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.

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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..."

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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.  

Progress, Not Perfection

 This is our son, Ezra.  He's our second rainbow baby as well as our second, long awaited, much anticipated triumph over infertility.  Ezra is very much the third child, the baby in every sense of the word.  We still refer to him as The Toddler.  Or The Turdler, depending on the moment.  He's a month away from being 7.  Seven.  My BABY!  He's funny, sweet, imaginative and inquisitive.  He is positively brimming with personality.  Ezra hates--HATES--pants with a passion.  If it requires wearing pants, he's going to decline, thank you very much.  Gentle Baby is the balm (essential oil) which soothes his inner savage beast.  He has the most musical giggle you'll ever hear and he loves school (and loooovvvessss showing off what he's learning...) and speaks in a very matter-of-fact, pedantic manner.  His voice is the vocal equivalent of shrugging one's shoulders.  And he's constantly shrugging his proverbial shoulders at the world.  He loves fact-checking his Amazon Echo, always hoping to trip her up.  He loves his cat Dashiell, his mama, his dad and his brothers.  He's a sucker for back scratches, arm squeezes and the vestibular-regulating upside downs.  And cake.  This child liiiiiiives for cake.  And tacos!  My car magically transports us directly to Taco Bell at the mere mention of yummy tacos; Ezra knows this and does not hesitate to use it to his advantage.  Tuesday nights are for tacos, every Tuesday, and only tacos.  The dog annoys him, and Elijah has a real hate-on for him, though.  Ezra will tell you he's my love muffin and I'm his love llama.  Oh yeah, and I get to be his mama.

Ezra also has autism.  Even though he wasn't officially diagnosed until early 2021, I knew by the time he was a week old.  It sounds strange to a parent without experience with autism, but it was just so painfully obvious to me.  In many ways, he presented very similarly to Noah.  I looked at Shawn and said, "Well, here we go again!"  While I was pregnant with him, we often joked he was our Obi-Wan: Our only hope for a non-autistic child!  It was not meant to be and I would not change him.  Would I change things for him?  Absolutely.  But I would not change him.  When I recognized his many symptoms, I kind of figured at least we knew what to expect.  We made the choice to roll with it because really, the alternatives to not doing so flat out sucked and would've been counter-productive.  Ezra has been by far, our 'most' autistic child.  He had developed only a few words as a younger toddler, which he lost by 24 months.  There were also many missed milestones, in addition to a markable regression/loss of previously acquired skills.  Fortunately, we were able to obtain in-home early intervention services without an official diagnosis, with only a recommendation from our pediatrician.  Prior to those services at two and a half years old, he tested very high on the M-Chat-R (autism checklist for toddlers--if you have any questions, please ask.  If you have any concerns for your own child, I highly recommend this checklist and going immediately to your pediatrician.  Get on a waitlist for a diagnostic specialist NOW, they are often 18-24 months long); in other words, highly at risk for autism (it is important to note, the checklist is not a diagnostic tool, it can only speak to risk and possibilities).  After six months, he scored much lower on the checklist and we were discharged.  While it was exciting for us, and Ezra had made leaps and bounds throughout those six months, being discharged was also utterly terrifying.  I cried through the entire appointment, through the new checklist, the debrief and the goodbyes, completely unable to hold it all in, and I cried off and on throughout the week.  I'm a champion ugly crier.

As parents, we tend to doubt and second guess ourselves.  When you have a child with special/extra needs, those doubts increase tenfold.  Was discharging him really the right thing to do?  Could he make more progress if we were kept on longer?  You recognize the strides your child has made, but was it enough?  You're also able to appreciate how, with your own child moving on, room is made for the next child and family.  Your heart celebrates for that next family.  It's an incredibly emotional time, quite honestly.  It's a terrifying and exhilarating all at once.  There is the fear your child will regress (and at the time, your rational brain isn't working, so you fail to understand you can always go back if necessary), while your brain is also firing on all cylinders, celebrating the win.  You've also developed an often intense relationship with your therapists and specialists--they know the very deepest fears you hold for your child, they know your family inside and out, they've come to love your child and celebrate every achievement with you--in some ways, you're saying goodbye to a very dear, understanding friend and confidante.  You're saying goodbye to the person who joined you in advocation, the person who was in the trenches with you and your child.  There is a solidarity among therapists and specialists, and the children and families they treat.  So yes, it's emotional.  

We were fortunate enough to be able to return to OT when Ezra was four, again with only the referral from our pediatrician, pre-diagnosis.  I love this woman quite possibly more than life itself.  We've been with her for over 21 years.  She's incredible, and she fully acknowledges I know what I'm dealing with, so she just signs the referrals.  New parents--find yourselves a pediatrician who trusts you.  It makes an entire world's difference.  She also 'gets' our weird sense of humor, which is also very important!  Ezra had fallen behind in milestones again and we just needed to iron out some executive functioning difficulties he was also having.  We found an absolutely amazing therapy center and began our newest journey (local people, if you need a recommendation, please just ask, I'm happy to tell you who we used!).  

That was almost three years ago.  We lost a few months at the beginning of the pandemic when the center closed down, and we witnessed even more regression.  That was frightening.  We lost our two favorite OTs, but gained two more.  Ezra even learned to love the "new" Miss Mary, even though he continually reminded her each week, "You're NOT my Miss Mary."  (his Miss Mary is our beloved sitter)  That was also a little frightening... It could have gone either way!  The office moved to a new building (which made me laugh, given the majority of their clients have autism... if you know, you know) and Ezra handled the change beautifully with their help.  Week after week, I watched these women pour into my child as if he was their own.  Even the front desk staff is fully invested in their clients.  They helped him build daily life skills, social skills and coping mechanisms.  They helped Ezra learn to self-regulate, care for himself and advocate for his needs.  Together, we celebrated goals met and kept, had impromptu dance parties in the therapy room, made new goals and new friends, worked through meltdowns and shared hugs.  Our OTs worked in collaboration with Ezra's ABA therapist for the time we had her, and worked harder with him when we lost her.  Ezra continued to meet his goals, exceeding several of them, even without the added support of ABA.  

This week, Ezra was officially discharged from OT.  We discussed possibly making new goals, but it was determined he really does not need this support any longer!  We did a little happy dance around the therapy center, shared some hugs and slapped a few high-fives.  I was elated!  Ezra, his autism shining through, was completely unfazed and unimpressed.  He is unable to grasp the magnitude of the decision, only understanding he does not have to go back.  I know in my heart he's ready--Ezra is ready to take on the world without the continued support of OT.  This was the right thing and the right time to do it.  I have no misgivings.

To be clear, there are some things he will always have difficulty with, but that is just life with autism.  As it happens in even a neurotypical's life, there are ebbs and flows, stops and starts.  And that's okay.  We will deal with those as they happen and always work to help Ezra adjust.  There are some things no amount of any type of therapies will really help or reduce, and that is okay.  There are parts of him that will always be 'more' autistic than other parts of him.  And that is okay.  It's just how God made him, and he couldn't be more perfectly imperfect than he is. 

We called Shawn from the car with the news and planned celebratory ice cream for that evening.  No, not cake.  Yes, I probably owe him cake.

And then it hit me like a ton of bricks.  It was a like a freight train had slammed into my chest.

The gravity of this moment.  The full meaning of Ezra being ready to try life on his own.

The ugly tears.  

I tried so hard to hold them back because I did not want Ezra to think his success was a bad thing or I was sad.  Sometimes mamas cry happy tears.  It's just what we do.  My chest did that weird heave when the tears are trying to come out but you're holding them back with monumental effort.  I fought the battle and lost mightily.  So I tried to keep it them as quiet as possible, hoping he wouldn't hear over his chatter in the back seat, or notice the catch in my voice as I cheerily responded.  

There are times as we raise our children when our own feelings and thoughts are just monumentally overwhelming.  Recognizing how much progress Ezra has made since his very first combined OT/SLP appointment when he was two has been having that affect on me.  He has come SO FAR.  He has put in the work, and found his voice.  With the help of our support systems, we've slogged through some pure shit to be where he is today.  It has been amazing and beautiful and wonderful to have a front row seat to.  I am just so proud of my love muffin.

So if you need me over the next few days, I'll just be over here in the corner, ugly crying my heart out with absolute joy.

Radio Silence

I have some startling news for you...  Well, it may not be news to some of you, but here goes:

A person not returning your text, phone call, social media message, email or even your letter sent by carrier pigeon...  Isn't about you.  It's about that person.

Wait.  Hold up.  What?  

Yep.  It has nothing to do with you!  You are now free to relax and go about your business!

I can't believe I even have to write about this.

I feel the need to explain this concept because it recently became an issue.  I'm seldom this harsh with my posts, but the point needs to be made.  This may be a bit of a rant, but also apparently a lesson which should be taught.

Most of my friends understand I am busy.  They understand I have two children whom I homeschool.  These two children also have autism and a variety of other needs, all requiring multiple therapies, several of which are an hour's drive away.  I make that drive several times a week.  Most of my friends also understand this time of year is difficult for me due to grief and now, missing my oldest.  What I haven't shared publicly (until now) is my health has taken another unexpected turn.  I am not feeling well and I am just plain emotionally, physically and spiritually drained.  Right now, just breathing and walking around my house are taking more effort than they should.  I'm doing my best to compartmentalize this year in order to concentrate on my family.  I am trying my best, and mostly succeeding, to be present for them (instead, I'm over here fuming over this entire matter which should be a non-issue).  As you can see, my plate is quite full.  So please forgive me when it takes a few days to reply or when I don't reply at all.  Sometimes I just don't have the emotional energy to do so.  I have to pick and choose what receives the energy I do have, and most often, the recipients are my immediate family.  It's called prioritizing.  Sometimes, because I'm an adult, I recognize I don't have anything nice to say, so I refrain from replying to those particular texts and emails.  And yep, I'm human, so sometimes I just forget!  So yes, I just might be posting to social media even though I'm not replying to various forms of communication.  Why?  Because social media often does not require the headspace that responding does.  And quite frankly, if I want to take out a space in the newspaper, charter an airplane to write a message in the sky or rent a billboard all while not responding to communications--I can do that as well!  It's really none of your business.  Why?  You do not own my time and it is not my job to feed needy, fragile egos.  I do not owe you, or anyone else, a thing.  This is my life and I'm the one who decides how I live it.  

When a friend of mine is slow to respond or doesn't respond at all, I know it's not personal.  We are all living in a world of massive overwhelm right now and I'm okay with my attempts at communication being delayed or even disregarded.  A few of us exchange memes back and forth, understanding life is just too much most days.  We check in, we send jokes, we understand the other person most likely won't be able to respond--and as adults, we're okay with it.  We expect nothing (and certainly do not demand) from one another.  We love each other through life, accepting each other where we are, never attempting to force communication--and we absolutely know to not ever take radio silence personally.  I know my friends have lives, families, jobs and so many other responsibilities and obligations.  I also realize there are things I don't know about my friends, things which might delay a reply.   I understand that sometimes we, as humans, just need to shut down.  My friends just might be prioritizing.  I don't allow my feelings to get hurt--this is an active choice I make, but kind of feels like a no-brainer.  I do not jump to conclusions, I do not accuse my friends of things I know aren't true, I don't take to social media to complain, and, key point here, I know it's.  Not.  About.  Me.  In fact, I typically wonder if everything is okay, especially if such radio silence is unusual for my friend.  I might even reach out again a few days later to check in.  If I absolutely need a response, I'll circle back to double check if my friend even received my text.  The last thing I'm going to do is make my friend's lack of response about myself.

So, why I am explaining a concept most people understand?

Last week there were several texts I did not return, but I did post to social media.  Radio silence.  I did not have the capacity required to even reply "Thank you," but social media was there providing a good distraction. 

And someone took issue with it.

Rather than come directly to me to with her issue (Matthew 18:15-17), this person made a very snarky, very passive aggressive post to social media about it.  This person made an active decision to make it about her.  Before you accuse me of doing the same with this post, I did go directly to her and was summarily dismissed.  With two short sentences, she continued to make it about herself, then ignored any further communication from me.  I suppose she might've thought she was turning the tables, so to speak.  Or perhaps she's actually embarrassed by her behavior.  Who knows?  Who cares?  Nothing ruins good friendships like behavior like this.  Anyway, we're adults, so I handled it like an adult.  Speaking in not-so-hypotheticals, I named the above reasons in an effort to help this person understand where someone not responding to texts but posting to social media may be coming from.  I also spoke of the need for compassion, grace, empathy and understanding, and reminded her of Matthew 18.  Courtesy and respect go a long way.  I did not receive an apology.  What I did receive was the equivalent of a spoiled 5 year old stomping her feet while pitching a temper tantrum and screaming "I NEED ATTENTION!"

Folks, I just don't have the time, patience and energy for this level of immaturity and disrespect.  I really don't.  Grow up.  I don't know if it's age (I'm too old for this shit and life is too short), that I value myself more than I used to, or growing up with a mother with Narcissistic Personality Disorder (among others), but my tolerance for bullshit behavior is much lower than it used to be.  I've spent the past few days trying to move past this, but I'll admit I'm having some difficulty with it.  I'm extremely frustrated and upset with this presumptuous and audacious behavior.  It's awfully sad I have to discuss this at all.

I've said it a hundred times already, I'll say it thousands more:  We never know the battles another person is fighting, and assuming we do and believing we should take precedent in another person's life quickly leads down a slippery slope (to say the least).  Not just this time of year, but all year long, please remember everyone deserves grace and understanding.  Those go much further than an egocentric view of the world.

I Need a Silent Night

Amy Grant and Michael W. Smith are my two favorite Christian artists.  They have unwittingly written the soundtrack to my life.  At every stage, there's always been a poignant song which has hit home.

As a mom, two of Amy Grant's Christmas songs never fail to bring on the tears.  Breath of Heaven is one, I Need a Silent Night is the other:

"I need a silent night, a holy night

To hear an angel voice through the chaos and the noise

I need a midnight clear, a little peace right here

To end this crazy day with a silent night

What was it like back there in Bethlehem

With peace on earth, good will toward men?

Every shepherd's out in the field

Keeping watch over their flock by night

And the glory of the Lord shone around them

And they were so afraid

And the angels said fear not for behold

I bring you good news of a great joy that shall be for all people

For unto you is born this day a Savior, who is Christ the Lord

And his name shall be called Wonderful Counselor, Prince of Peace"

This song especially makes me realize the things--which aren't really things at all--I'm missing in my life.

It's no secret the past three years have been really difficult for me.  One of Amy Grant's albums in particular has been the accompaniment music to my grief.  I miss my best friend, I miss my sister--I desperately miss what might have been with both of them.  What should have been.

 I'm not over it, I'm still searching for comfort and much-needed solace.  I'm begging for a little peace right here.  PLEASE.  I need to hear an angel voice through all of this fucking chaos and noise.  I want to believe again that Abba is still good, even if not (Daniel 3:18).  I want my faith in humanity restored.  I want my life back to the way it was.  I want to laugh and smile and feel that genuine contentment I had.  I just want normal again.  I'm tired of learning lessons, I'm tired of--I'm just plain tired.  Christmas only makes grief that much more profound--the empty chair at the table, the laugh that is missing, the silence which becomes deafening.  Most days I can stuff the pain down, I can keep it at bay, I try to ignore it, I try to go on about my ways pretending that shadow isn't hanging over my shoulder.  However, even with the resounding message of hope, the holidays make it nearly impossible to ignore that looming pall.

Today, it's been three years without my best friend.  Three fucking years.  I still miss her as much today as I did those first weeks, as the shock wore off and reality sank in.  There's still an ache deep in my gut.  A feeling of utter anguish, with peace and comfort just out of my grasp. 

The funny thing is, I know Angie would shake her head at me for carrying on this way.  She'd be upset with me for my inability to move forward.  My grief would absolutely earn me a stern lecture from her!  When her oldest daughter died, Angie had these prophetic words for me, "I miss her so bad, but I know she's in heaven and I would never take that away from her."  I remember the look in my friend's eyes, her smile when she said that.  The moment we shared was tragic, wistful and oddly amazing at the same time.  I had no words were for her, but words were not what she needed.  Although neither of us knew it then, Angie was telling me how she wanted to be grieved.  I would never take my friend away from the beauty she gets to live with now, but there are so many things I want to tell her and there are still days I deeply want her back.  The stupid fucking god-awful irony of grief is quite often, the person you need to help you through the pain is the person you are grieving.  I need Angie to tell me how to do this.  I know she would want me to celebrate her life.  I also know the best way to do so is to stop mourning her so much, concentrate on my family and do for others.  That's what she would want.

At a time in my life when I no longer wanted to believe in God and I was so very angry at Him, when I lost faith in myself, no longer wanted to live and was making really stupid choices, when my marriage was failing and I knew I would lose my only child, Angie became a lifeline for me.  Complete strangers when we met, she immediately recognized my need for unconditional love and acceptance, my need for hope, my desperate search for belonging.  At yet another time when I needed hope, peace and the voices of angels amid the chaos and noise in my own head, Angie stepped in and stepped up.  

Easing me into a comfort zone, earning my trust, she first invited me to her home for what her church called "small group," a Bible study of sorts, but more importantly, a gathering of friends who became family.  Then she invited me to her church.  It grew from there.  I grew from there.  My family grew from there.  My marriage repaired itself, my mental health restored, my relationship with Abba healed.  Even better, I healed.  I no longer felt the daily need to escape, the daily desire to just check out.  

Angie was a gift.  Even when her own family often went without, she made sure the neighborhood kids did not.  She made sure those kids felt loved, she made sure they knew they had a family, she made sure they had a home to go to when they needed to escape their own chaos and noise.  Angie had the biggest heart.  This is how I choose to remember her.  The world is so much better for having had her light shine in it, and certainly at a deficit without her any longer.  

This is my request for today:  Be Angie to someone in need.  Carry on her legacy.  Help someone fight through their fear.  Help someone make it through another day, and then another, and another.  Be the calm in their storm.  Give them the anchor they need.  Hold the door open for someone.  Make a meal for a friend and leave it on their porch.  Treat a stranger to a meal or coffee. Tuck a note for a tired mama in the diaper aisle.  Hide a $20 with a Christmas turkey or under the lid of a can of formula.  Hand out flowers to strangers.  Hug someone who needs it.  Compliment a stranger.  Smile and ask how someone else's day is going.  Call a friend you haven't spoken with in a while.  Encourage someone.  Listen well.  Help someone find the peace they need, be that angel voice, help someone have that silent night we are all so desperately in need of.  Be someone's lifeline.  Lead someone to hope.

It costs nothing to be kind, and often takes very little of your time.  

Most importantly: Please, love big, love hard and love well.  

The world needs more Angies. 

Santa Claus and Toothpaste Words

Yesterday was a day here in our household.  

An hour-long tantrum was had by one of our children over his schoolwork.  We'd given him some extra chores for lying to us and mistreating us, and that only fueled his fire.

Capping off his tantrum, he screamed, "I KNOW YOU AND DAD ARE SANTA AND THE ELF AND I HATE YOU!"  A snide smirk, an absolutely hateful look in his eyes and a just plain nasty tone of voice accompanied these words, and he was trying to be loud enough for his brother to hear in the basement.  Judging by his tone and the look on his face, he did this to intentionally hurt me, knowing how deeply it would cut.  Even worse, he really seemed to want to hurt his brother.  The entire matter broke my heart.  In the words of our OTs and ABA therapists, I'm having a lot of big feelings--anger, shock, disappointment, frustration and the intense loss of my child's childhood, to name a few.  Even trying to write about it now, fresh tears are clouding my vision.

Important backstory so you are able to understand why this is such a profound wound: I LOVE Christmas.  As a 45 year old woman, I still want to believe (I'll never forget the Christmas morning a few years ago when all of the "sleigh runway" luminaries in our driveway were knocked over as if by the SWOOSH of a sleigh.  I remember jumping up and down while clapping my hands, grinning like a fool, thinking, "SANTA?!?!?!")!  By the time I figured things out when I was a child, my sister had two littles; I never wanted the magic to end, so I didn't say a word.  My love language is gift giving, which puts Christmas right up my alley.  I love the music, the memories (I was 35 weeks pregnant with Noah our first Christmas as husband and wife, and I listened to Amy Grant's song Breath of Heaven on repeat.  I was so scared and so excited and that song just spoke to me--it still does, but for different reasons now), the traditions, the decorations, the laughter and smiles and everything else about this entire season of HOPE.  I love doing everything I can to make sure Christmas happens for those who may not otherwise have it--I LIVE to play Santa (I don't even mind that he gets all the credit for our hard work), and as tired as I am of the Elf,  I love seeing my kids' faces light up when he returns, and the treasure hunt for him each morning.  As much as I dread having to reply every night to the many Santa letters my kids put in the Santa mailbox each day, I know I will miss this terribly when it's all over.  While I still have these moments with my kids, I'm doing my very best to soak them up.  I love the warmth of the fireplace, the cozy tree lights and allllllll the gaudy, tacky decorations my kids choose.  I love the daily advent readings with my kids, and on Christmas Eve, listening to my grandmother read The Night Before Christmas and the Christmas story from the Bible on a cassette tape my husband lovingly restored for me (she first recorded it when I was just a few days old).  Christmas is thirty days of "me time" while doing for others.  I nearly ruined the past two Christmases with my intense grief, so this year I'm determined to be okay because my kids need this, especially with Noah missing.  This is the time of year when every shitty thing can be brushed aside as we usher in another year of hope, symbolized by a tiny little baby born to humble circumstances, yet destined for greatness.  Even through all the tears I cry throughout all of these holiday festivities (I've always been a Christmas cryer though--happy, sad, reflective--those tears are going to come) and the heavy grief I still carry physically, as well as in my heart and soul, Christmas is still a time of pure joy and excitement for me.  Christmas is a time of restoration for my soul, my heart and my body.

Okay, back to the actual point of my story.

At the end of Avery's accusation, and before he could say anything else, I owned our Santa and Elf roles quickly, for Ezra's sake and hoping to avoid anymore screamed exclamations.  When Shawn and I talked about it later, he said he was going to try to play it off, but it all happened so quickly, he couldn't interject in time.  I just did not want Ezra to come upstairs in the heat of the moment and overhear any of it.  Immediately, I was angry, hurt and crying.  I could not understand why my child chose this way to hurt me so much, nor could I understand why he would ruin the magic for himself in such a tremendous way.  I understood even less why he felt the need to try to destroy the wonder of Christmas for his youngest brother.  I can be a bit of a drama queen at times, but when I say this has devastated me, I'm not exaggerating in the least.

When Noah was this child's age, Shawn and I talked to him about Santa, mainly due to fear he'd accidentally blurt something out in front of Avery (because autism, yo)--and, as I learned last night, Noah and I have very different memories of how it happened!  I remember it as a whole ordeal my best friend had to talk me through, as the idea of my child no longer believing in Santa absolutely shattered me:  How to tell him without crushing his spirit, enlisting him as Santa's helper, explaining why his dad and I chose to do the Santa 'thing,' as well as reminding him of the origin of Saint Nicholas, and connecting the love of Jesus to all of it.  Noah took to his new role, seemed to enjoy being in on the secret and even helped with the Elf once he arrived.  And please don't allow Noah to tell you otherwise--he loves giving gifts every year just as much as I do.  He's even laughed as he told me his goal is to outdo the Santa and parents' gifts (I quote, "I'm going to win Christmas this year!  PBBLLTTT!")!  Avery's declaration feels akin to the death of his childhood, whereas with Noah, it was an opening to a new chapter in his life.

As I relayed Avery's actions to one of my best friends, she replied, "Ohhhh those are toothpaste words.  Once they're out, you can't put them back in."  I'd never heard it put this way before, but that's PRECISELY how it felt (if you'd like to read more about the Toothpaste Words origin, here's the link: https://www.scarymommy.com/toothpaste-lesson-amy-beth-gardner/ ).  I'm quite certain Avery realized how badly he hurt me rather quickly because he did apologize, as well as backpedal, but it really was not a genuine apology, but more of a "Crap, I messed up."  We do teach our children to apologize (and we want them to mean it, so forcing apologies is out of the question), and we lead by example, but we also teach them they don't have to immediately accept the apology if they aren't ready to do so.  Last night, I did just that--I calmly told Avery I was deeply hurt by his words and behavior, so I just wasn't ready to accept his apology.  I explained further, as I knew this was his way of intentionally hurting me.  I did not withhold love, gaslight him, mistreat him or retaliate, nor did we punish him (I stress this point because that was how my mother--still--handles her anger towards me, and anyone else, for that matter).  I simply told him I was extremely upset and unable to accept his apology.

We've known for the past year or so that Avery's time of believing was coming to an end, but I was hopeful it would be an easy, understanding transition.  Given how dedicated Avery has been to believing, I wasn't even sure he'd say it out loud when he figured out the truth.  In past years, he's completely thrown himself into believing the magic, and this year didn't appear any different.  Because Avery believed so hard, Shawn and I threw ourselves into doing everything in our power to keep that magic alive.  I never could have anticipated the anger and spitefulness he exhibited last night.

Shawn and I really tried to be calm about it.  Emotions were already running fairly high and anything short of calm would've been counterproductive.  Knowing we had to protect Ezra's belief, but still address Avery's revelation and behavior, we tread carefully.  We explained why his actions were wrong, and discussed better ways he could have handled it.  As we did with Noah, we approached it from the Santa/Jesus angle, explained our reasons for Santa (wanting our kids to have that magic and hope, because we love them and want Christmas to be a time of fun and wonder). We stressed the importance of continued secrecy for Ezra, then we tried to enlist his help.  We tried to empathize, telling him we understand if he feels lied to, but again, explaining (malicious) lying was not our intent, only to add joy to the season because we love them so much.  Using the "toothpaste words" suggestion, we also talked with Avery about carefully choosing our words, especially in the heat in the moment.  We explained he can never take back the words he said.  Impulsivity and the inability to think ahead are symptoms of not just autism and ADHD, but the age and stage Avery is in right now.  I'm genuinely hoping the toothpaste example put things at the very least, in a partial perspective for him.

I know I need to find a way to move through this.  And I will, but in the meantime, if you need me, I'll be over here trying to cram this toothpaste back in the tube.