The OHT and Me

This time of year is what I call the Dark Time. The time between Halloween and February 19 of any year is the last slide for my boy from sickness into death. Halloween 2015 is when we had our visit from the Rainbow Connection (wish agency housed in Michigan, amazing place) to set up his wish trip, and February 19, 2016 is the day that Noah left this earth. He was sick, he was tired, Epilepsy had ravaged his body and stolen every independent act from him, and it was time. I know it was time, and I have zero regrets about understanding that.

This dark time is when the memories seem closest to the surface of my brain and heart. That it happened during the Fall and Winter, our two favorite seasons, is not lost on me. The grief seems heavier and more exhausting, the tears closer to the surface, the fog in my brain the thickest. The The social interactions required of the season are exponentially more difficult to navigate or initiate. And, most of all, the regret seems more contradictory.

It’s a contradiction, you see. The soul-deep, aching need and wish that Noah would still be here with me because everything would be just a little bit better if he were here. But I would NEVER wish what he went through in his last few years, and especially the last year, on anyone. He lost his walk, his talk, his fierce independence, to Epilepsy. He felt sick, all of the time. It broke my heart to know that, to watch that, to try and support him through that. For him to have the courage and the will to let go and leave the broken shell of a body he was left with was admirable and proved his strength of will to all of us. He is no longer sick, no longer tired, no longer seizing constantly, and for that I am grateful.

And yet, especially during this dark time, I am consumed by grief. The hole in my soul that was left when he died has ragged, painful edges. My world is less bright, less joyful, less every damn thing, because he is gone. Moms are not supposed to outlive their children. Period. I get angrier during this time over that. I get more exhausted during this time, carrying the grief. I want him back, and I want his life back, and I want his actual joy and laughter, love and light, not the memory of it.

The contradiction of this rips at me. How can I want him back, grieve so deeply, when I know, I absolutely know, what it would look like for him? How can I be so selfish as to want him to be here, celebrating the season, preparing for his favorite family trip of all, knowing, KNOWING, what that means? How can I be so relieved that my Little Biscuit suffers no more, yet be willing to do any damn thing just to have him back, living, on this Earth?

I don’t know what to do with that, especially now when the memories are so close and we are sliding face first into February 19. I am someone who needs definitive answers. I need definitive answers whether they be good, bad, or ugly; that’s how I work in this world. I don’t see shades of grey very well and I don’t sit comfortably with not knowing something. So what do I do? How do I shoulder the burden of this massive contradiction not knowing the answer?

I have no idea. I do know that I have surrounded myself with people who get it. Who hold space for me, who lessen the demands on me, and who understand that I am wrestling with some serious shit. They pretend not to see when I shut my door or show up somewhere with remnants of grief on my face (because there’s no crying here. Nope). They gracefully accept my lame excuses for missed social events. They initiate gentle contact, understanding that it might be a day or two before I respond, and they let me wrestle with this contradiction. They don’t try actively to make it better, but they give me the space and grace to figure it out. And it helps, tremendously, that I don’t have to put on a facade that everything is OK. I can just be who I am, and do what I need to do, to get through this dark time.

I don’t have any answers to solve the contradiction. Maybe someday I will, and maybe I won’t. But, five years later, I am beginning to accept that. I am beginning to understand that, if I stop fighting the contradiction and demanding answers, to move through it, it will get easier to carry.

I don’t know if the dark time will get easier. Maybe someday it will, and maybe it won’t. But five years later, I am beginning to accept that. I am beginning to understand that if I stop fighting with grief and demanding that it leave me alone, to move through it instead of fight my way around it, it might get easier to carry.

In the 5 years, 5 months and 3 days since Noah died, I’ve been on a journey of self-discovery and learning. One of the most important lessons that I’m coming to terms with is that my Grief is not a roller coaster, a hairball, a road to travel or any other example of something finite. My Grief is Infinite. Period. It doesn’t end, it doesn’t get less, it doesn’t wane and flicker out like a candle. What it does do, however, if I am willing and able to do the stupid hard work, is become easier to carry. It is my Permanent Baggage, and I am learning how to pack it in order to carry it more efficiently.

I got a therapist, way back when, and although we laugh about it now, I was obsessed with putting my Grief on a timeline. I wanted the behavior of Grief to be put on a documentation form, so I could discover its antecedents, find its function, and then work to replace it until I reached its target behavior, which for me was for it to just. stop. hurting. me. (yes, my Special Education people, I tried to do a Functional Behavioral Assessment/Positive Behavior Support Plan on my Grief.) Because something that hurt this big, that consumed me with an overwhelming pain, that made me want to cut my skin open to make room for it, had to have an end point. Right???

Wrong. My therapists, two at this point (one traditional, one reiki), albeit gently and with compassion, guided me toward the notion that there is no timeline, no predictable path, no “just wait it out and you will be over it”. I did not make it easy for them. I fought the concepts, closed my eyes to the work that I needed to do, and tried to do it my way. They were patient, and they waited me out. And, finally, I can’t remember when, I realized I was wrong. The more I fought to put my Grief into my perception of what I wanted it to be, the bigger it got.

So I opened my eyes, and I began to do the work.

You guys. This shit is hard work. It is not easy. It drains me, sometimes, to the point where I will sit on the couch, staring at nothing, incapable of doing much until I rest. Because in order for me to organize my Grief, I need to be self-aware. And in order for me to be self-aware, I have to bring the dark bits of me, the memories oppressed, the experiences that caused trauma into the light, examine them, understand them, and then put them into the Permanent Baggage. They don’t fit otherwise. (believe me, I have tried.)

It means remembering just exactly what the Others did to me, the trauma they inflicted, the feeling of safety they stripped away from me in order to control me. It means bringing that to the light–all the secrets I kept, all the memories I repressed, all the experiences I hid–examining them, feeling my feelings about them, learning to understand the consequences to my emotional self and my current/future reactions when triggered by them, and planning for those triggers. Then, and ONLY then, can it fit into the Permanent Baggage in a way that makes room for my Grief.

I’m a work in progress. For sure. But I can tell you that there has been progress. The question came up in therapy this week “what does it feel like when you are happy?” Three years ago, four years ago, even a year ago, I couldn’t answer. I was still immersed in my Grief; I didn’t feel safe enough to even think about or acknowledge all the work I needed to do. I couldn’t even fathom the concept of happiness, let alone what it felt like. But this week, (Jesus Murphy FINALLY, for those who are well-aware of my lack of patience for myself) I was able to explain.

I can feel happy now. I can be in the moment, experiencing and immersing in the joy and happiness that it brings to me. But, it feels different than it did five years, five months, and three days ago. It doesn’t feel less than, it feels different than. Now that I am packing my Permanent Baggage back into the backpack, piece by piece, organizing it better, I am carrying it more efficiently. The Grief fits into that backpack, most days, and I can carry it differently than I did in the beginning. Experiences can be filtered through the backpack in a much lighter way, for the Permanent Baggage, most days, feels more organized and manageable. It’s a delicate organization, though, and fragile, and still very new.

There are still days, more than I’m willing to confess, when the zipper breaks, something triggers my Grief (or my Trauma) and it all goes to hell quickly–baggage exploding everywhere and all I am left to do is pick it all back up, piece by piece, dusting it off and trying to fit it back in in the way that it will fit. But, now that I’m doing the stupid hard work, I know it will fit.

So you see, for me, Grief and I are linked together. It has its place in my Permanent Baggage. Some days it’s explosive, triggered by something, and it rises up, screaming for attention and refusing to go anywhere until I give in. But it is different now. Because once the explosion is over and the attention is paid, I can pick it up, dust it off, and gently put it back in the backpack where it sits, permanently there but easier to carry.

If I had been asked, before Noah died, which holiday I might predict to be the most difficult to get through, I might have picked his Birthday. Or maybe our favorite holiday, Thanksgiving. Or the anniversary of the day he died. Never, ever, ever would I have predicted that Mother’s Day would be the hardest.

I keep trying to sugar coat these words. I have started typing a thousand times in the last few days, trying to put a glossy sheen onto what I’m really thinking, what the Universe is nagging me into writing. I delete what I type, shut the lid on the computer, and distract myself with other things, shoving the feeling back into the Box labeled Don’t Think About That. But the feelings don’t go away. They keep building in my throat, the backs of my eyes, the permanent hole in my heart and soul where my boy’s spirit used to live. I keep trying to find a different reason for why this holiday is so difficult. I keep trying to find a strategy for making this holiday not so difficult, to gloss over it, to brush it off so I can hide behind the shield that I have built to hide behind when I need to face the truth. And the truth boils down to one question: Am I still a Mom?

For 18 glorious, amazing, difficult, heart filling and heartbreaking years, I was Noah’s Mom. Yes, I was other things–wife (and then thank the baby JESUS ex-wife), teacher, fundraiser, friend, and more. But my first, favorite, and foremost job title was Noah’s Mom.

And then he died. He got sick, and he got tired, and I had to make the most difficult decision I have ever and will ever have to make. And I had to figure out how life moves on and moves forward in the absence of doing my first, favorite and foremost job. And I shoved that question down deep, way deep, into the Don’t Think About That Box.

Because really. Who goes around asking that kind of question? How do you go about collecting data to get the correct answer? There’s no research out there. It isn’t an entry on the Wikipedia. People who love you will answer “YES, ya Dumbass. YES.” But here’s the problem. The head knows that is the correct answer. But the heart and soul? That’s a whole different ballgame.

My heart and my soul have Noah-shaped holes in them. They are empty, devoid of anything. They feel empty, and there is nothing that will fill them up. They are where all the things that made me a Mom used to live. I’ve learned that nothing will grow there, and that’s OK. I’ve learned that it doesn’t mean that I do not feel joy, it doesn’t mean that I do not feel love, or light, or full in the rest of my heart and soul. I can, and I do. But those holes exist, and I’ve accepted that.

My heart and my head do battle during this time approaching and on Mother’s Day when the question fights its way to the top of the Box. My head lists all the data-based reasons why I am still Noah’s Mom. And my heart and soul listen. But then they point to the holes and say “sorry, nope”. Over and over and over again. The memories bubble to the surface-the good ones, the ones where I can almost feel him in my arms again, almost feel the fullness in my heart and soul again, and the brain wins for a little bit. But then the heart and soul point to the emptiness and say “nope”. It’s a constant weight, this battle my brain, heart and soul wage during this time leading up to the Hardest Holiday. It’s a constant weight, and I’m tired of shoving the question back into the Box because it does no good.

I am Team Brain. Most of the time, I know and accept that I am still, have always been, and always will be Noah’s Mom. But during this time, this season of celebrating Mothers, the battle rages on. I have spent too long trying to interfere, to deny it’s happening, to send it back down to the bottom of the Box and slam the lid shut. I’ve learned it doesn’t work. I must accept that it’s OK to have two different answers to the same question sometimes. That it is OK to hold space for the battle, to lean into it. That, even though I know I am Noah’s mom, sometimes I don’t feel it and there is nothing I can do but breathe through it. Because maybe, over time, my brain will win and bring peace to my heart and soul.

I refer to the time between Noah’s Wish Trip (Dec. 7-13, 2015) and his Last Day (February 19, 2016) as the Dark Days. The phrase Dark Days means so many things depending on how they are used together. For me, it’s the last of the last. The days when, if I had known, I would have recorded them in minute detail. I would have logged every second of every day if I had known they would be the last I would have with my OHT. During these Dark Days, the grief seems to weigh heavier around the emptiness.

It’s such a strange feeling, this grief. In this fifth cycle, these Dark Days feel different. The emptiness is still there, the weight is still there, but it feels cleaner, less cluttered. I feel more able to look at, examine and even embrace the weight in order to process and live with it. I’m able to remember the last days, especially that last week, without the Flight/Fight/Freeze and helpless rage response it usually triggers. I’ve been wondering why it’s different this time.

So, I started doing the hard work, with the help of two (yes two. You do what you have to) therapists, collaborating and getting to the heart of what is different. This is what we’ve discovered.

These last five years I have embarked on a new journey, one that is just for me. For so many years, I had to live in a world of protector. I had to protect myself and my boy from the Others. I was forced to be constantly vigilant, looking for the moments when I would be blindsided by an attempt to breach our world and upend it. I was forced to live in Fight/Flight/Freeze mode because the Others were ever and always striving to cause conflict, attack my ability to be a mother and advocate, and threaten to take him from me if I were to have the audacity to ask for help. So I stopped asking for help from anyone. I constantly slicked over the reality of the mode I was forced to live in and projected an aura of all is well, nothing to see here, I can take care of this all on my own.

I know now that my reaction to the Others was off the mark a bit. My trauma reaction lumped the Others in with the others; these two groups are vastly different. They are polar opposites. The Others lived to attack and cause shame; the others lived to help and support. And my work these last five years has begun to shine a light on the difference between them. I have begun to do what I need to do to fix the damage the Others did so I can bask in the blessings that the others freely give. But in order to do that work, I had to feel safe. After decades of not feeling safe, I had to change my circumstances.

So I did. (SOOOOO not that easy as those three words indicate, but maybe that should be the next post). I feel safe every day, in my new world with a new job and a new house and new hobbies. I feel safe, and comfortable. And the grief is just as empty, and just as weighty as it always has been. But the difference is that now I can begin to walk side by side with the heavy emptiness. The Dark Days don’t scare me anymore. They don’t fill me with helpless rage at the things that the Others did in that last week and the weeks before and after. Because I feel safe, I can put those things in the box labeled “not my work” and set them aside. I can take those Dark Days out, wander through the memories and find the bits of joy. I can find the deep connection that we had, especially in his last hours, and know that when he left this earth, he left surrounded by my love and the love of the others.

If I can give any useless advice to lend purpose to this post, it would be to check in with yourself. If your grief is causing you to be afraid, or to be filled with helpless anger, know that it is possible for it to change. The work to change grief can be excruciating and scary in itself, but when you get brave, get up and get on with it, you will make it through to a world where you feel safe to grieve. And you might even be able to begin to walk within the empty heaviness, guided by the moments of joy you can now find.

Noah loved the holidays. He loved all of it, the decorations, the holiday-themed parties and events, the food, the music, and the time we spent with family and friends. “Holiday hoopla” was a phrase we tossed back and forth a lot.. Holiday hoopla is any sort of shenanigan happening during any holiday season, but especially in the Winter Holidays. When we’d shop and the stores would be overflowing with Christmas decorations, he’d point and giggle, “Let’s go check out the holiday hoopla, Mom!”. So, we’d wander the Christmas section at Meijer, or Target, or any store, checking it all out, and of course something ridiculous would inevitably fall into the cart as I fell victim to his giant blue eyes, oh-so-soft hand on mine, and sweet little voice doing the ask-but-don’t-ask maneuver “we could maybe get this one, Mom” (those who knew him know exactly what I’m talking about, no one who encountered it was immune to his ways)

His favorite Holiday Hoopla involved people. He loved to be surrounded by his people, especially at the holidays. There was such joy vibrating through his little body whenever he could put on a Holiday Tie and hang out with his Mimmy and Pops, Aunts, Uncles and Cousins. He’d sit among the chaos, listening and laughing, absorbing and returning all the joy and laughter, love and light swirling around him. Presents were a lovely addition, but they were not the central part of his love of the time. Give him an iTunes card (or three), maybe a pair of khakis and a dress shirt, and he was happy. For him it was the gathering of the people and his connection to the love surrounding him. And because he loved it so much, so did I.

I loved the holidays through him. The Others, that I’ve spoken about before, had done some damage to me, you see. For me, on the holidays especially, I had to be careful. If I dressed incorrectly, or laughed too loud, or bought the wrong gift (even if it was on a list somewhere), or hung the decorations wrong, or stepped out of a line I couldn’t see, or broke the unwritten rules that changed constantly, the holiday was ruined. I’m an excellent learner, and it didn’t take too many fights I couldn’t win to teach me that the holidays were not to be enjoyed, they were to be approached with trepidation and worry about how I would screw it up this time. Even when They were technically gone, the lessons remained burned into my brain. So I slapped a wall around it and tried to love the holidays through Noah.

He had enough joy and love to give that it worked. I could stand distant, behind the wall, and love that he loved them. And I could pretend that I was healed, free, and everything was OK. That gift giving and receiving didn’t give me anxiety over not being grateful enough, the gift I gave wasn’t good enough or thoughtful enough. That I was putting decorations in the wrong places, or they weren’t nice enough, or, or, or. I won’t bore you with the litany; rather, I’m not ready to revisit the whole litany. Noah loved all that, so I was determined to give him what he loved.

I think I succeeded. I have tons of memories that warm my heart that involve the holiday season. His joy at getting “khakis and the Swedish Chef”one year. (PS good luck finding the Swedish Chef from the Muppets at anything but a specialty store). Him tossing the dot to dot and coloring books over his shoulder, saying “These look like work” as he reached for the next one. His elation at getting the newest version of his iDevice, not letting anyone touch it so by-Jesus-Santa-had-better-have-set-that-shit-up-ahead-of-time. His pride at finding the perfect Christmas tie and then making the rest of us dress up on Christmas Eve, much to the uncles dismay. And sooooo many more.

It’s with gratitude at those memories that I’m working to unlearn all the conditioning from the Others so that I can truly channel his joy and laughter, love and light as my own. The holidays are a time for family, for gratitude, for celebration of whatever religion you come from or no religion at all. It’s a time to slow down, to breathe, to reflect and to renew. I’m working to find the pieces of me that went into hiding in order to survive the Time of the Others, to bring them forward, and to embrace and enjoy without the shame spiral I was taught by Them.

Of course, my boy is working his Universal Magic in support of this. Dragonfly Moments are everywhere, and every time I turn around it feels like I’m getting a Universal Throat Punch filled with grace and space to heal. His last message to me while he was on this Earth was a big one, and I draw on that quite often to remind me the conditioning of the Others is to be unlearned, dismantled and burned in order to be who I truly am. I’m learning to absorb the grace and space that surrounds me now, which helps unravel the shame spiral, which shines light into the corners of my soul. Sure do miss you, Little Biscuit. Let’s go find some Hoopla.

Singing and Dancing. From the first moments that my boy could speak and stand upright, he was singing and dancing. Music was his thing (I have the Smithsonian size historical display of iPods through time to prove it). His musical taste ran from show tunes, to heavy metal, to jazz, to Disney, to country and all the genre in between. He didn’t care. If it had a melody, he danced. If it had words (and even sometimes when it didn’t) he sang. Christmas and birthday lists always included iTunes cards, for there was always some new artist or new album or new song that he needed to have in his library. Looking back, I can see now how his near constant joy in singing and dancing saved me.

He taught me, so subtly I am only now realizing it, that if you can take just a minute to breathe, sing and dance, you can handle anything that comes at you. Examples, you say? Car. Dancing. Never failed. I’d be in the driver’s seat, he’d be in the back because Universe Forbid he sit next to his WEIRDO MOM, I’d be always focused on getting “there” on time–school, work, appointment, wherever, shoulders all hunchy, face all scowly because the drivers around me just would. not get. out. of. my. way. we. had. things. to. do., and I’d feel it. A soft hand reaching through the seats, sometimes with an earbud in it, and a voice saying, “Mom. Let’s do some Car Dancing” And, since I was not immune to his charms–no one was but that’s another post–I’d plug his iPod of the Day into the speakers in the car and we’d Car Dance. And my shoulders would unhunch, and my face would unscowl, and it would be OK. Every damn time. We’d still have places to go, all the things were still resting on my shoulders, but in that moment, I could breathe, hold the burdens more loosely, and Car Dance.

I have so many other examples, and as I write this, so many memories buzzing around in my head–Kitchen Dancing. Laundry Dancing. Driveway Bus Dancing. He trained me well: in the most stressful of moments, there’s always time for a little bit of Dancing. Did it make all the bills, seizures, illnesses, and constant worry go away? Of course not. I am not naive nor ridiculous. He knew that too. But it did, for the moment, force me to unhunch, unscowl, and take a breath to enjoy a moment with just my boy and me. To take a second to stop and drop into perspective all the things around me that infringed on my joy and my time with him, just the two of us in our little bubble of Dancing.

Toward the end, when his voice betrayed him and his body abandoned him, the Dancing fell to me to do. His touch and his voice became a look and a very small smile. Let’s Dance, Mom. And so I did. While my heart was breaking and my soul was shattering, I Danced. And in that moment, for that little bit of time, I could remember and put into perspective it’s about joy, it’s about time with him, it’s about unhunching and unscowling and taking a breath in order to make holding the burdens a little easier.

The burdens are different now. Grief, balancing work and personal, all the other outside shit that is weighing on all of us, and they feel just as heavy. They make me hunch my shoulders, and scowl my face, and feel sick inside with the “how will I?” and “when will it?” that can overtake and overwhelm me in seconds. It’s when I’m feeling my worst that I will finally feel the Universe Throat Punching me, and I realize my boy is saying, “Mom. Heidi. (if I wasn’t listening, I’d get ‘Heidi Strasser. I’m talking to you’) Let’s Dance”. I’ll fire up his iTunes, say “Noah, give me a song”, and inevitably something will come up that requires a little Dancing. And I will Dance. And maybe my eyes will get a little bit sweaty, and my arms will feel a little bit empty, but I will Dance, and my heart will get a little bit lighter. And my shoulders will unhunch and my face will unscowl, and I will be able to find again that little bit of Joy and Laughter, Love and Light that is his.

I am not a patient person. Once I’ve made a decision, I’m ready to implement. Immediately. Any delay is seen as an affront to my carefully stacked-for-maximum-efficiency daily routine. While it sometimes takes me for—-(wait for it)—–ever to make a decision, once that’s done, it’s Go Time. No looking back.

And then came Noah. From the day he was born, he gleefully blew apart my carefully-stacked-for-maximum-efficiency daily routine. And he and the Universe laughed, and laughed, and laughed with love as I would scramble, wasting energy and emotion on attempting to rebuild the tattered scraps of routine so that I could have my corner of the world controlled in a tidy little clutter-free box. Never happened. And eventually, I would give up, let go, and ride the wave of his joy and laughter, love and light with him. And it would be OK.

Man, he was so patient with me. Looking back I wish I had been the same, that he and the Universe hadn’t had to work so hard to teach me patience, to breathe and let go of the carefully ordered routine, to let go of the idea that routine means control means all is well with the world. To be patient, to wait and see, to understand that having patience did not mean having to let go of control. He was nothing but patient. Nothing threw him from his center of joy and laughter, love and light. Not a fever of 105 (yep. They went that high), not a day filled with back to back seizures with no relief, not a hospitalization where his treasured cool ranch Doritos were taken away to be replaced by a G-tube and no more eating by mouth. He simply waited to get through whatever was in front of him, as if he knew that whatever came on the other side of what was happening would be better. And it always was.

I, on the other hand, would get stressed, upset, worried; I would clutch the spreadsheet of the day to me, entering data as if there would be some sort of pattern to explain what was going on–seizure times, types, lengths cross referenced with fevers and medication times was my favorite. I’d hawk that data as if it had the answers to everything, wondering if my being 5 minutes late with the medication led to the latest firestorm of seizures which led to the infection that landed us at Mott Hospital for this admission. His neurology team would indulge me, and we’d go over it again and again and again. While he sat, king on the throne of his bed, silently getting his adoring nurses to do his bidding with a soft touch of the hand, a fist bump and a sweet, sweet smile.

He’d give me a Look. The one that said, “Mom. Settle down. It happened. No one made it happen, and now we are here, hanging out, being taken care of, and they will fix it. So come get on this bed with me and watch Despicable Me 2. Give up your spreadsheet and put it in someone else’s hands”. He, of course, meant the Universe, and I, of course, interpreted it as the doctors. And we’d wait, him with patience, me not so much, while he got through it and made it to the other side. He always did, and it was better. I can look back now and see that–the times we spent in the hospital were times I could put down the spreadsheet and the carefully ordered routine and get some rest. He was in expert hands, they took such loving care of him, and of me, and they made it better.

Looking back, I can see the Universe entwined throughout our lives. If I look closely enough, and if you are Universally inclined, we can see that these times when I had to give up the spreadsheet and put it into someone else’s hands were lessons. Lessons to teach that it is OK to stop, breathe, and be patient. Not everything is to be controlled on a multi-column spreadsheet. That, when the daily routine gets overwhelming and overlapping and I feel like I can’t get everything done, I should stop, breathe, and take one task at a time. And most importantly, when I am working through something that isn’t going my way, or isn’t what I perceive it should be, to just wait. If I keep moving forward with his joy and laughter, love and light, I will get to the other side. And it will be better.

I know Noah is in the other side, whatever that may be, and it is better. And that he is still working with the Universe, for sure. I know this because whenever I get that sick feeling in my stomach and tight feeling in my throat–the one that I get when my routine isn’t working, my schedule is so full I know I can’t get through everything, or something isn’t fitting into the picture I have of it, I get Universally Throat Punched. And Punched again, and again until I realize that I need to stop, breathe, and put it in the Universe’s hands. And it will get better.

Memories are funny things. Sometimes, most of the time, they live quietly in the back of my mind and in the bottom of my heart, almost like they are dormant. They feel like pictures-flat and two dimensional, with no depth or feeling. But sometimes, sometimes, they are so much more.

To understand the more, you need to know that rainy, chilly, post-work (and school) Thursday evenings in the Fall were our absolute favorite evening of the week. On Thursday nights there were no after-school therapies to rush to, no post-work meetings to rush from, no homework for him or me and nothing but Friday standing between us and the weekend. The fall weather was our favorite, not too hot, not too cold, and Episucky tended to be gentler to him. We’d pick up a pepperoni pizza on the way home, change into our comfy sweats and do nothing but eat pizza and watch a movie on the couch. (those of you who knew him can probably name what we watched, for it was one of the same five, over and over, and over…..)

Those nights felt magical; we forgot about the stress of therapy, of homework, of actual work, chores, bills, medical issues, fears, worries, and all the things that invaded the rest of the week. Having that Thursday night break made our weekend seem brighter and our weeks feel shorter. I cherished them, and I’m pretty sure he loved them too. That memory lived in the pile of picture memories until tonight. It was in the stack, sitting dormant, waiting for something to trigger it.

At the barn tonight, one of my people asked a question about dragonflies, and I got to share a little bit about what they mean to me and about who Noah was. And then, when I took my horse outside, and I was thinking about that, the weather conditions–chilly, rainy, Thursday evening with the scents of Fall in the air–triggered those picture memories to rise up and become a three-dimensional visceral explosion of feeling. It’s amazing when that happens; it fills my heart until it almost bursts out of my chest. I could actually feel him curled up next to me, with the dog at our feet, and hear our voices singing along to “We’re All In This Together”. Did it make me grieve? Yes. Did I cry just a little, standing in the rain watching my horse eat hay in the pasture so no one there would notice, and if they did I could say I got rain in my eye? Of course. (hello, it’s me. There’s no crying in front of people) But that little bit of sorrow is a fair price to pay for the full feeling in my heart. For the reliving of a cherished bit of time. For the lightness in my soul that reminds me to get brave, get up and get on with it. For the echo of the joy and laughter, love and light that he brought into this world that is now mine to share with others.

So, I say all that to say this. Please, ask. Ask me about him, share your memories of him, don’t forget to talk about him to others. You might be scared that you will get a little bit sad. You might be a little bit uncomfortable or worried that it will make me sad. Ask anyway. Share anyway. Talk about him anyway. And when you do, you might feel a little bit sad or uncomfortable, or worried, but the end result is exactly what he would want it to be. Worth it.

“…There is a level of investment that comes at a cost, because when you choose to press into that, you get great outcomes from kids, you do, but you also choose to press into the pain, for some people it’s too much, especially if it’s unfamiliar, but it’s worth the cost because the return on your investment is pretty powerful.” ~Mauri Melander, former principal, Lucy Craft Laney Community School

Triggers. Not the ones on the gun, although as we know, pulling those can cause a catastrophic reaction in their targets. Triggers are the things that can set off a catastrophic grief reaction in me. They are everywhere, and they are nowhere. They happen at predictable times with predictable things–start of the school year, during an event that I know, if my boy were alive, he would have loved, holidays, “(insert number here) Year After” dates, the smell of his shampoo, the lyrics of a favorite song we would car dance to–and at unpredictable times with unpredictable things, when only the Universe knows why, in that moment, it needed to aim into my soul and pull that particular trigger. Triggers themselves are not predictable (see my previous post about my love affair with spreadsheets and data tracking). What is on one day is not on another day. Like the seizures that ravaged my boy’s mind, body and spirit, they have no predictable pattern and no predictable outcome. But they always cause an emotional reaction of some kind.

For four years, I have fought that reaction. Because I’ve been trained by the Others that reactions of any emotional size are weak, that zero reaction is the only reaction to anything they may have said or done or implied about my parenting, my personality, my “denial” of Noah’s “actual” abilities and achievements and potential that I just had to accept and stop fighting the “reality” of. And they threw some real shit at me. I was “too dramatic” when I got angry at their passive-aggressive narcissism, I was “over-emotional” when I questioned the actual evidence sitting right in front of me, I was “perhaps not fit to handle it” when I asked for more support, and so much more. So. Much. More. Every reaction had an overwhelming response coming back at me that what I saw IN FRONT OF MY FACE was wrong, what I was feeling was too much, too dramatic, and not really warranted for the situation despite the evidence. The worst and most effective for training me, that they used with unerring accuracy, was that my reactions might be evidence for the Others that I was not fit to be a part of my boy’s life.

So, I learned. Emotions were not healthy, no matter the evidence in front of me, reactions must always be tempered and boxed up and shoved deep down inside because they might be wrong or used against me, and that strong feelings and emotions must always be hidden deep inside and protected from them.

And then, Noah died. He was tired, he was sick, and he needed to shed his body riddled with disease, waste and atrophy to find the Universe so he could be free to spread joy and laughter, love and light to our world. While I understand it, and I’m so grateful he is no longer in pain, I’m grieving. Hard. And I was fighting it. Hard. Because I was trained well by the Others. I went back to work a week after his funeral because I thought normalcy, a routine, the day-to-day schedule would help me fight this grief business the way it helped me to survive my training.

I’m sure those of you still reading this know exactly what I’m about to say…….

Yeah. It didn’t work. Grief doesn’t fight fair. It had no fucks to give me and my training. It was determined to make me feel, to react, to do what I needed to do to process what happened. Let me say that again. To do WHAT I NEEDED TO DO to process what happened (my therapists are fist bumping each other right now).

So Grief and I fought. I would shove my trigger reactions into the box until I got so overwhelmed I had to get somewhere where no-one could see or hear me, lose it so completely and totally that I would feel sore and need to sleep afterward, and emerge to rejoin the world and pretend it didn’t happen. And I put my game face on and did my best to convince everyone that I was fine.

(Those who know me, who are in my inner circle are laughing their asses off right now because I absolutely did not convince them. But they let me get away with it, so thanks for that fam and friends)

I got tired, and I got sick far more often than I should. And after some time, an amazing life change (Looking at you, Tiger Pride), and some seriously intense therapy from some (yes, some) gentle, kind therapists, I am coming to realize that fighting just makes it harder. I am starting to absorb the idea that *maybe* the Others were wrong; maybe they needed to control me so they could make their stupid, narcissistic, dumbass, and ridiculous selves feel better and feel righteous in all the wrong they did to the OHT and me. That it’s OK to Grieve Large over the worst thing that has ever and will ever happen to me. That, even though I have gratitude for the life he lived and the freedom from pain, I can be ANGRY, and SAD, and ALL THE THINGS because my arms are empty, my heart aches and there’s a piece of my soul that shredded to bits the moment Noah’s soul escaped from his body to fly free and unencumbered.

So now, instead of fighting, I’m practicing. The trigger comes, and I sit still, absorbing it and letting it wash over me so I can feel the feelings and react the reaction. I’m pressing into the pain. I’m testing it out, learning to live with it instead of fighting it or forcing it into the training box deep inside me.

It’s not going away. It won’t go away. I’ve begun to accept that. To press into it. I am slowly discovering as I practice that it doesn’t mean the Others have won. That I am weak, ineffective, dramatic or “too much”. It means that I went through the worst thing that has ever happened or will happen to me and It. Is. OK. to be emotional, to feel hard core and react hard core. And that doing that means I am being authentic. Which is all I can ever hope to be.

Change is hard. Period. I also don’t do well with chaos; as a matter of fact it makes me slightly nauseous. I thrive with a predictable routine and I absolutely hate being blindsided with spontaneity unless you give me a head start on preparing to be spontaneous. Don’t mistake that for a hatred of risk-taking. I love a good risk, as long as I can research it for a (preferably significant) period of time, analyze the pros and cons, project how it may or may not affect my budget, run a few (dozen) impact scenarios, and then sit with my spreadsheets reviewing the data over and over. Case in point: I bought myself a tattoo for my 40th birthday, and it only took me 5 years to pull the trigger on it.

So, knowing this, the Universe created the OHT and flung him gently into my arms and heart in 1997. “Don’t like change? Meet your son.” And then It sat back and laughed, and laughed, and laughed at my futile attempts to control the outcome of the millions of change moments that were launched from the minute he drew his first breath. No worries, It also gave my boy the fighting spirit of a fierce warrior, the sense of humor of the best comedians, and the gentlest soul filled with joy and laughter, love and light that I have ever encountered. My boy used all of that to teach me about change, and chaos, and going with the damn flow.

Man, I tried so hard to control everything. I would put us into a routine, things would cruise along for a bit of time, just enough time for me to think “OK. I have a handle on this parenting thing. Making progress, all good, Others are quiet, Heidi is in control!” And then wha-bam. A fever, high enough for a trip to the ER and time off work. Or an email/call from an Other, reminding me that they really weren’t quiet, they were just lying in wait to blindside me. Something would drive a stick into my carefully spinning internal orbit, shattering it and hurling the debris of my perceived control all over the chaos that ensued. And I would go off the rails, sliding down into a shame spiral from the inability to keep control of the uncontrollable situation.

I spent a lot of time trying to control the uncontrollable. Change is inevitable, I know that, but I hated change and the chaos that came with it. In my mind, they went hand in hand. Internally I was a mess, trying to anticipate change and mitigate the chaos that ensued. However, along the way, I discovered gratitude for my boy and what I thought were his coping skills. Nothing, absolutely nothing, shook this kid from his center of joy and laughter, love and light. Fever? No problem. Off to the hospital to charm the nurses and doctors. Others being Others? Meh. Smile gently, dismiss them thoroughly and move on. Sure, he got angry, and sad, and frustrated. But he expressed it in his way, and then he moved on, letting none of it sit too long within himself. Self-regulation, thy name was Noah. He never once allowed change or chaos to move him from his center. Which, in turn, allowed me to return to center and continue the fight. Turns out, it wasn’t his coping skills. It was his spirit and soul.

I think, now that I can look back from a distance, that he didn’t equate change with chaos. Change was one thing, and chaos was another. He didn’t fight with them the way I did, and still do sometimes. He didn’t waste his energy on trying to force calm into a situation. He stayed calm during the situation. And because he did that, he could absorb and accept change and he could absorb and accept chaos. Which left more time for joy and laughter, love and light.

It’s a lesson I still struggle with, a lot. When I find myself swirling in change, I can usually remember to absorb and accept and even embrace it. When I find myself heading toward chaos, I can sometimes remember to absorb and accept that is only temporary. It’s when the two come at me together that I struggle and forget that one doesn’t cause the other and that I cannot control the uncontrollable. However, when that happens, the Universe never hesitates to Throat Punch me with a Dragonfly Moment. Or two. Or three (I said semi-reformed, remember?) Then I can stop, breathe, remember his oh-so-soft and gentle hand hold, his laughing blue eyes, and his sweet, sarcastic voice asking, “Mom. You having a little freak out there?”, allowing me to separate the two, relax, absorb and accept, and to go with the damn flow.