Any attempts the other kids made to talk her through made it worse.

Riley got off the van and came into the house saying, “Mom. Dad. I think I know what you were going through when I was little.”

She told us the whole story.

“I felt sorry for her but I really just wanted her to shut up. I was getting a headache.”

We talked about how it must have felt for the little girl to have everything be different, and to be tired and confused. To feel crowded and upset. To have people keep trying to talk to her when she just needed space.

“I’m so sorry I put you through that,” she said.

We told her she had nothing to apologize about. She was little and she didn’t feel good. And yes, sometimes it was maddening, but we understood, and we knew she was doing her best. We knew what a good kid she was, how sweet she was, how hard she always tries. And yes, on rare occasion because we ourselves have been limited, or tired, or confused and overwhelmed, we might not have handled it as well as we could have, but we have loved her every second of her life even if we weren’t dealing well with her at the time.

It was interesting to see her apply such perspective. It made me feel good. Not for her to feel guilty, but for her to acknowledge how the screaming child affected her nervous system, and to then place herself in our shoes.

I have carried so much guilt over times when I have not handled Riley’s meltdowns well. Most of the time I have and do handle things well, but sometimes I have not. And I fear those are going to be the things she will remember. Interestingly HT carries no such guilt. Just last week I pulled into the driveway and heard him screaming at her (another homework battle)all the way from outside in the driveway. He was over it in an hour. He’d let it go.

Later I asked him, not accusingly but just curiously…how that works.

“You’re okay with the fact that you were screaming at her?”

He shrugged, “I don’t like that I screamed at her, but she was exasperating.”

End of story.

That’s the kind of thing I will kick myself over for months or even years. I don’t get it. Is it a difference between men and women? Is it just me and my crazy desire to do everything, including motherhood perfectly? Or is he a rat bastard? Or does he merely have a healthier acceptance of his being human and all?

Anyway…back to Riley. This ability to step into our shoes, even for thirty minutes, makes me hopeful. It makes me feel like she will look back at her childhood and understand her parents in all their imperfection.

And love us anyway.

Brain on Fire

I recently read Brain on Fire:My Month of Madness by Susannah Cahalan. It is about a young woman working as a reporter in NYC, who suddenly shows signs of psychosis. She spends over three weeks in the hospital experiencing mania, paranoia, hallucinations, catotonia, etc.

It turns out she had something called Anti-NMDA receptor encephalitis. An auto-immune condition which put her brain under attack by her own body. It was treated with IVIG, plasmapheresis and steroids.

I read this with particular interest because of Seth and his PANDAS (which is now being called PANS because it seems strep isn’t the only trigger for many children).

The doctor that initially treated Susannah Cahalan accused the 24 year old of partying too much and suffering from alcohol withdrawal, (despite the fact that she wasn’t an alcoholic). He couldn’t figure it out, so he came up with that little diagnosis.

The schizophrenia label was tossed around.

She was in really bad shape and could have very easily been permanently institutionalized. She could have easily died from her condition if a different, brilliant doctor had not taken interest in her case.

The story made my heart break for the countless people with various conditions who are misdiagnosed. It made my heart break for people for whom science has not figured things out yet.

Cahalan’s story brought into focus how truly fragile our bodies are, but also how miraculously resilient.

Her story was told from a reporter’s viewpoint, piecing together details from her month of madness from medical records, family notes, interviews with doctors and friends, etc.

It was a gripping read. There were so many parallels between what she experienced and what autistic people likely experience. For example Cahalan is able to describe the experience of acute sensory bombardment from the inside. She is able to describe the social impairment many with autism face, from the inside.

Read more about the connection between Anti-NMDA receptor encephalitis and autism here. 

As a mother continually searching for answers, this book made me want to never give up.