Domestic Violence Awareness Month

In the past, I've shared the story of losing my mother in law to domestic violence.  Every October--every day--I want her murder to serve a purpose.  I want some good to come from losing her.  I want other abused women, children, and even men to heed the warnings from her death.  I want someone to find hope.  I know she would too.  This world still needs you.  Please, you are worth leaving your abuser.  You deserve better.  Please tell a friend, family, doctor, hairdresser, the police, social services--anyone-- make a safety plan, and get out today.   

This year though, I've decided to share my own story.  

Shawn and I began dating in high school, but there was someone else before him. 

I was a child--a young teenager--and he was a man, an older high schooler.  He graduated from high school (during our relationship) before I moved up to high school myself.  We met on the school bus we rode together (only one of the many reasons I'm thoroughly against bus sharing among schools now, as a mom--yes, kids could always find another way, but the public school system should not be complicit in it), and I hid our relationship, knowing full well it was wrong, as long as I could.  Mind you, I did not hide the relationship because of the abuse.  I hid it because of the age difference (which was a form of abuse in its own rite).  My friends knew, and even covered for me, often.  One friend did threaten to tell her mom if I didn't tell mine... She quickly became no longer a friend.  I snuck him into my home when my parents were gone, conspired, lied about the many phone calls and committed so many other wrongs.  It was wildly uncharacteristic of me, the golden child, the good child, but I loved the feeling of getting away with something.  I laughed at my parents' complete ignorance.  During a time when my parents were utterly consumed by my sister and her problems, I also loved the feeling--the idea--of someone loving me and paying attention to me.  Then there were the bragging rights that came from being with an 'older boy.'  I didn't have any experience with boys and craved the attention--and status--of a boyfriend.  I had low self esteem and found my worth in relationships, which made me vulnerable.  He made me feel desirable and wanted.  I desperately wanted to be attractive to a boy.  Instead, my self esteem only plummeted further.

I knew it was wrong, but I don't think I ever comprehended just how wrong it was, not until a few years later.  At that point, it was too late and I was too embarrassed.  I'd professed my undying love for this man--I knew there'd be an I told you so, you wanted this relationship, you were not abused, or some other form of ridicule, especially from my mother.  I did not know how to call it abuse.  Gee Mom, I wonder why?

Want to know something funny?  My parents didn't believe me about the abuse.  My father never really said one way or the other.  My mother even argued with me when I came clean during my senior year of high school, laughing and saying, "You never had a black eye!"  I can remember everything about that day—I’d written an essay for school, detailing the abuse—which I asked her to read.  Standing in the kitchen, she rolled her eyes and was completely exasperated with my 'lies.'  My mother was always quick to share her theory that abuse victims can't see when others are being abused because it's normalized behavior for them.  I have a similar theory about abusers.  No wonder she couldn't see the abuse.  It's a real blow to your self image and self esteem when your mother doesn't believe you.  Parents, please believe your kids.  They need to know you're their safe person.  I stopped talking about it after that because if my own mother didn't believe me, how could I expect anyone else to?  Honestly, I don't share my story very often because she didn't believe me.

There was a wonderful honeymoon phase--he doted on me, wrote love notes, kissed me, showered me with compliments, showed up to my hockey games.  After my parents found out, he started going to church, coming to Sunday dinners, and spending holidays with us.  He showed up to my therapy appointments and sat in the waiting room.  Suddenly, I was with him all seven days a week, one way or another, and I had no escape.  There was no room to breathe.  I really thought I was in love and I dreamed about our wedding.  I listened to love songs and ballads, always picturing him, envisioning our future together.  I was a 14 year old girl.  He was a 19/20 year old man.

I didn’t get truly scared and realize how wrong it was, not when the emotional abuse started.  He would yell, give me the silent treatment, withhold affection and gaslight me into believing I was imagining it all.  He behaved passive aggressively.  There was name calling, dangerous 'pranks' and cruel jokes at my expense.  He controlled everything about me, from my hair cut/style, to my friends, isolating me from them.  He didn’t like when I talked to anyone, but in particular, other boys/men.  I romanticized--fantasized--so much of our relationship.  I played a lot of pretend in my own head.  I rationalized and normalized everything to myself (it wasn't as much of a stretch as it might seem, as I'd already learned abuse somewhere else... Thanks, Mom and Dad).  The first time I tried to break up with him, he threatened to kill himself.  It scared me enough that I took him back.  He said he couldn't, and didn't want to live without me.  

I didn't get truly scared and realize how wrong it was, not when the physical abuse started.  I started lying to my friends.  I learned how to cover a black eye with make up.  I stopped wearing shorts.  I hoped the marks on my arms and legs weren't noticeable.  I hoped no one noticed when we changed for gym, and I started wearing sweatpants instead of the school-issued shorts.  I learned how to concoct believable lies.

I didn't get truly scared and realize how wrong our relationship was until he started pushing me for sex when I was 16.  He wouldn't take no for an answer and was forceful with it.  It did not matter that I was not ready.  I pushed back, resisting, because I did not want to 'end up' like my sister.  That's when I knew I had to get out.  One morning I woke up and and I saw a glimpse of my future with him.  I realized this would not be just the rest of my life, but it would only get worse.  There wouldn't be college, only babies and misery.  I had plans for my future, and while they'd included him for the longest time, when I looked ahead, I only saw despair.  I knew I did not want to bring children into that.  When I finally developed my spine, breaking up with him for good, he threatened suicide again.  That time, I told him, "Okey-dokey!"  That said, he still did not make it easy to leave him.  He didn't disappear from my life overnight.  He stalked me for weeks, called several times a day, and left gifts and notes at my house, all of which I hid from my parents.  I was scared to be alone, but equally scared to tell them.

He always apologized, and I always believed him.  I knew I'd provoked him, and I deserved whatever he dished out.  If only I were a better girlfriend.  I smoothed things over, I promised I'd do better the next time, I promised there wouldn't be a next time.  After all, he had to put up with so much from me, and he really did love me more than I deserved.  I didn't even deserve him, and yet, he stayed by my side through all of my horrible, disrespectful, rude behavior. With the way I behaved, I was lucky he stayed with me because certainly, no one else would.

I honestly can't remember how my parents found out.  I do remember wanting--needing--my father to be the protective father figure I craved; instead, he barely reacted, and my mother flipped her lid.  She was positively livid--which was to be expected, but not in the ways you would think.  They allowed us to continue to see each other, however.  I don't know if they were exhausted from dealing with my sister, if they figured they'd tried to forbid my sister from doing the many things she did and it backfired, so they decided on a different approach with me, I really don't know what their thought process was.  I was allowed on dates with him (I was 16 by then), he was allowed over to the house when my parents were home, and I was allowed over to his house when his family was home.

He was so charismatic.  He could've charmed a snake.  Everyone in my family loved him.  He was Dr Jeckyl and Mr Hyde.  My bonus grandfather even gave this man his blessing, telling me I’d found a good man.  He played with my sister’s kids, brought flowers to my mother and did simple chores around the house for her, attempted to find common ground with my father.  He had everyone fooled. 

I think, the only person we did not have fooled, our family in entirety, was my youth leader at church.  I remember the day she cornered me before church started, telling me she knew what was going on in our house.  My sister had several babies already, having started at 17 and marrying, and I was dating a man--both of us were desperate for attention and approval from the men.  At the time, I coldly replied, "You have no idea what you're talking about."  I was determined to fiercely defend and protect my father, and her accusation made me angry.   Fortunately for me, she was spot-on and knew exactly what she was talking about.  Having broken up with Shawn freshman and sophomore years of college, I continued to seek out emotionally unavailable men who took advantage of me (which I allowed), still desperate for that affection and attention.  Shawn had treated me well--giving me healthy affection and attention--and I understand now that scared the life out of me.  I had no idea how to react to it, so I sabotaged our relationship.  We talk about it sometimes, and he says there were parts of me he didn't understand until we married, when he was suddenly up close and personal with my parents.  Yes, my church leader knew more than I did.  As a mom, with the wisdom of an extra 30 years behind me and a husband who loves me, I understand why she said what she did, as well as why she acted.  I would do the exact same thing now.  A few weeks ago, I tracked her down through social media and thanked her.    

Did his parents know about us?  Yes.  From the beginning.  So did his younger brothers who were both much closer to my age.  He himself was closer to my sister's age.  Did they have any idea what their son was capable of?  I honestly don't know.  I do know his mother advised him to not get me pregnant.  I remember hearing her say that and being absolutely horrified that's what she thought of me.  Looking back now, I realize she was looking through the lens as his mother, watching this young girl with her son.  While most people would raise at eyebrow at him for his behavior, she raised hers at me.

I was hospitalized for an intractable migraine my senior year of high school.  He was working at the hospital, but I didn't know it.  Waking up to his face, alone in my hospital room, was terrifying.  He decided to hang out with me and my parents after his shift and I felt like a trapped animal.  All those old feelings came rushing back and horrified me.  I was terrified he'd come back when I was alone.  Shortly after that, my niece needed bloodwork and I can't even begin to tell you how I felt when they told me he'd been the one drawing her blood.  I hadn't talked about the abuse yet, and I had such fear he would retaliate using her.  Years later, I ran into him at the grocery store when Avery was a toddler--literally turned the corner and came face to face with him.  I immediately regressed to that scared teenager, speechless, breaking out in a cold sweat, scared and shaking.  My heart felt like it would pound right out of my chest, even as my chest was feeling tighter and tighter.  I think I finally mumbled, "Excuse me," then I grabbed Avery, left my cart in the middle of the aisle, and went directly home.  I did not want to have to make nice with him, pretend to be able to carry on a conversation.  I did not want him even looking at my child, or knowing anything about me.  So many years later, I hated realizing he still had that grip on me.  I felt weak and stupid.  But to be able to go home to Shawn, I realized I was safe.

I purposely did not share all the sordid details here (notice I've not used his name; he's simply my 'abuser').  I don't want to focus on what he did, but rather, what I finally did--and you can too.  LEAVE.  I know it's not easy, but you can do this.  I want my story to be a cautionary one about hope and perseverance.  Do you feel as though you were reading an autobiography?  Thirty years and a wonderful, healthy marriage later, I do still have trust issues.  I still struggle at times.  What happened, that relationship, such as it was, never should have happened.  I had no business being with him, and my parents should have never allowed it.  His shouldn't have either, nor his parents.  There are names for people who prey upon those younger than them.  I know there is a fine line between disciplining teens and their willingness to rebel, but this never should have been allowed to progress as far as it did.  I would never allow it for my own child.  I'm not angry anymore; anger takes too much energy.  He took a few years of my life--he doesn't deserve the rest of it.  I do not want to dwell on it, as it's long gone.  I want to only share it with those who need  I have too much good now to allow his shadow to continue to mar my life.  He does not deserve continued headspace.

If you or someone you love is being abused, please contact The National Domestic Violence Hotline to make a plan to leave, to be supported, to look for counseling and other forms of help.  They can be found online, https://www.thehotline.org (you can use their online chat feature), reached through their hotline, 1.800.799.SAFE (7233), or you can text, "START" to 88788.  Their website also features instructions for erasing them from your search history.  Please, please, PLEASE, you deserve better.  You deserve to be healthy and loved.  Please contact your church, your family, your friends--and tell them, "I'm ready to leave." You are loved.

The Fire: A Distraught Mama's Perspective

*This post was written and published with permission.  Noah and M reserve the right to write their story in their own words, or a follow up, which I will publish if they choose.  This is written from my perspective as Noah's mom, living in a different state, unable to be with him.

As I'm typing this post, my eyes keep wandering to a sticker on my computer: "and if not, He is still Good."  He is still God.  He is still Abba.  Tonight, I am immensely grateful for this.  For Him.  For the safety of my child and his girlfriend.  MY childREN.

I have yet to stop whispering quiet thank you's to Abba.

Early this morning*--3 am--brought a phone call no one ever wants to receive, especially parents.  Make sure your kids know no matter the time, no matter their age, no matter how close or far apart you are, they can always, ALWAYS call.  The absolute terror I felt seeing his name on Shawn's Caller ID.  I knew it was bad, not just because of the time, but because he called only Shawn and it wasn't a FaceTime call.  The only reason I heard Shawn's phone ring was because I was battling insomnia.  Did my subconscious sense something?

I never want a phone call like that one ever again.

"M, the boys** and I are safe, but our apartment is on fire."

The distress in my son's voice.  

Groggy from sleep, Noah's words jolted us wide awake.  

Practically yelling at Shawn, WHAT HAPPENED WHAT IS WRONG ARE THEY OKAY, yelling at him to put the phone on speaker, my panic rising.

We couldn't get the details fast enough for our own relief, but did our best to give Noah the patience he needed from us so he could get his thoughts collected and words out.

I've never wanted to be able to reach through a phone so badly. 

Today I'm very grateful, unable to describe how relieved I am, and I cannot put into words the ache I feel from being so far from my son and M during this time. 

I need to see them for myself.  I need to hold them.  I need to hug them hard.

If I could've hopped on a plane this morning at 3 am, I would be there by now.  I need to be with my kids.  That far away, my kids need me to be with them.  That far away, I need them to be with me.  

I kept it together while we talked him through it early this morning, but lost it as we hung up with each other, as I laid in bed wondering how I was supposed to go back to sleep after that (I didn't).  More tears made their way out when we found the videos of the active fire, and again later, when Noah sent us photos of the apartment building (no, I will not be posting those).  My son walked away from that.  It's a miracle everyone--anyone--walked away from it.  It all feels very surreal.  They all made it out as the third floor collapsed into the second, as the second story stairwell collapsed into the first story stairwell.  Seeing my son so defeated killed me, and seeing M's face puffy from crying broke me.  I can't fix this for them.  I can't make this better.  Every time I see the photos and videos and hear his words in my mind, I get that hitch in my chest and tears push forward from the back of my eyes.  

I have to keep repeating to myself:  They're okay.  They're safe.  They made it out okay.  Everyone is safe.  They're alive.  They're okay.

Just when I thought I'd cried everything I had inside me, the littles approached us with their savings.  Having overheard us talking about what Noah and M need, how much, how we're getting it to them, and so on, they'd run upstairs and grabbed their piggy banks, asking us to send their money to Noah and M.  Avery is very concerned--his heightened anxiety has sent my own anxiety through the roof--and Ezra keeps repeating, "At least they're safe, that's what matters!" (This sounds like a perfectly normal, appropriate thing to say, but please understand, as an autistic--as my 'most' autistic child--he's repeating what he hears us say, so he has very little concept of what happened and what all of this means.)

I can't fix this for them.  There's no magic wand, no snapping of fingers, no spell to chant to make this all go away.  All of this is far beyond my control, and I really don't deal well with beyond-my-control situations on a good day, so imagine how this is going right now.  This is one of those times I have to trust Noah and M to handle this on their own (they're doing a fantastic job--I really admire the way they're trudging forward and dealing with this, I would've folded into a pill bug in the corner at this point, but I'm seeing so much in Noah the man he's become), and trust the insurance company, Red Cross and other helpers to do their jobs and fill my role.  I really admire Noah and M for their courage, the way they’ve forged ahead, handled the situation.  I know they’ve (rightfully so) crumpled a few times.  But they’re amazing.  Even if I was there, I still wouldn’t be able to fix it.  I hate this for them, but damn, they’re amazing.  I’m so proud of them.

Talking with one of my best friends the next day, I lamented how just when you think your kids can't possibly scare you anymore than the last incident, they up the ante--or life does, at least.  With Noah, we've been through a knife fight on a missions trip, a school lockdown his freshman year due to a student with gun, firefighting, moving as far as he did, and now this.  The word terrified doesn't even begin to cover it.  One night when Noah was at the station, a deputy showed up on our doorstep at 10 pm with a jury summons, but the fear I immediately felt having a deputy at my home so late was beyond compare.  When he told us why he was here and why so late, I nearly leapt at him: "JURY DUTY????  DO YOU HAVE ANY IDEA WHAT YOU JUST PUT ME THROUGH IN THE PAST 30 SECONDS???"  He had to deliver a second summons a week later; that time he started out with, "Your son is fine, I'm just giving him more paperwork."  It's very possible I told him "stop doing this to me!"  Noah has officially met his allowance of hair-raising, gray-hair-causing, ulcer-inducing events.  Someone be sure to tell him that, okay?

The important things:

They are safe, as are the other 62 residents.  All pets except for one hamster have been accounted for (that does sadden me, as it was most likely a child's pet), including a kitty the firefighters found during their search and salvage.  The poor guy escaped his owner's arms in his panic the night of the fire; he spent a day on oxygen in critical condition, but he's recovering well and his people have him back.  Noah and M made it out with the boys, and the clothes on their backs and not much else (Noah doesn't have even a pair of socks right now).  They still have Noah's computer and all of their tools, so they are able to return to work easily enough, and Noah won't miss his classes.  M grabbed Noah's baby blanket, among other items of importance (idiotically, the first thing I blurted out to Shawn was "He lost his blankie," which made me cry, so knowing he still has it made me cry harder), including the watch we gave him for his 21st birthday, which he wants to turn into a heirloom for their children.

I see the way she loves him and that makes me love her more.  She 'gets' him.  Like we told them, if they can survive this together, they'll be able to withstand anything.  But damn, what a way to begin life together.  

This could’ve been so much worse and I’m trying to not dwell on that.  They had her parents’ home to go to after the fire.  They’re safe and healthy.  The boys are safe and healthy.  All the residents, including a beta fish, a cat who was found hiding in a washing machine, and a dog locked in a crate (please be kind to this owner--please remember this was beyond her control and she would never purposely put her dog in harm's way) who survived the fire, are safe and healthy.  Help is pouring in left and right.  There might be a few things they’re able to recover.  Noah’s insurance agent has been phenomenal.  The important thing is it wasn’t worse. 

You want to know the dumb, ironic, thank-you-baby-Jesus, hug-her-sister-for-me thing?  They are alive because of a fight M had with one of her sisters.  Noah and M were still up talking about it when they heard a big boom of thunder, saw the lightning, and the vent in their room sparked.  Then they realized they saw and smelled smoke, then saw it billowing up from the roof.  Their smoke alarms didn't go off; if they'd been asleep they might... I can't even say the words.  I won't.  They might not have heard the third floor alarms.  They might not have seen the spark in their vent.  They might not have investigated the boom, alarms and spark, which means they might not have seen the smoke from the roof.  Most of the other residents were already asleep as Noah and M went about floor to floor, banging on doors to get people out.  Saved by a fight, of all things.  The smoke detectors on their floor weren't working, the sprinklers failed, and rumor has it, the hydrants didn't have water, nor was the building up to code, despite having passed inspection.  A brand new apartment building my son chose because he thought it would be safest, nearly became a death trap. 

Each time I'm tempted to entertain the 'what ifs', I'm reminded to look for the helpers:  Residents from other buildings left their own beds in that wee hour to check on everyone and offer clothing, extra rooms, extra beds, couches and transportation to hotels, friends' homes, wherever, and anything else that was needed.  My son, M and the boys have a safe place to stay while they wait on a new apartment, they have food in their bellies, and they're still able to work.  They both have renter's insurance, so even though they lost everything, it will be replaced.  My children cannot be.  The Red Cross and a local thrift store have stepped in to provide necessities and help with what is needed.  Furniture has been donated to the victims.  I have a friend out there who offered to help out how she could.  Others are stepping in and offering help, filling gaps.  As the firefighters began the search and salvage portion of the job, they've been able to return some belongings to residents.  An outpouring of love and concern from our friends, all of them immediately asking, "What do they need?"  My niece's first question: "Are you okay?  Are you ok after hearing this?  I'm on my way over, I don't care it's 4 am!"  

They're okay.  They're safe.  They made it out okay.  Everyone is safe.  They're alive.  They're okay.

*the fire was three weeks ago

**the 'boys' are cats

Perspective: Finding Humor and Gratitude in the Fear and the Chaos

I'll be honest--adjusting to our new epileptic normal has been neither smooth nor easy.  

This diagnosis isn't just about me.  It affects my family, my friends and potentially, even complete strangers.  We have to double and triple think any activity we want to do (Am I too tired?  Will I be too tired after?  Is it seizure-safe?  Will we have access to emergency services should I need them?), we have to double and triple think leaving me alone in the house with and without the kids, or in a store or at an activity.  Epilepsy has introduced us to the local police department and other emergency services.  It has also introduced me to a wealth of new friends, all of them ready to support me and my family (as it turns out, people with epilepsy are just as awesome as the duck people we've met through the internet).  As that family, we've hit a few bumps in the road, had a few deep why us moments, had snafus with the arranging and rearranging--and rearranging again--of Shawn's work schedule to fit our (my) appointment schedules and school schedules, and I've been a *little* overwhelmed at times with Avery's intense attention.  We're all tired, the exhausted kind of tired that sleep doesn't solve, from constantly being on guard.  I'm not getting out as much as I'm used to, and when I do, it's usually only to see a doctor.  Shawn does try to make sure I get out, but I'm beholden to his (very necessary) schedule.  

Right now, our world revolves around my seizures.  It's not how any of us want it, it's not how any of us imagined our lives, but it's just how it is.  We do our best to just stay in orbit most days and occasionally leave Planet Epilepsy when it's safe.  So much is beyond my control and I just don't handle that well.

I cannot shower alone, go to the bathroom alone (I mean, I've always had an audience, including a duck, I'm a mom after all--but now it's a safety issue), shop alone, sit alone, sleep alone.  Sigh.  Avery's anxiety reaches a fever pitch when Shawn is at work, so my niece frequently comes over to 'babysit'.  A few weeks ago I did reach the end of my rope; upon arriving at Target, I told my people to take their own cart, go in a different direction and don't even look at me if we passed each other: "You don't know me, I don't know you.  LEAVE. ME. ALONE."  Avery panicked most of that hour, but I needed that time away from them to do my own thing.  I needed to be Amy, not The Epileptic.  I am relieved to be starting our school routine, as Avery has something else on which to focus and obsess.

For myself, I think the most difficult part (aside from the total loss of independence) is watching my normally stalwart, level-headed, solid-as-a-rock husband become completely unglued--while trying to maintain his cool for me and the kids.  But I know he's scared.  And that scares me.  My husband doesn't get scared.  I will never forget the look on his face as the nurse ushered him out of the OR with newborn Ezra, and it was the same look as I came out of my last seizure.  He's not just scared, he's panic-stricken.  We've thought about videoing at least one seizure so I know what they look like, but Shawn admitted he can't do it, and I don't think I could watch it anyway.

I do have fears of my own, especially knowing how scared Shawn is.  My fears range from the typical ones, such as losing control of my bladder or bowels, especially in public (knock on wood, not yet!), or how a migraine,  sleepless night or particularly stressful day could lead to a seizure (all three together are certain to), or having a public seizure (not sure how I can have one more public than in the middle of the road, but I'm sure I'd find a way); to the moderately frightening, such as hitting my head or otherwise injuring myself or someone else; to the absolutely terrifying, like not regaining consciousness, not starting breathing again on my own (or at all), injuring myself in a life altering manner, hurting someone else or some other permanent circumstance.  I have children to raise, my boys' future spouses and perhaps even grandchildren, to meet.  I have responsibilities.  I have things I love to do, want to do, need to do.  I have people I love.  I'm afraid of losing, quite literally, my mind, as my memory is nearly nonexistent and we've moved beyond Words With Amy to Sentences With Amy.  Shawn makes me work for it though, but only if it's just us; otherwise, he helps, as to not allow me to feel embarrassed.  I'm afraid of losing myself.

So we're working on perspectives.

One of the many things I learned about while working at the grief center was Wallowing Days.  Everyone needs a Wallowing Day, no matter what you're going through.  Yes, one Wallowing Day can often turn into several--but the important thing is to get stuck there.  You just can't allow your Wallowing Day to turn into a Wallowing Life.  I've been there, done that, don't care to return.

Yes, we're working on perspectives.  We're trying to find the humor and the gratitude in our new normal.

I'm allowing everyone to laugh at some of the things I do and say coming out of seizures (apparently I'm rather belligerent and argumentative, convinced I did not just seize, even though I obviously just did, and Shawn is the most trustworthy person I know--but it's weird coming to with complete strangers in my bedroom because he calls rescue nearly every time, even though he knows he doesn't have to--he's run seizure calls, but I suppose it's different when it's your own wife), and we frequently take bets on the most inconvenient time for one to happen.  When I do think one is likely to happen though, I quietly tell Shawn, then we both quickly and quietly leave the room.  The kids don't need to see anymore than they already have.  Want to talk humor?  Autocorrect insisted I meant "elliptical" in my first paragraph, not "epileptic".  Yeahhhhhh, it's funny.  Go ahead and laugh.  I give you permission!

We have so much to be grateful for right now, even in the chaos.  For starters, Avery's seizure journey is over, but because of it, I'm able to have the understanding he needs because I remember the fear I felt then.  Shawn's company, notoriously not an employee friendly company, is working with him so he's able to be around the house more.  We have friends making themselves available to help with scheduling, travel and appointments.  A co-op director who didn't run screaming when I trained her in seizure first aid and how to use my rescue med.  I've taken back over the grocery shopping now that our local stores finally deliver, so that takes a lot of stress off Shawn.  I'm trying to regain some of my strength and general life-giving energy through baking, especially bread.  It feels so good to have my fingers back in dough, working it, shaping it, kneading it.  It's therapy for my soul.  I do what I can on the days I can, knowing I most likely won't be of much use the following day.  But we're grateful for the good days I do have.  And the smell of baking bread.  We can have our fears, but cannot allow them to rule our lives.

We do still have so much to be thankful for.  This doesn't mean we don't have hard days, it doesn't mean we can't admit to those days--gratitude and difficult don't cancel one another out.  I'm not here to tell you otherwise or blow sunshine up your skirt.  If you know me, you know I'm no Pollyanna.  But my kids are watching how I deal with this.  I'm setting examples for them, while also setting a precedent for how I want to live.

Perspective is lifelong work.  It's not one thing which occurs automatically, it's always evolving.  And we're here to evolve with it.

Dear Sister

I started this last year.  I never published it because it felt so raw.  It still does.  Even today, so much of this still applies.  The grief still feels fresh.  I'm still unable to say "My sister died," without crying.  Grief is far from the safe, neat, linear healing journey we crave as humans.  Grief is messy.  Grief steals your happiness.  It settles deep into your soul if you're not careful.

I still can’t say the words “my sister died,” without having to pause, without my voice faltering and tears spilling over.  Grief is a two-faced, low-life, lying bitch who lacks an expiration date.  

Nancy, I don't know if I will ever be able to at peace with losing you forever.  The irony is, when we cut contact off with each other so many years ago, I thought I was already at terms with losing you.  What I really did was abandon you.  And I'm so sorry.  It is a constant struggle to forgive myself.  I'd kicked the toxicity in our family, and I walked away feeling and thinking I was free and clear.  For several days after your death I insisted to Shawn I was fine, I'd already dealt with your loss years ago.  It quickly became apparent I was absolutely not fine.  The physical signs of grief were there long before I was able to admit just how deeply I was feeling your loss—when I wasn’t screaming or crying or apologizing to you in my sleep, I was having stress induced seizures, days-on-end bouts of insomnia, and unrelenting anxiety and constant migraines during the day.  I suffered a complete inability to function, barely able to even go through the motions of daily life.  I endured severe separation anxiety from Shawn while was he at work, developing extreme phobias and even superstitions.  I was terrified to let my children out of my sight, even in the next room or outside without me.  I began to constantly check in on my friends, probably to the point of harassment.  After losing you and Angie so close together, I began waiting for the other shoe to drop, my imagination running wild with who I would lose next.  Shock (and the pandemic) settled in, and while I wish I could say that protected me for a bit, in the end it did more harm than good, causing me to completely check out.  My heart attack followed ten months later, along with other stress and grief induced health issues.  And now, I'm the one who has to live with forever and the pain of not having been the bigger person.  There is a sting which has not subsided.

There are so many things I need to apologize to you for, I just don't know where to start.  Admittedly, I still have days when I'm angry with you for the mess you left behind.  I would have changed so many things if I could've seen the future.  It's true what they say, hindsight really is 20/20, huh?  I know much of what and how I feel now comes from my imagination, what could have been, what should have been between two sisters.

So many should haves...

We should have stood up against her together.  Someone should have stepped in.  Someone should have stopped her.  Her abuse should have strengthened our relationship. 

I'm sorry I never stood up for and with you against her.  It's a pathetic excuse and reason, but I think I was just relieved she wasn't coming after me.  Until you left, I never understood how much of her abuse you shielded me from; whether you did so intentionally or not, I'll never know.  I'm sorry I never apologized to you in person when I still had the chance, while you were still alive.  I'd made my mind up about so many things about you and our differences as moms and adults.  I had a horse called High and boy, did I ride that sucker.  I was a judgmental bitch with a narrow view of life, unable to fully comprehend the damage caused to both of us.  I said so many wrong, awful things I would never say now.  Each one of your abusers had a hand in your death.  I blame them.  Where was He in all of that?  I scream at Him sometimes, from inside my head--"WHERE WERE YOU WHEN SHE NEEDED YOU?"  For that matter, where was He when we needed him?  You turned your back on Him because you couldn't see His hand--honestly, I don't know that I can see it either anymore.  Where were the people who were supposed to protect you--protect us?  We'll never receive justice.  She'll never be punished--at the very least, she'll certainly never see the error of her ways and apologize.  I'm angry.  I'm hurt. I do not believe your soul is at rest.  She'd never allow such a thing (and neither will he, always the victim).  Now I can see, all the times you were angry at me, you were most likely angry at her and I was just the easier, safer target; while I’m sure there were times you truly were angry with me (we were sisters, after all), I now believe when you were angry with me during our childhoods, you were really angry at her—I was just the easy, most logical target.  You couldn’t safely lash out at her, so you turned on me.  I want you to know—I don’t blame you.  I’m sorry she put you in that position.  I'm sorry I was the Golden Child, the favored one.  And you were the Scapegoat.  We both had our roles to play.  I will never know what it was exactly I did to deserve that 'honor,' but I'm sorry I allowed her to pit us against each other in that way, and so many others.  I'm so sorry I let her use me.  I'm so sorry for consistently choosing anger at you over choosing trying to make a relationship with you work.  I'm sorry I could not see you for the hurt, damaged child you were.  I was hurt and damaged too, both of us products of Them, but our 'hurt and damaged' were different, and I failed to understand yours.  Even worse, once I did understand it, I judged you for it, I blamed you.  Our shared childhood, experienced so much the same, should have bound us together, strong against the world; yet, our shared childhood, experienced so very different by both of us, made us enemies instead, weak apart from each other.  Life in that house should have united us.  Instead, it divided us.  

I cling to memories and keep you alive for my kids.  I hope my kids will learn from me and you, and have better, closer sibling relationships.  It's important to me they have each other.  I'm sure you knew, but I used to sit in the hallway outside your closed door, listening to you practice your flute and piccolo.  You were so talented and I loved hearing you play.  I was always a little jealous how naturally the piano came to you while I struggled to just plink out the basics!  Oh, how badly I wanted to be as good as you!  You played with such feeling.  Whenever I hear flute music now, I find my head lilting to the side, a smile spreading on my face, remembering the beauty with which you played.  Remember that time you went toe to toe with our neighbor across the street in Virginia Beach, defending me and my friends?  I can't even remember her name, or her kids' names, but I was so proud and happy to be your sister that day.  Her kids were harassing me and my friends and after we all had words, she came marching across the street, ready to tear someone a new one.  Instead, you stood up for me and Marcy and Shirley in a way I'd never seen before.  I stood in such of awe of you that day.  I have to wonder now if, in your own mind, you were standing up to Janet.  I remember that same year, early Christmas morning, I heard you come out of the bathroom and you took me down to see the tree, just you and me.  It felt like a secret, our secret, a big secret with my big sister.  I probably did something bratty like tell on you later that morning (in fact, I did tell on you... I said I'd caught you using the red light on your Walkman as a flashlight to snoop...), but that is a memory I hold dear now.  Kind of like the time you came to my rescue in college, dropping everything, no questions asked.  You were my big sister then, protecting me, looking out for me.  In that moment, you were the sister I'd always needed you to be.  I guess that is one of a few secrets you took to the grave for me.  I'm certain you took some of your own secrets with you, too.

Every day that passes, I still miss you.  I miss what might've been had we both hung in there.  I keep hoping the pain of your absence will lessen with time.  It hasn't yet, and in six months you'll have been gone four very long years.  

I miss you, and I'm sorry.

I'm Not Your Babysitter

Throughout the spring, summer and fall, our family enjoys attending local music festivals and other forms of outdoor fun.  I seldom get out of the house anymore and the kids refuse don't either, so when we have the chance for fresh air and fun, we jump on it.  Well, Shawn and I do.

Inevitably, our kids find other kids and vice versa to play with at these festivals.  Our hope heading out is they will actually find other kiddos, allowing us to enjoy ourselves in relative peace.  We keep a close eye on ours, have Avery check in periodically if he heads off on his own, and we're quick to pull everyone back if it looks as though they're imposing, apologizing to and thanking the other family for their patience.  I'm not there to watch anyone's children except my own, nor do I expect anyone else to watch mine.  I'm not a babysitter; random children are not part of my circus.  I've got enough on my hands with my own monkeys and circus, thank you very much.

This past weekend, we went to one such music and flower festival.  We were really looking forward to it.  The weather was perfect, one of our favorite bands was playing, and one of our favorite local restaurants was selling their incredibly delicious brick oven pizzas.  We were looking forward to walking among the flowers, buying some flowers to take home, watching the kids play and listening to some great 90's tunes.  I even dressed up a little to make the day feel more special.  It was going to be a great day!  We had plenty of snacks for the kids, Avery packed a book and both boys had action figures with them.  We tend to (over)prepare for any and all contingencies when we take our children out, so I'll be honest, I don't have much patience for people who don't.  You're a parent, get it together.  

We laid out our blanket, unpacked our things and sprawled out all over each other--okay, Ezra didn't, he squatted because the grass had the audacity to be under the blanket.  Sigh.  The day was just warm enough, the sun bright without being too hot, we had a nice breeze blowing, and the sky was a beautiful blue.  It was an amazing relief from the summer heat.  

Before we'd been there even fifteen minutes, we'd attracted the attention of a 4-5 year old boy who was very curious about Ezra.  Yay!  Go play!  Be gone with you!  

No such luck.  Little Boy (LB) was insanely curious about what looked like to him, I'm sure, our many treasures, and Ezra wanted nothing to do with what felt like to him, I'm sure, this invasion.  Uninvited, LB plopped himself right down on our blanket, quickly making himself comfortable.  A little too comfortable.  If the boys were using their little personal fans (aka, "please be quiet and stop complaining" fans), LB was hot.  And not just hot, but soooooo WHINEEEEE hotttttttt.  When we were eating our pizza, he was HUNGREEEEEE.  Juice boxes?  Yep, you guessed it--he was THIRSTEEEEE.  I don't know about you, but I'm not giving food or drink to a child I don't know, knowing nothing of said child's medical history, dietary needs or the personal ethics of the parents.  Not going to happen.  However, I also wasn't going to tell my own hungry and thirsty kids they couldn't have their needs met because of this child.  I don't have much patience when my own children whine at me.  So a complete stranger's kid whining in my face?  Hard NO.  Please go back from whence you came.  Now.

I have to really give Avery a lot of credit here--LB had grabbed one of his action figures before any of us could say anything, and even though LB brought it back when I told him it needs to stay on the blanket (and you need to go find your people...)--he was a 4 or 5 yr old kid (presumably one without boundaries and rules), so he played like one.  I whispered to Avery, "deeeeeep breaths," commending him for how well he was handling it.  I know he was struggling to not climb the nearest wall, have a full on meltdown or even scream point blank at LB (Me too, kid.  Me.  Too).

After politely suggesting he should return to his family ("Do you know who you came here with?  Can you point to them?" "*shoulder shrug* I'M HUNGREEEEE!!"), we surveyed the entire grounds for any individual or group watching him, watching us, motioning to him, calling for him, heading our way--nothing.  Not a single person showed any interest at all in LB (I wonder why--??).  We repeatedly, cheerfully, and politely, suggested he should go find his people.  I'm not exaggerating when I say at least forty-five minutes went by before we finally found the group we thought he belonged with: three young girls, all drinking wine and giggling and taking selfies with each other.

Oh, sorry--did I audibly groan just now?  Or perhaps the earth tilted a little when I rolled my eyes?

Seriously.  I've been (unwillingly) entertaining your child for nearly an hour so you can have your wine and take your selfies in peace?  Nooooooo.  Nope.  Not today.

I realize this makes me sound like a very not nice person, so to be clear, we would have been just fine if LB and Ezra played around the blanket or ran around while staying within sight.  We would have been fine if they'd given us a wave, ANY sign they acknowledged him and were keeping their eyes on him, ready to reign him back in.  I just did not have the patience, nor the desire, to have someone else's child up in my face, nor did Ezra want anything to do with LB.  If my boys wanted to share their action figures and play with LB, I would have encouraged it, but I'm not the parent to command my children participate when they aren't comfortable.  My children have their own voices for a reason.  Please don't ask how well that works for me on a school day.  Sigh.

This group finally realized we were staring daggers in their directions (at this point, we had popsicles and the kid was practically screaming because he didn't).  Young Lady #1 (YL1) skipped (SKIPPED) her way over to us, cheerfully demanded to know my name (excuse me?), then, referencing LB, asked if it was "cool if he could chill here (with us)."  I laughed out loud.  Wrong answer, I know, but my next answer wasn't much better.  I explained (slowwwwwleeeeee) that we are strangers, we were there to enjoy ourselves and family time, I absolutely was not there to babysit her child ("OH! He's not my kid, he's my little brother!" Ummm--don't care!  Not the point!  Still not my problem!), but if he spent anymore time monopolizing mine, I'd be happy to submit an invoice to her for my childcare services.

My late 40s have been brilliantly, wildly liberating, just saying.

I thinnnkkkk by the look on her face, that wasn't exactly the answer she was expecting.  Oh well.

It appeared LB was there with YL1 and two of her friends; he was snack-less, drink-less, toy-less, bored and not well attended at all.  Later, Avery said he saw LB take a coke from another family's blanket and run off with it.  Oh my gosh.

For our remaining two hours there, we were, mercifully, left alone.  LB, YL1 and her friends gave us and my RBF a wide berth after my offer.

Look folks, I'm tired.  My family is tired.  It's the kind of tired sleep doesn't solve.  I had 6 seizures in one 24-hour period earlier in the week.  We never know when I'm going to do my little teapot routine, so we're always exhausted and anxious from being on guard.  The meds have made mush out of my brain.  So, when we do get out, I want to enjoy my time and my own family.  I'm not there to entertain your stragglers or make up for your laziness and inattention.  My family and I deserve a break (--especially when we've paid well for it); there haven't been too many of those around for us the past six months.  We need all the breaks we can grab up, especially with our school year nipping at our heels.

I don't care what you do with your kids, just don't dump them on me.  Don't trust I'm happy to entertain your child so you don't have to.  Don't expect me to watch your precious little one just because I have my own.  And please, for the ever-loving LOVE, do not presume I am content to listen to your child yammer nonstop as s/he crashes our party.

I'm not running a daycare on my picnic blanket.  I'm just there to enjoy myself.  I am not your babysitter.

Conversations with My Brain

After suffering through an unrelenting week-long migraine combined with excruciating neck and shoulder pain, I had a medical massage this morning.  My usual rescue meds and tricks were useless, resulting in my FNP prescribing the 'big guns' in the hopes of at least taking the edge off.  

Physically relaxing my body and clearing my mind is a chore for me.  It is not something that has ever come naturally, and my efforts to relax often mean I try too hard.  This always results in a ridiculously exceptional FAIL.  Sometimes I laugh about these internal monologue fails, sometimes I scream internally, and other times I just do both, because why not?  My brain reacts similarly to attempts at falling asleep--typically dredging up situations from 40 years ago.  On those nights, my brain turns into Elsa... "Let it gooooo!  Let it gooooo!  Just let it freaking gooooo!"  I guess you could say this level of attention my brain gives me when I don't need or want it is the norm.  It's an entirely different story when I actually need my brain to work!  It's always times like this when I need my brain to cooperate that it goes the most rogue.

--------------------------

Me to my body and brain: Okay, look, we took our anxiety meds and a muscle relaxer before we got here, so we're really going to do it this time.  We're really going to clear our mind and relax our body.  Breathe in, 1, 2, 3... breathe out, 1, 2, 3.  Blank slate.  Free your mind...

My brain: Oh! I know this one!  I know it!  "Free your mind, And the rest will follow!  Be color-blind, Don't be so shallow!"  I told you I knew it!!

Me:  Oh my gosh, seriously.  Please stop.  Please just relax....

Brain: "Relax, don't do it..."

Me:  Seriously?  THAT'S the song you came up with?

Brain: *reenacts diner scene from When Harry Met Sally*  OHHHH YES!  RIGHT THERE!  JUST.  RIGHT.  THERE.  DEEPER!  HARDER!  OH YES!  JUST LIKE THAT!!!

Me:  WHY ARE YOU LIKE THIS?????

Brain:  Well, I am you, after all.  How else would I be????

Me:  *as the massage is ending*  Wow, that went fast.  I can't believe it's over already.  There's no way it's over already.  It can't be!  It's not possible! NO!

Brain:  "It must have been love, But it's over now..."

Me:  Great job.  You just wasted an hour rambling on and on, singing random song lyrics and movie lines when you were supposed to be relaxing, lyrics and lines you can't remember on a good day, but manage to pull out of thin air when we're SUPPOSED TO BE RELAXING!

Brain: *attempting to communicate telepathically with therapist*  "If I should stay, I would only be in your way... So I'll go, but I know I'll think of you every step of the way... And I will always love you, I will always love you, You, My darling you..."

-------------------------

So tell me, do you relate to this, or does your brain behave?

Our new NEW Normal (Again)

I have long preached 'self care' to other mamas, while completely neglecting--refusing?--my own advice (as well as my body's deafening screams).  As such, ignoring my body and mind has caught up with me (again).  This post is not meant to elicit pity, sympathy, or OHMYGOSH reactions.  I'm also not here to bring drama (although, I'm quite certain I am the drama), but you need the full story to understand (and honestly, some of it is just funny--and it's just therapeutic for me to get everything out of my head).  Think of this as a cautionary tale, rather than one of woe.  Sometimes shit happens, and, well, shit happened.  I do not want pity, platitudes or sympathy (no advice either, unless we ask, please--we're navigating this with the help of several carefully chosen and trusted professionals)--I'm determined to not allow this to completely sideline me.  I am not feeling sorry for myself and I refuse to be a victim or a hostage to this disability.  Life. Will. Go. On. Perhaps not at the speed I'm accustomed to, but it is absolutely going on.  I am not using this for attention  Instead, promise me you'll finally schedule the medical appointment you've been putting off, you're committing to cease overcommitting, or you're going through safety lessons and emergency responses with your kids.  My intention is only to share a recent lesson my body and brain forced me to learn when I did not respond to their desperate pleas for help:  A lesson in listening to your body, making time to take proper care of yourself, and making time to rest properly, well and purposefully when you need to.  Just take my word for it--Listen.  To.  Your.  Body.  PLEASE.

Grab your tea and get comfy, this is a long one. 

No, really.  I'm not kidding.  It's like, really long.  Tea, yoga pants, strip your bra off, grab your comfiest pillow and your cat. In fact, if you need several breaks while reading this, I wouldn't blame you.

*ahem*

When life went sideways three years ago (for those of you who are new here, my best friend and sister died suddenly within 2 months of each other, I had a heart attack and dangerously low anemia several months after my sister died, so I was hospitalized for a week, and oh yeah--the pandemic shut the world down just a few months after my heart attack; more recently, I received a diagnosis of myocarditis, possibly due to the Covid vax, but am doing better), I began having nocturnal tonic-clonic seizures (aka, grand mal).  They were few and far between, didn't seem to affect daily life, I came out of them within five minutes and they were not inhibiting my ability to function.  After consulting with my neurologist, as well as a few inconclusive tests, we chalked them up to stress and decided to just keep an eye things. They've always woken Shawn up, so he would watch the clock, watch me, ensure I was safe, I'd go from seizure to sleep, not realizing I'd seized until he told me in the morning.

That was all fine and dandy until three months ago.  

Avery and I were running errands around town, having decided to make a date out of our morning after his lab work with my FNP.  We had Elijah with us to lend his wing to Avery for the blood draw, and I've been continuously thanking the duck gods we did have him with us ever since (This duck knows nearly as many commands and works as hard as some working dogs!)!  I'd forgotten my wallet, so had to run back home and back to town on our twisty, turney back roads. We hit Starbucks, had a quick errand to run, then we were heading downtown to the pet boutique with Elijah (when you comfort your boy during his blood draw like a good duck, you get treats); we planned to also shop for Avery's cat, as she'd recently celebrated her birthday.  We'd lost our beloved Wilbur the week before, so we were all dealing with a lot of heartache and heaviness and deeply in need of any kind of smile we could muster.

Remember in my first paragraph I stated sometimes shit happens and it did?  It absolutely did, and in a rather monumentally public fashion.

Pulling out of Starbucks onto the main road through our tiny little town, I began to seize.  Yes, this was while I was driving.  Yes, this was with my child in the car.  Yes, my child was terrified--but let me tell you, he went right into action and was quick on his feet.  This kid is typically paralyzed when presented with fearful situations, but WOW, we are so proud of him.  No, seriously--I want you to take a minute to process and appreciate his actions.  This would be a big deal for any 12 year old, but a kid with autism and extreme anxiety?  Freaking HUGE.  He used my phone to call Shawn (we got lucky--I'd been texting Shawn in the drive thru, dropped my phone in the passenger seat as I pulled out of the stop sign, so it was already unlocked and open to Shawn's profile), who immediately got in his car with Ezra (who was pants-less, of course!), and headed out to find us.  Avery then called 911, put the car in park and turned it off.  We have no doubt he saved lives (Rumor has it, Avery and Elijah will be receiving awards for their heroism from the police department!  And in yet another effort to find the hilarious in this mess, we've learned Elijah needs special permission from the town powers-that-be to attend the banquet... I want to be there when the captain brings that up to his chief, the mayor and board of supervisors!  And yes, they're absolutely using Elijah for a photo op, but if it means even one parent has a safety talk with their child, it's worth it.).  While on the phone with dispatch, the town police captain, who happened to be off duty and behind us, realized something was wrong, used his personal vehicle to block traffic, then took over reporting to dispatch for Avery (apparently, once I came out of the seizure, I kept demanding to know who the "looky-loo in the Mossy Oak" was and telling them to get him out of there... Ohhhhh, he's the police captain?  He's your boss so you can't make him leave? Got it, okey dokey!).  While waiting for rescue and other police officers and also trying to keep Avery calm, the captain had him relay my medical history to him. Avery also gave my keys to the police captain, then relayed my medical history to the EMTs.  

Keep in mind, my husband was driving through downtown--Avery and I were uptown on the other side of town--with windows down, yelling for Avery, listening for sirens and looking for any sort of crowd that might look like a medical emergency.  I've never turned on the location services on my phone (don't worry, they're on now!), and Avery had forgotten to tell Shawn where we were in his panic to call 911, so Shawn really had no idea where we were.  He said it's the quietest Ezra's ever been!

Coming to--but not knowing/understanding I'd been out and was coming to--I found my car surrounded by 5 police cars and 2 rescue squads, but it definitely was not sinking in.  What in the world????  I had two police officers and one EMT at my driver's side window and another EMT on the passenger side reaching through taking my pulse.  I yanked my hand back, trying desperately to make sense of everything, hoping for any clue to alleviate my confusion.  One police officer and the EMTs were trying to talk me out of my vehicle and I wasn't having it (I'm a stubborn pain in the ass, but also did not grasp the situation).  I knew there'd been no reason for me to have been pulled over, I didn't remember being pulled over, then demanded to know why I'd been pulled over.  One EMT stated they thought I'd had a seizure or a stroke.  No one explained to me that Avery had called 911 and why, they didn't explain why they thought I'd had a seizure or a stroke--I was just very shocked by, and unsure of the attention.  I insisted I was fine, I wouldn't put my kid in danger (uuuugggggggggh, sigh, someone should've told me, maybe?), I took my sunglasses off so they could see my pupils, maintaining that I was fine; we were not prepared for a seizure to strike during the day, and I hadn't had one for several months, so it did not occur me to at all that my brain could've randomly treated me to a roller-coaster-ride-during-an-earthquake experience.  I had absolutely no feeling of, not even the smallest inkling of what just happened.  There hadn't been any warnings, no signs Avery and I have been able to discern.  I was definitely a *little* on the argumentative side (I have since called and apologized to the police and rescue crew), as I was frustrated with myself, embarrassed and scared when I couldn't answer their attempts to assess my mental status, repeatedly telling them I couldn't answer because I was nervous and felt put on the spot (if you need a good laugh, I could not think of our president's name, blurting out "OBAMA'S VICE PRESIDENT!" One of the EMTs chuckled and said, "Okay, fair enough." When trying to give them Shawn's phone number, I was mentally repeating "not 123 not 123 not 123," to myself, as a former phone number of ours and his current phone number are one off--so I said "555-not 123-0000.").  Every time I said I was nervous, they would ask why--uhhh, maybe because I have no idea what is going on???  Avery laughed later about them asking me the date, saying he didn't know if he could answer that one!  Ahhh yes, the lackadaisical lifestyle of the homeschooling and not-famous-at-all!  When I was trying to tell them I was fine and trying to put my car in gear to leave (no keys!), when Avery, who was standing behind my seat yelled, "MOM! STOP!"  I saw his face for the first time, heard the command of absolute fear in his voice, and realized he was shaking like a leaf.  Finally agreeing to let the EMTs check me over, I told them I needed to put my car in the adjacent parking lot for my son's safety (I still didn't notice it was in park, off and my keys were missing).  Refusing to allow me to do so, the police officer in charge assured me they had the road blocked, so Avery would be fine... Sure enough, there were numerous police cars behind my car, parked perpendicular, the rescue squad and more police cars parked in front, and numerous traffic cones with police directing traffic (I don't remember much, but I do remember uttering, "You've got to be f***ing kidding me.").  I'm 100% positive I ended up on at least one person's social media page, but I guess that's a risk you take when you, your long-haired kid, and a duck in a carseat shut down the main road for over an hour, surrounded by police and rescue personnel.  My car isn't exactly inconspicuous, either.  In fact, when I saw my stylist the other day, she mentioned having seen the commotion and asked what happened.  Small town life, y'all.

I’m honestly relieved they didn’t do a field sobriety test because I know I wouldn’t have passed it.  I wouldn't be able to pass on a good, migraine/seizure-free day, for that matter (my neuro exams are fun for this very reason).  The police captain admitted he first thought drugs, then “I saw the designer purse, Starbucks and kid with a duck and realized it was not drugs or alcohol.” I can’t stop laughing over that one! I’m impressed a small town police captain dressed in Mossy Oak knew it was a designer purse!  Also, Avery and I are still low-key upset we didn’t get to drink our coffee! 

Having dragged the gurney out of their rig next to my car (unable to move me during the seizure), the EMTs indicated I should get on it.  I declared I did not need their gurney and I would walk to the rescue squad (I may or may not have actually said, "NO, I'M NOT GETTING ON YOUR DAMN GURNEY!")--then promptly fell getting out of my car while they loaded an empty gurney back on the rig (see above: stubborn PITA).  Relaying the story to Noah, he sighed with relief knowing none of the responders were any of his former colleagues.  As they did their once-over, the police officer in charge got Avery and Elijah out of the car; Elijah was helpful in comforting and distracting Avery, and provided conversation for his boy and the police officers (Elijah has been rewarded with all the minnows, peas and tomatoes a good duck like him could ever want).  My mismatched pajama-pant-and-flannel-shirt-clad husband (the luxury of working from home combined with an emergency that didn't allow time to change!) was also contacted with our location and arrived not soon after.  I refused transfer to the hospital (remember, I still felt fine, despite the frustration and severe confusion, and still did not comprehend the gravity of the situation, also, stubborn PITA); the police captain and medics strongly disagreed with my personal assessment and encouraged Shawn to take me to the ER; Shawn asked if I wanted to go to Hospital A or B, I said B, figuring I'd be able to talk him out of it on our way home (again, see above: stubborn PITA, zero concept of what happened).  No such luck.  Turns out, my husband can be a real stubborn pain in the ass, too.  He was also scared out of his mind.

At the ER, the staff ran allll the tests and coordinated with my neurologist, who immediately began a seizure drug regimen (I just want to go on record about the ER nurses--they were incredible.  We had two scared, hungry kids with us (and a terrified husband); they not only took excellent care of me, but also cared for my family, ordering lunch trays (chocolate milk and pudding!) for the boys after overhearing Shawn trying to feed them lunch from the vending machines, and doing everything they could to make what was happening less scary for my kids).  

We followed up with my neurologist a week later, leaving his office with a diagnosis of epilepsy (primary type of seizure being tonic-clonic, but we believe I've had at least 5 more since, which have differed in presentation; Want to know how high maintenance I am? I have two neurologists now: One for migraines and another for seizures.).  Yup, I managed to develop epilepsy in my late 40s (I mean, who does that?  Oh yeah, that's right--I do)--and not only that, I had the defining seizure on World Seizure Day.  Good grief.  Don't ever let it be said I'm boring, okay?  I'm just going to tell you--I hate how these meds make me feel!  I feel as though I'm slogging my way through a waist-deep bog.  I'm frustrated, as my memory is all but non-existent, I'm having difficulty following conversations and written directions, and we're playing Words With Amy again (this game is rapidly evolving into Finish the Sentence for Amy).  I'm constantly dizzy, I need help showering, as well as navigating the stairs, and I'm absolutely drained of any energy.  However, I will continue this regimen to protect myself as well as my family.  I may not like the meds, but they really aren't optional.  What I'm angriest about the most right now is I felt as though I was finally beginning to come out of the dense fog from the past three years, ready to finally help myself--and now I've been sidelined.  Again.  This time, not by my own choice. 

We have no idea why my brain is glitching in this manner (personal and family history of migraines and autism, which are strongly correlated to seizure disorders?  Stress?  Just for the fun of it?  Because it could?  Those are our best guesses.  My FNP ran several labs in the hopes of finding answers, but they did not provide any.  One was a blood serum test for Serotonin Syndrome, because of the many meds I take.  Annnnddd that result?  Absolutely no serotonin registering in my system at all.  ZERO.  The lab claimed they've never seen such a non-existent level before, so they recalibrated their machine and ran it twice more.  Laugh with me, folks!), but we are educating ourselves to be prepared for the next one.  

Weirdly, I think I am taking it better than Shawn and Avery (Ezra did not see the actual seizure so he doesn't have a concept of this); I have never been a fan of the it-is-what-it-is mentality, but honestly, it really is just what it is.  I've accepted there isn't anything I can do about it (aside from meds) and this is a lifelong, life-altering diagnosis.  It is just another paving stone as we navigate life through Left Field.  This the new normal for all of us, not just me.  I will admit to some anger and frustration, but I realize there's really no point to it, even though I am allowed to feel my feelings.  It is especially difficult for me being unable to recall any of the events.  Avery has done well attempting to fill in the gaps, as did the police captain, but I'm honestly struggling with having lost time, and having done so in such under such public circumstances.  This was humiliating for me and I'm having a difficult time making myself not obsess over it.  I am a Type A personality with a near-compulsive, anxiety-driven need for control over my life and most situations.  This has left me feeling incredibly vulnerable, exposed and uncomfortable.  Looking on the bright side however, Shawn pointed out I'm no longer questioned or harassed over my handicap parking placard!  Does this mean I actually look old and feeble now???

The most important thing right now is to help Avery through this, prepare him well for next time, and give him back some of the power and control he lost that day.  He has aged several decades in the past three months; it is hard and sad to see my child this way.  He sits and watches me, waiting for the slightest twitch, reporting back to Shawn, yelling to/at me to check on me if we're not on the same floor, and even if we're not in the same room.  I have to be very aware of my behavior and mannerisms around him.  We sent him to "Camp Aunt M" a few weeks ago at his cousin's house, hoping he could just be a regular kid and let go of some of the weight he's carrying around.  Avery has admitted being angry with us for downplaying my nocturnal seizures, leaving him wholly unprepared and shocked, for which we have profusely apologized, while understanding mere apologies will not erase this.  He's also been angry with how the police and EMTs did not react--he was upset by how little they did during the seizure and how calm they were ("Mom, they weren't doing anything.  They stood there just watching you, not doing anything."  We explained to him their reasons for remaining calm and also explained there is seldom anything to be done for seizures, depending on the circumstances.  At that point, it was all watching and waiting, timing the seizure and making sure I was safe.  We explained they couldn't move me without risking injury to me or someone else, CPR wasn't necessary, and I was coming out of it right at the ten minute mark when they would've begun administering meds.).  As parents, we've always taught our kids knowledge is power, so we are arming Avery the best we can.  We've been over seizure first aid with him, practicing it, asking him questions about each of the steps so he understands why or why not to do certain things.  Shawn put him different scenarios in my car in our driveway to react to while it's running and we've shown him how to 'crack' my phone for emergency purposes, among other necessary, safety-first lessons.  In addition, he and Shawn will take a Red Cross first aid/CPR class.  I now have a rescue med, more for the purpose of putting Avery at ease, I suppose, as we are hoping I won't have another bad one.  We showed him how to use it, let him practice administering it (the company sent an empty 'trainer', among other things), then stashed them in the car, in my purse, and throughout the house. We are also giving Avery space to process the trauma he endured, while simultaneously teaching him it's okay to laugh about some of it.  A few days ago, he mused if I'd be a more effective paint mixer than the machine at the hardware store... he's lucky he's cute!  He learned anatomy this year, so we've joked I was just that dedicated to teaching him about the brain.  We have taught our kids courage doesn’t mean you’re not afraid—it means you face that fear head on and do the difficult, frightening thing anyway; we have been gently reminding him of this, as well as just how brave he really was.  He's refusing to address his experience (and subsequent feelings) with his therapist and his psychiatrist (or us), but we've given him permission to talk with his friends and trusted adults about in the hopes he will talk to someone (it's not something we're going to hide, nor anything to be ashamed of).  I can't imagine what my child went through and Shawn said he hopes he never has to hear that kind of terror in any of our children's voices ever again.  Avery had to watch, helpless and frantic, as his mom convulsed, struggled to breathe, then stopped breathing before gasping for air again.  For nearly ten minutes.  He checks in with me every morning to make sure I got enough sleep, looks for products that might help me sleep better, suggesting this and that. He’s admitted to waking up in the night to check on me. Because I had a massive migraine which rescue meds didn’t come close to touching the night before my seizure and barely slept due to the pain, I see the fear written all over him each time I’ve had a migraine since (we're not sure those were factors in the seizure, but right up to it, I felt fine and did not have any typical warnings a seizure was impending).  We’ve always had fun movie nights with take out and I allowed the Littles to stay up a little later when Shawn is on-call for work, but now Avery insists we all go to bed instead, “You need to sleep, Mom.”  If he's on another floor and hasn't heard me in a bit, or I drop something or he hears some other out-of-the-norm noise, he races to the main floor screaming my name.  A few weeks ago, we were separated from Shawn in Target and Avery nearly hyperventilated with panic.  I had him help me research what essential oils are not seizure safe and which ones can be beneficial; the next day I was going through a few and he nearly leapt across the room to smack a particular one out of my hands, yelling, afraid it was one of the unsafe ones.  He's going to need so much time, grace, reassurance and patience.  I noted to his psychiatrist how I don't want to make a victim out of my kid or be a drama queen by referring to his experience as traumatic; she cut me off, saying this is right up there as far as trauma goes, and it's an accurate depiction; both his therapist and psychiatrist have diagnosed a heightened trauma response, as well as possible PTSD.  His anxiety has reached the point we've added an SSRI--it's not fair to him to live with such fear and anxiety.  I'm a little relieved to hear them call it trauma and see them care so much for Avery's well being because I thought for a minute or two I might be exaggerating.  My own personal experience with Avery's nocturnal absent seizures has given me a lot of insight I wouldn't otherwise have into how Avery might be feeling.  His seizures were an enemy I could not see, nor fight.  There weren't any alarm bells or warning signs.  I was absolutely powerless against this enemy that had invaded my child's brain.  When he confessed to checking on me at night, I believed him because I did the same exact thing for him.  I know this isn't easy for him, and it might only get worse.  He is now faced with having to be my medical advocate and even a bodyguard of sorts for myself and Ezra should I have another seizure in public--that's a lot to expect out of a nearly 13 year old boy, especially one with autism, ADHD and anxiety.  We are doing our best to instill confidence in him--and help him be confident in himself--so he's able to speak with an authority to strangers who might think they're helping.

I need to be seizure free for six months before I can drive (honestly though, I'm really not sure I'm eager to get behind the wheel again, and I know Avery certainly isn't ready for it), and I have a shiny new warning label bracelet, which declares my newly acquired disability.  We are massively fortunate to have Shawn working from home for the time being; this man--I can't even tell you.  I know he's carrying the weight of the world on his shoulders, I know he's pretty much a single parent right now, I know he was just beginning to feel like he could finally take a deep breath again as I began to stumble out of my grief and pain--but he has not complained once.  He dotes, he makes sure I'm eating and taking my meds and vitamins, he researches, he takes care of the Littles and he's just really doing it all.  And chauffeuring me is so. Much. Fun. “Please wash the windshield.” “Don’t you think you’re going a little fast?”  "I go this way instead." " Oh, park over there, not here!" “I know I said I only need to go here, but I also need to go there, there and there, is that ok?”  "Now you're going too slow!"  "Watch out for that car!"  His typical response is, "Yes Miss Amy," or whatever other hilarious names he comes up with.  And this sweet man seldom, if ever, tells me no (okay okay, he did draw the line at my request for a seizure llama).  We are overwhelmed by the support coming from our many friends who are stepping in, helping with logistics, understanding we are currently not the family to ask anything of, and just generally loving on us.  Because of our homeschool community, we've not had to consider sending our children back to public school even once in the past three and a half years.

This has truly been a humbling experience (Hey God, maybe there's a different way to teach me humility, though?).  I had big plans for myself and the kids this summer, hoping to recover what we've lost these past three years.  Now there won't be any day trips, weekend trips, not even trips to the library unless Shawn's schedule allows them.  It's going to be a long, boring summer (thank God for the Johnny Depp/Amber Heard trial (Team Johnny!)!).  We will have to do what we can to live it up from here.  I am upset to miss out on our co-op's many summer get-togethers--I need them just as much as the kids do.  I had intended to do the substitute tutor training this summer for our homeschool co-op, and I typically spend many of our community days in the nursery, but I am no longer comfortable being the 'reliable/responsible' adult in either situation.  We've had to cancel Ezra's SLT for the time being, which has caused somewhat of a regression.  He is also experiencing regression in terms of OT and ABA, but again, it's just not possible to make it happen at this time.  I am upset about what our kids are missing out on--our kids didn't ask for any of this and I want them to have fun, I want to them receive the help they need and not miss out.  They are both struggling without our typically scheduled routines.  However, they are watching me and my reactions to gauge their own.  We've decided to approach most of this with humor--sitting around and feeling sorry for ourselves just isn't an attractive option.  Yes, this certainly complicates our lives, but wallowing in self pity or being angry about it won't solve anything.

This has also served as a great awakening for me.  From my early teens through my late 20s, I engaged in self-harm and just did not want to live, to the points I not only prayed for death, but planned and attempted suicide more than once.  In addition, Shawn and I realized we've confronted my own mortality at least four times over the past seven years, beginning with Ezra's birth.  And now--I've got too much to do.  I'm not finished living yet.  I will not go quietly, nor willingly.  I have too many people to love, and too much to live for.  To say we're experiencing immense gratitude would be an understatement.

I'm thankful for the epilepsy community, who not only welcomed me with open arms, but they've also been helpful recommending resources to me, and have just been generally crazy-patient with my constant questions.  Many friends have expressed disbelief and exasperation at my driving restrictions, calling them unrealistic and asking how in the world we'll manage.  My answer to that is, we'll manage just fine.  Will it be easy?  Ohhhh, heck no, it's absolutely a huge inconvenience!  But is it the safest and best (only) option right now?  Absolutely.  I am currently a hazard to my own family and others on the road.  I'm not willing to risk that, you know?  I would not be able to live with myself if I'm the reason for another family's tragedy, or our own.  We got lucky this time.  When I pulled out from the stop sign, the cars behind us were stopped at a red light several hundred feet away, the police captain was behind us, not much traffic as it was mid-morning on a weekday, Shawn was working from home, I did not have Ezra with me, the seizure did not cause me to put force on the gas or brake pedals, I was going maybe 10mph exiting the stop sign and I was headed up a slight incline, so my RWD car simply cruised to a stop, and most importantly--no one was hurt.  We are reaching deep into our dark sardonic humor in order to cope, but we're coping.  When I asked Avery how he feels after 'responding' to his first emergency, knowing he has first responder genes, if he feels as though this could be something he'd like to explore, he responded, "Well, maybe, except for those people who refuse transport."  This kid is fancying himself a regular comedian!    

We got lucky this time.

I do not ever want there to be a next time.  We may not be so lucky again.

There Aren't Any Answers

Along with the majority of our country--as well as our world--I'm closely following the stories stemming from the Uvalde shooting.  Like many others, I watched the tragedy unfold, eager for any sort of news, hoping for any bit of good.  Needing a bit of good.  Shawn and I have been trying to have age-appropriate discussions with the kids concerning safety and what to do, if God forbid, we're ever caught in such a situation.  We've talked with our kids about the victims, making sure we use their names.  We've had conversations about right and wrong, and explored appropriate and acceptable ways to express our emotions.  We've done our best to answer Avery's questions, but truthfully, there just really aren't any answers for this sort of brutality.  We've tried to assuage his fears, but how exactly should parents do that when we're trying to hide our own fears from our children?

As a mama, I am heartbroken.  I am shattered.  I am just plain physically sickened and disgusted.  I am angry.  I am in pain for the families and parents experiencing the absolute most tragic moments of their lives, who are having to do so publicly.  I have wept, I have broken down into sobs, I've hugged my own children that much tighter.  I have screamed that primal scream, that anguished howl only a mama can unleash for other mamas who are grieving the unimaginable losses of their babies.  

I don't understand any of this, nor do I think I want to, really.  I'm afraid of what it would mean for my own humanity if I were to have the ability to comprehend this pure madness. 

And, if I'm being honest, like so many others, I'm tired--that kind of weariness that settles in your bones and casts shadows across your brain.  I'm emotionally exhausted from the "thoughts and prayers" after each casualty, given out like free candy.  How useless and pointless.  I'm sick of hearing other Christians proclaim, "someday there will be answers!"  I'm fed up with hearing of God's goodness as they announce, "this is all part of God's plan!"  Can you imagine saying that to a grieving parent or having to read it again and again on social media and in the news?  How positively ludicrous.  Then there's, "They're all little angels now, God has taken them home!"  Read the bible.  That's not how being an angel works.  And let's not forget, "One day there will be a glorious reunion and their parents will see them again!"  Fairly certain their families would rather be able to see them now, here on earth where they belong.  What purpose do any of these platitudes and cliches serve, exactly?  I am spiritually nauseous and fatigued from the ways so many other Christians react to each new act of inhumanity.  That shouldn't even be a sentence I have to write... "each new act..."  I am thoroughly disgusted with how victims--children, babies--and other loved ones are used as political fodder, talking points, false anger, photo ops and empty promises.  There is absolutely no shame.  I am downright emotionally worn out, having to scan the nearest exits when I'm out with my kids.  I can no longer take having to always be on my guard, playing different scenarios in my head, terrified of not being able to protect all three of my children.  I hate--HATE--the conversations we need to have with our children because of the state of our world.  This is a reality we should not have to face.  It sickens me to my core.  This is pure, unadulterated, evil and insanity.

NO.  Full freaking stop.  NO.

Thoughts and prayers are getting us nowhere.  NOWHERE.  They weren't shields between the children and the bullets.  They didn't serve as the comfort only a parent could offer as those babies lay there dying, confused, terrified and hoping for help to arrive.  Those thoughts and prayers didn't bolster the police to do their jobs (at all), and do them efficiently and quickly.  Neither did they serve as divine intervention to the shooter's mentality and actions.  And they certainly won't prevent the next shooting.

I refuse to believe God's plan includes children dying from mass shootings.  I will not believe such a plan means parents will never hear their child's laugh again, they'll never get to kiss them goodnight or tuck them safely into bed again.  There won't be anymore hugs, and the milestones have come to a jarringly unexpected and tragic halt.  I will not accept the ever-so-popular Christian trope that God will make something good out of the pain these families are feeling and the terror their children felt in their last moments.  These families shouldn't have this pain, nor should those children have had to experience such terror in the first place.  Children should not have to cover themselves in their friends' blood to be already dead.

I am absolutely DONE hearing "there is no fear in the Lord!"  What do you think those children felt in the last few minutes of their lives?  They felt fear.  They were terrified, you twits.  What do you think every single parent felt, standing outside the school or waiting at home for any word about their children's safety, urging the police to do their jobs?  They felt the absolute worst fear they've ever felt.  And the children who survived and their parents?  The mere idea of returning to school, the thought of going out in public petrifies them.  I feel fear every time I go out with my children and sadly, I know I'm not the only one.  I scan crowds, looking at faces, watching behaviors and actions, deciding if that person poses a threat to my children.  I look for hidey-holes I can safely stash my children in.  I felt extreme fear and panic the day Noah's school was locked down due to an active shooter.  I'm one of the tremendously few parents who saw her child come home at the end of the day.  All the students from him school went home that afternoon.  We got lucky.  And that is not something I take for granted.

In truth, there are no answers for this sort of nightmare.  There are only excuses, victim blaming, a complete and total lack of accountability, and a system which utterly fails our children and loved ones over and over and OVER.  And, as we've also learned this past week, there are lies and attempts to cover up fatal inactions and catastrophic failures, and general incompetence.  So many lies, inactions and failures.  So much incompetence.  This was pure evil.  There is no answer for that.

I desperately want to have hope, I want to have faith.  But I'm sick to pieces of platitudes and cliches.  I'm sick to death of the same arguments, the same politics and the same inaction every single time one of these tragedies strikes.

This has to stop.  Parents should not have to bury their children.

We owe our children--we owe mankind--so much better.  Our children deserve better.