Ketameeeeeeen Makes Me Feel Fiiiiiine...

A little over a year ago, I sat in tears, describing the depths of my anxiety and depression to my FNP. 

I felt desolate. I wasn't handling life well. My meds felt hugely ineffective. I felt wildly out of control of my life, powerless. I had no power over myself or my life. Life was just happening to me. Around me. My brain, my body, my soul--every part of my being was in shut down mode.

I wanted a magic wand. Instead, my FNP suggested trying ketamine treatments.

If you've never experienced depression, it is this huge gaping hole. It just swallows you completely. Depression is this rogue wave and it knocks you off your feet, not allowing you to catch your breath or get back up before it knocks you over again. It steals, robs and violates--and not just you, but everyone you love, and everyone who loves you. 

This past winter, I admitted to my FNP, Shawn and my best friends that I should probably be hospitalized. I simultaneously acknowledged hospitalization most likely would not solve anything, could possibly even make things worse, as well as cause it's own problems. If anything, it might possibly have given me a chance to slow my world down for a minute or two, get my bearings and take a bit of a break. Possibly. It could also have intensified my sensory overwhelm, as well as my feelings of not being in control of my own life.

I've battled depression and anxiety for a little over 30 years. In addition, I've battled PPD, PTSD, and the oh-so-fun, roller coaster-y yearly SAD. I've cut and burned myself, and I've lost count of my suicide attempts. I was hospitalized once in college. None of this has been fair to my children and husband. They deserve a better version of me.

The majority of these three and a half decades, my mental illness has been considered intractable, untreatable, unresponsive to medication and various treatments. I've been on every single antidepressant on the market. I wish I were exaggerating. I'm currently on two antidepressants and one anti-anxiety medication; one of my anti-seizure meds is supposed to have a helpful side effect concerning mood imbalances. They have little effect, but they do keep me alive. Still, depression and anxiety often rule my life. Still, they often rule our family life. Still, nothing about it becomes more familiar, nothing about it becomes easier, nothing about it becomes normal.  Day to day, month to month, season to season, it can--and often does--change on a whim. I am a slave to these chemical imbalances in my brain. 

I have, unfortunately, passed these chemical imbalances on to my children. I hate it for them.

Shawn has watched me suffer and struggling, suffering and struggling right along with me, trying to keep me going. I hate it for him.

Two and a half weeks ago, I had my first ketamine treatment. 

Over the past year, my FNP has acquired every single piece of specialty equipment, she's attended multiple trainings, and provided several in-services for her staff. We've hit roadblocks, we've prayed, we've wondered if we were doing the right thing.

And then, it all just came together, all at once.

This first treatment--this first step towards a better me we all deserve--was the fruition of all of that effort and preparation. 

Not knowing what to expect, I took two books along with me; my FNP laughed as she put them aside, telling me I would not need those. I also had my pillow. Babysat by one of my FNP's nurses and hooked up to various monitors, I experienced the most peaceful forty minutes I've had in four and half years, the most pain free forty minutes I've had in countless years. It was absolutely incredible. It was a day worth celebrating. Even though we are only using the depression protocol, we are hopeful to see positive changes in my pain and seizures, as well. 

A week later, I had my second treatment. We increased the dose a little, and I did feel a little loopier. I slurred my words a little trying to speak to my FNP halfway through the session. They had a good laugh when they realized I switched up and was responding with ASL--can't slur my hands! Once the treatment ends, I'm up and ready to go within about ten minutes. I'm somewhat cognizant throughout the infusion, but also somewhat unable to really engage; I can hear the traffic outside, I hear the pump beeping as it administers the medication, I hear people outside the room, I hear them asking me questions, but I'm unable to open my eyes or verbally respond. I do nap for a bit once home. Ten days after that--this past weekend--I had three treatments in a row. In two more weeks, I'll have another round of three. After that last treatment, we'll break for two months. 

Thursday's session--my body's response to it--caught me off guard. After talking with others who have experienced similar treatments, I've learned that is the most typical, expected reaction. It is also the most beneficial; it means your brain, your subconscious, is trying to work through all the stuff you've crammed in there and attempted to bury.  As one person put it, "This stuff will humble your ass real quick." I'd spent the previous night, and several days beforehand, yelling at God. My guard was down. Which begs the question, am I too guarded for this to work? I don't like being vulnerable. I don't like feeling exposed. Will this work if I can't be vulnerable? Those forty minutes on Thursday were not the pain free bliss I'd encountered my first two sessions. I cried through the entire treatment and a bit afterwards. Curled in the fetal position, I heard myself angrily yell at God, "YOU CAN'T HAVE HER TOO!" One of my dearest friends is battling cancer. She's trying to be realistic and prepare all of us, but I'm in complete denial. No. I am not ready to face any outcome besides complete healing. I cannot lose her too. Her family cannot lose her. The world as a whole--it still needs her. God cannot have her, not now, not for a very long time. I not only put my wall back up Friday and Saturday, I reinforced it.

Weirdly, I'm the pioneer here. We've only sort-of joked that maybe it would've been wiser for her to choose a different patient... If (when) this goes well for me, my FNP will be able to offer the same opportunity to others like me. Others like me with families and friends who need more tomorrows with them. I want it to work for other people, I want it to be an option for them. I have a fear of letting my FNP down, of this not working; then what's the point of all the money she's sunk into this project? I don't have to be the one leading the charge, yelling, "WE'RE STILL HERE," but I do want to be the one in the back cheering that charge on. 

I'm still here.

Let's Make it Weird Together

Promise me something--today, I want you to tell your friends and loved ones how much you love them.  Please, make it weird.  Social media friends you've never met in real life but can't live without, the guy next to you at the gas pump, lifelong friends, spouses, your pharmacist, children, siblings, niblings, friends you haven't talked to eons, remote family members you need to catch up with, the cashier at the grocery store--reach out today.  Make today the day.  Gush over them.  Tell them how much you love them, how much you need them in your life, swap memories and laughter, even tears.  Text, or email them paragraphs.  Make that phone call you've been putting off.  Put that coffee, breakfast, lunch, together-time you keep talking back on the calendar for good.  Tell them exactly how you feel, why you need them, everything you wish for them in life, what makes them special to you, and why the world still needs them.  Tell them how they deserve the heavens and the earth moved for them, simply because they *are*.  Let your gratitude for them be known.

Please, put aside your fears of embarrassment.  Please bravely reach out today, and make it weird.  Do not let another day go by without all of this being said.

Tell them today how much you love them.

We never know when--or if--we'll get this chance again.

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.