Strip Me Bare

Last year, they were probably heard screaming through to the second floor of the clinic, and there were fights…battles…battles that they did not win. No one did.

A friend shared a link on social media yesterday, and I read every word, as often I do when this particular friend posts things. If she finds something worthy of her time, I know it will be worthy of mine. What I read was a post on the toll taken by the coronavirus from the perspective of writer and blogger, Helene Wingens; I have shared the link below. The words which spoke great truth to me were these: “Being the keeper of everyone else’s sadness and hurt (even if I am self-appointed) is heavy. So heavy.

Heavy, indeed. These resolute words were a painfully accurate summary of how I, and certainly many others have felt about what is going on around us these days.

As I read, my feelings took me elsewhere, to a place inside of me that evoked a similar level of exhaustion and fear, but for very different reasons. As with any art form, the viewer, the listener, or the reader will find meaning in its interpretation. We will make sense of what is before us from our own experiences.

I never liked getting shots, but what seems far worse is watching my children endure a similar fate. As a two-year-old, Elliott had to have a lead screening for preschool class. I was the anxious and fearful one: a young mother more than half my lifetime ago. I remember taking the stoic boy to Burger King after the appointment. My sense of relief must have been palpable as we ordered our Whoppers and as Elliott donned his cardboard crown.

For these years sprawling into decades of throwing my best effort into parenting children with trauma and mental illness, I have certainly tried to hold the sadness, hurt, fear, grief, and anger of my children. Often, though, it cannot be contained. It flows from me, as from my child, and we drift from one another through trials and misunderstandings, displaced anger and defeat, perhaps even to be washed away entirely, back to nothingness, where we are stripped bare of all that we have.

I took the three little boys for flu vaccines yesterday with the promise of not Burger King but Nerf guns from Target after the battle, which somehow was not even a battle. They knew. The magic of one child’s medical cannabis regimen along with new psychiatric protocols for the others might have a bit to do with how things went this year, but we made it through. Somehow, we have arrived at today. It wasn’t easy.

It’s just a short time here, really, to be full of so much that cannot be understood. Just maybe, we are not fit to try to understand.

Maybe there really isn’t going to be a watershed or a life-altering turn of events. Perhaps things will really begin to get easier. Perhaps we will get used to how things are, and for this they will seem easier. Maybe the hard things that I hold so tightly will not seem quite so hard anymore.

The littlest boy, equally brave yesterday as was his big brother Elliott some twenty-seven years ago, kept his bandaid carefully in place “in case his arm might hurt.” At some point this evening, he was ready to take it off. He asked for my help, because he was worried that it might hurt. As I stripped the superhero bandage from his tiny arm, I knew that then that the true healing could begin.

For my big kids, most of whom have historically cooperated with their vaccines, thanks for seeing me as more than I am, and for believing that I am worthy of your company. I will be ready when you find your way home.

Here is the link to Helene’s writing which inspired my blog post:

https://grownandflown.com/exhausted-moms-these-days/?utm_source=facebook&utm_medium=socialflow&fbclid=IwAR2wA_N9PJrFQlWZ56xBkvb4ahgk3KBBQziGbtsP16UYmF-_I6E3xZ4gUcE

Let Me Be Your Lesson

“Everything is either a blessing or a lesson.”

Who was it that said that, anyway? Maybe, some things can be both of those at the same time.

Perched on top of the hill at the edge of my grandparents’ property, my brother, my sister, and I spent strings of days looking out onto the St. Louis traffic, wondering who inhabited the curious round apartment tower building, talking about where we could hide Grandpa Gene’s cigarettes, and dreaming of getting a can of Faygo Redpop from the grocery store across the highway. I think my body still hurts from rolling down that grassy slope so often during my childhood. I wonder how many times I narrowly avoided my demise by slowing just before I rolled a little too far.

Grandpa Gene would offer me a dime to pick apples from the tree that stood perfectly in the middle of his backyard. He would sit on the glider swing, eyeing the birds splashing in their pristine concrete bath as he coached me.

“You missed one,” he would laugh, but he was not joking. The shiny-skinned, gold- green apples were plentiful, with leaves rhythmically fertilized and untainted. Grandpa would send me inside to collect my dime after his carefully-directed harvest was complete. The apples, though, didn’t taste very sweet. At least, I didn’t think so at the time.

Every so often, competing for space with the swirl of “to-do’s” and “how-can-I-possibly’s” in my brain, a thought presents itself. This time, it was “blueberry Toasties.” When we were lucky, our grandparents would take us to the Howard Johnson hotel diner. There, I would have a special breakfast of two little square corn cakes, stuffed with blueberries and slathered in butter. I would cut the bites as tiny as possible, so the Toasties, which somehow were crunchy but melted in my mouth at the same time, would last as long as possible. Toasties may have come in other flavors, but I had never wanted to even explore that possibility. At some point, Grandma Evie found blueberry Toasties in a box at the grocery store, so we didn’t even have to wait to go to the diner. Maybe that was when they stopped tasting so good. Then, I forgot about blueberry Toasties for nearly fifty years.

Our end-of-the line child, our runaway caboose, starts kindergarten this fall. Thirty years of catch-up projects and neglected home keeping chores will have to wait just a little bit longer, as this boy and his brothers will be home at the farm this fall. We never expected this. Nobody did. His voice might plead, “Let me be your lesson, Mama.”

Sometimes, I do hear voices. It is no secret that we are bound here by mental illness along with the foreboding threat of our world, but these voices come from within with an unmistakable fury. Maybe no one else hears them at first, but as with the insistent cry of a child in the dark of night, I must listen.

Some years ago, my brother and I were traveling by airplane. From somewhere in the air above the seats in the cabin, a gravelly voice simply stated, “p”. This was particularly curious, as sometimes I was called “P” by my brother or sister when they may have felt that two syllables were too much. More letters came from the elusive voice. The mystery was solved when we realized that the man in the seat ahead of us was playing “Scrabble” with his seat mate.

Through the years, voices have called us to adopt, to foster, to move to the country, to campaign to legalize medical cannabis for autism, to raise chickens, to start beehives, and, most recently, to make blueberry Toasties. The “goat” voice, I hope, will come soon. Sometimes, the message has been in the form of one of my children, a friend, a flower, a newspaper, a tree, or a bird. And sometimes, for certain, it has been that of God.

Our little orchard at the farm has grown. I believe we have seven apple trees now. Two years ago, we were delighted to spy the first apple on one of those trees, our Colonnade Flamenco. We watched it grow, all alone, and we shared its sweet goodness on harvest day. That was the one and only apple in the orchard, until this year. Dismayed by rust on the apple trees and determined to use natural methods to care for our homestead, I have not held much hope in filling my apple basket anytime soon. There are, though, three perfect baby apples growing on one of the young Golden Delicious trees now. The voice of the young apple, looking very much like those that grew on Grandpa Gene’s tree so many years ago, pleads: “Be patient. Don’t doubt yourself. Keep going. It’s going to be worth it.”

I wondered if somewhere in the world of Pinterest or Google, someone else had remembered Blueberry Toasties. Indeed, with a little pinch of this or that, the memory of my best childhood diner breakfast became a reality.

Here’s how I made them, if anyone wants to experience the nostalgia first hand:

Blueberry Toasties, adapted from “Nancy’s A Recipe A Day” blog

This time, the lesson was easy. Crisped to perfection, dripping with the combined intoxication of blueberries and butter, my breakfast advised, in a voice that was nearly audible, “Don’t forget. Don’t forget the little things that you once loved.”

Would Faygo Redpop be bad for my kids? We could always have it along with the apples once they ripen, to balance things out a bit. That would definitely be a blessing.

A Chicken Gets Her Wings

Love, young love,

I hope you are well.

At least we now both

Have a story to tell.

—Keaton Henson, “Sarah Minor”

I should have known by the way she spun in a circle as she moved among the pine shavings, even somersaulting as she crashed into the other chicks. Sometimes, she kept one eye closed.

Soon, she couldn’t stand up without tipping over. It turns out she was “stargazing”, looking skyward, for she had wry neck, a neurological condition perhaps due to a vitamin deficiency or an injury sustained during her travels to the farm.

If she had a fighting chance, we were going to give it to her. We held her tiny yellow body. We fed her electrolytes with a dropper. We positioned her in a little cup filled with soft pine shavings. We kept her warm.

Still, Sarah Minor made weak little peeps as she continued to look to the sky. She didn’t seem to be getting better.

Chickens already have wings, so getting to heaven would be easy. She wouldn’t need angel wings.

All of the little boy’s sadness came through the five-day old chicken whose stay here was short. His own life’s loss and grief came as tears for a lost soft feathered friend. There were other chickens in the flock, but none was Sarah Minor.

“I think I just felt her going to heaven,” said the boy.

Sarah Minor died.

We wrapped her lifeless body in a soft white cotton cloth embroidered with tiny white flowers.

We set her into the farm’s earth, tied up with all her little chicken hopes and chicken dreams. Sarah, we were so glad that you came. Even though your time here was short, we know you visited for a reason.

Sarah, I love you.

A Piece of Crap

I had a dream that I lost little Gabriel, only he was somehow also Moses. We were at a medical appointment at a hospital. He was with me in the lobby, and then he wasn’t. I heard his little voice cry out, “Mama”, but just once. I looked and looked, but I had lost him. At some point, I had left the hospital, without my little boy. I was the very apologetic backseat passenger in the vehicle of an athletic coach of some sort and his child. My eyes would not open, though I was awake. I knew I had to get back to the hospital; that was the only chance I had to find Gabriel. I thought of his sunny curls and of how frightened he must be. Why had no one called me? Who was taking care of him?

I have been dreaming hard lately, waking to remember only what I hope were the most unsettling parts of the midsummer nights’ reveries. If we dream our fears, I should be scared.

At two or three in the morning, when my mind’s chaos had quieted, I woke to a small, gravelly voice. “Piece of crap. You’re a piece of crap…” I waited, having learned through vast experience that little beings might return to sleep if the house remains otherwise quiet in the dark of night. Sometimes, though, they speak again.

“Chocolate milk…” came the same voice, an hour later, a bit more intentional this time, and coming from the mouth of a tiny boy standing one inch away from my head. I had two choices at that point: I could creak down the stairs on tired legs to pour a cup of chocolate milk, or I could forget about anyone in the house getting any rest at all until sunrise. He’s persistent, that little one.

“I hate you, Mom,” he said as he reached for the cup through the shadows of the bottom bunk. After a few swallows he handed me the cup and, thankfully, returned to sleep, or at least to quiet.

Two nights in a row, I had served chocolate milk when they should have been sleeping.

Two days in a row, I had been called “stupid” by two different children, both mine. I could have retorted that I graduated fourth in my high school class of three hundred nineteen, but they would have leveled me with some sort of remark that, indeed, proved their points, and that I also knew had absolutely nothing to do with me.

I wear a mask to keep others from catching the bad things that may come from within. I can’t keep the anger from coming from the mouths of my hurt children, nor would I want to do this. Curiously, though, the youngest here wear their virus masks like champs.

We painted at the kitchen table as we often do during these long days at home. Moses called his artwork “a piece of crap.” Perhaps he didn’t think it measured up to that of his older siblings. He didn’t seem comforted when I told him how beautiful I thought it was, nor does he seem comforted when I tell him how beautiful I think he is when he has declared himself a “stupid piece of crap.”

Sometimes I feel like I am losing little Moses, to the depths of chaos here at home, to the familiar yet unslayable beast of mental illness as his childhood spins out of control. We can’t cover it up with a mask or otherwise. We have good people, and we hope that we are doing the right thing.

I don’t know if I ever found little Gabriel in my dream; I am not sure if he was really lost or if he was just away for a time when I had no control, no way to know. And I have no idea who that athletic coach was or how I got in his van, by the way.

In the end, I believe Moses will be okay, too. I believe that we all will be. We have our masks to wear and our collective wrath to unleash. The uncertainty of the darkness through the long wakeful nights always yields to the sunrise, which reminds us of the greater rhythm. And for those up before the sun, there’s always chocolate milk to make it better. I can hear your voice.

I have been dreaming hard lately, waking to remember only what I hope were the most unsettling parts of the midsummer nights’ reveries. If we dream our fears, I should be scared.

Loss

It’s helpful, necessary, and smart. It’s good practice. Also, it’s terrifying.

There’s no more solace to be found in the garden these days. “Put them to work with you,” advise the well-intentioned folks who do not understand my reality of the transformation of a tiny farmer that uses a three-quarter-scale shovel to scoop compost into a wheelbarrow, only to turn (in the time it takes to pull two weeds) on a brother who had let his thoughts escape into words. I can only hope to reach the angry pair before the shovel strikes.

It’s the images of the masks which hide the faces; the hands, including mine, fitted with gloves; the grocery store carts topped with hand sanitizer and bleach as though a disinfectant sundae was on the dinner menu; the plastic shields intended to protect the brave cashiers who come to work so we can eat; and the heaviness of fear, both known and unknown, that’s terrifying beyond measure. Terrifying, too, is that we don’t really even know what we’ve lost.

Maybe I should have wiped down all the packages from today’s supply runs. I didn’t. Maybe I just needed another thought to wake me at two in the morning, when the boys are actually sleeping.

I had envisioned a brightly-colored piñata hanging from the tree in the sunshine, with my little line of children barely able to contain their excitement. It would be a treat for us all during this time of uncertainty. The box came from Amazon, but I told them it was a surprise for the next day. One boy became incensed; he didn’t like surprises, and he hated me. “Sorry! It’s a piñata,” I blurted. “I thought it would be fun.” At that, another brother announced that he, too, hated me, and pretty much everything, because I had ruined the surprise.

Next, there were cartoon-style clouds of body parts swirling through the air to the tune of an anguished choir. Maybe we should have called for help. That concept, too, is terrifying for so many reasons.

Come tomorrow, I will have to decide what to do about the piñata. It might feel good for all of us to take a turn at striking.

There’s so much loss going on all around us…so much on top of what’s already there, most of which may be hidden so deeply within that we cannot call it up. It must come on its own, in its own time.

It’s hard to know how to help my children through all of this, when my band of supporters must keep a social distance or communicate over a screen.

Maybe it’s like hitting a piñata, where finally all the beating and shaking becomes too much, and it just breaks apart. What it once was is lost. The masks and sanitizer will just help soften the blow.

I did manage to get some seeds in the ground earlier in the day. In about a month, my lettuce will be ready to harvest, and soon I will be able to transplant the seeds that we started inside. There will also be sugar snaps, beets, and carrots to follow. By mid summer, I hope that we will have stored our medical gloves and masks away. I hope for a lot of things. We all do.

We’ll try to record our piñata adventure, if it even happens. My guess is that everyone will be lined up and ready to take a swing. Even me. Especially me.

A Hero’s Hand

“Don’t let anyone say that it’s just a game…”

A friend mentioned that in just a few weeks, it will be time for pitchers and catchers to report to training camp. He didn’t really have to remind me, though, as I have been looking desperately forward to a fresh season since my befallen heroes hung up their cleats as the ivy turned last year.

There had been momentary struggles with this boy through the years, the most epic of which paled in comparison, though, to the regular antics of a couple of his siblings. Aaron had been through much in his ten years: the losses that come through foster care and adoption, obscure medical issues plaguing his early childhood, and growing up in the shadows of the chaos of mental illness. Aaron was often the target of the wrath of an older sibling who needed help carrying a burden, the target of misplaced anger and fear born from the confines of a tormented mind. This, certainly, was hard to bear.

There was an escalation in challenging behaviors. Something had changed; a limit had been reached, perhaps. There was much more conflict at home, provoked, even, by the child that had often found himself merely in the line of fire. There were calls from school, disciplinary measures, and consequences. There was rage, anger, and sadness…great sadness.

The harsh weather hit early last fall. My little boy came in from school with a bit of an extra skip in his boots one afternoon; this had not been his recent pattern.

I asked how his day had gone.

“Great!” He flashed the smile that I had been missing for too long. “I saved someone,” Aaron proudly announced as he went about putting away his coat.

He went on to tell me that just as the students were filing out for dismissal, the fire alarm had gone off. Notoriously pokey, he had been the last to leave the classroom, along with one other boy who was, according to Aaron, scared and crying. He told me that this classmate had trouble with one of his hands, and that it didn’t always work because of something that had happened when he was a baby. On that day, the little boy stood, frozen. Aaron put his hand on the boy’s shoulder, and the two walked out of the classroom and safely out of the building, together.

“Give us the chance to feel like heroes, too…”

For a while now, Aaron has been doing great. I haven’t heard of any disciplinary measures at the school, and he has worked hard at home to be a peacemaker with a tough crowd.

We asked him what had changed, and he didn’t hesitate: “It was when I saved him from the fire, Mom.” To him, it was a simple act of heroism that altered the course of his behavior in the direction of positivity, courage and bravery. It didn’t matter that someone had pulled the fire alarm. Aaron had saved his classmate and saved much more in the process.

“And here’s to the men and the legends we’ve known
Teaching us faith and giving us hope…”

In a few short months, my hero will be back on the baseball field, giving new hope to the game as we cheer from the bleachers.

Maybe that little spark will be the one that ignites the fire for him to see just how brightly he shines.

To some, it’s just a game. To the rest of us, it’s a whole lot more. XO

Lyrics from “All the Way”, Eddie Vedder’s tribute song to the Chicago Cubs

Fostering Words: Love Isn’t Enough, But At Least It’s Something

As a fresh spring chicken of a foster parent, I was given by one of my dearest friends a candy-pink shirt with the words, “Love is Not Enough” boldly stated for all to see. This puzzled me just a bit. “Hmm…we’ll see”, I thought to myself, as I wore it with pride.

That was about fifteen years ago.

Love, most definitely, is not enough.

Sometimes, I truly feel that I may have learned more about things through unfortunate experience than the professionals to whom I have brought my children for expert advice. I have felt the thoughts of some:

“You are making this up.”

“This is not a big deal.”

“I just don’t see it.”

Others, certainly, have sympathized. Many have been helpful. Some have been compassionate. Some have made me feel like I am doing it all wrong.

To that, I turn to look at my grown children, who come home to us, who remember what kind of soap I like, my best coffee drink, or what era vintage pottery makes me happy, who carry my groceries, who make a positive difference to others in their adult lives, who love me and whom I love, desperately.

And how I have loved, too, the little ones. Love alone, though, as I have seen, isn’t enough.

It’s not enough to melt what’s frozen inside, nor is it enough to erase the things that happened, perhaps, at the hands of the unknown. Not love, not anything, can make the hurt go.

It can, though, make the path just a little easier.

Lots of people talk about trauma these days, and it’s effect on the developing brain. Trauma changes people. Trauma also changes people that love people that have endured trauma.

As a foster parent, I learned a lot about behaviors that children who have been abused or neglected may exhibit: puzzling, disturbing, hard-to-handle behaviors.

Over the years, I have participated in several trauma workshops and classes. I have taken my children to therapists, neurologists, psychiatrists, psychologists, naturopaths, spiritual healers, and other specialists that may or may not have been able to make things easier or more understandable.

I have lain awake even on the rare nights when everyone else slept, worrying, wondering, and feeling all the things that could possibly fit inside of me.

Not long ago, a thought came to mind:

  • “Are we really helping these children to whom we have opened our doors? Are they better off in our care than they otherwise might have been?”
  • Sometimes, the answer is obvious. Often, though, it is more elusive.

    Multiple children come to the door wearing only the clothes on their backs but carrying much more than we can see. They bear witness, as do I, to the pain of one another until things are so mixed up that we can’t tell where the behaviors began.

    One child finds a peaceful space, but another must interrupt with his own, new found chaos as this is all he has known.

    So in trying to offer a safe place, have we just added to what is hard?

    I know there is no real answer to that question. There can’t be.

    Earlier in my tenure as a foster parent, I had often thought that it would have been helpful to know as much as possible about the pasts of the children in my care, but over the years that has really changed for me.  I feel like my job is to meet them where they are, and to help them embrace who they are, even the hard parts, and to let them tell their stories as they are ready.  It’s a hard job: it’s hard to be okay with just being, instead of always attempting to be helpful or trying to find a solution.

    I just hope that they will look back at the footprints one day when I am an old hen and see that they were deeply loved through the silence, and though love may not have been enough, at least it was something. And just maybe, they will return, with or without coffee.

    As for the pink shirt, I am not sure what became of it. My friend, though, was right.

    The Long Winter

    On most nights before the boys go to sleep, we have been reading the Little House books for close to a year now. I love the stories of honesty and simplicity, of struggle and triumph, of bravery and tenacity. Here at the farm, we love tapping our maple trees, picking dandelions and Queen Anne’s lace for making jelly, gathering eggs, and harvesting what we have planted in our garden. We love exploring the forest and sitting by the fire when the moon is up with the stars in the sky, and the boys love when their musical daddy sings to them or plays music on pretty much any instrument that he comes across. We also love coming in to our warm house which is bursting with the conveniences of today, and where we don’t have to worry about a bear sneaking through a makeshift curtain to torment us (or worse) in our sleep while we wait for Dan to build a proper door.

    We don’t have to go back to some of the hard things. We have come so very far.

    Last year at this time, as the cold set in, we were planning for a wedding. Our visions were often blurred through the snowflakes, which seemed to come with more strength and fortitude than in other winters. As the seasons turned, the weather didn’t, until the rain replaced the snow and ice. We reluctantly imagined wedding guests wearing rubber boots and holding onto their hats and skirts during what we had hoped would be a midsummer night’s dream.

    And it was, because despite the fierce winter, and the spring that really never came, the sun came out to shine brightly on that beautiful June day.

    When I first visited the dispensary, preliminary medical cannabis card in shaking hand, I hadn’t considered that there would be so many options. This is so typical for me: I can’t see the forest for the trees. For so many years now, my focus has been on the addition of autism to the list of conditions treatable with medical cannabis, and the attainment of what we felt would be the key for our son, without understanding that there would be more decisions and adjustments to follow. There always are.

    The snow was melting, but the ground was yet frozen.

    During the past year, our son’s behaviors have become more manageable. We have still struggled, but there has been significantly less physical aggression and combative behavior, perhaps due to maturity, therapy, karma, or some combination therein. The little boys often tried to provoke him, to try to recreate the chaos that they knew so well. It was what they were used to. This, to me, was surprising and unsettling. He would react in harsh anger, fueling the reaction that the brothers sought.

    I worried about letting them out of earshot for too long on the farm property, doing what most little boys want and need to do: run free and explore. What if I was unable to intervene in time, if they fought too hard and I couldn’t get to them?

    He doesn’t like the taste of the edibles that I chose from the dispensary; I hadn’t expected that he would. He is, though, cooperating. That, in a sense, is our first victory. The strain that we got in pill form had a hyper-focusing effect, which led to arguing and, ultimately, aggression. Though this felt like something of a defeat, the nighttime strain had promoted peaceful, easy sleep. After a bit of experimenting with a hybrid strain, we have a self-declared calm boy who has had the best consecutive three days that I can remember.

    I wasn’t expecting the snow in mid October, especially since I was still thawing from last winter. In some ways, it just seems like one arduous, multi season continuation of challenges. It’s beautiful, some days. And there are breaks from the cold, breaks to fuel the next part of the journey.

    I wonder if Laura and Mary expected to move around so much during their times on the prairie. If they had known what was ahead, would they have put themselves into each moment, would they have noticed the layers of sunset and the secret bird nests? Perhaps that was what kept them going.

    The littlest boy, in particular, has been relentless the past few days, trying hard to make his brother angry by throwing toys, turning off his video game, or sneaking his food. This hasn’t worked as well with the new sense of calm. For this, we are so grateful.

    Already, the pumpkins and chrysanthemums are frozen hard into the window boxes, and I haven’t had the chance to cut back my hydrangeas. I may not get to them, but they are magical in their own way, standing resilient with wind-dried, straw-colored blooms.

    The winter will turn in rhythm. Tomorrow’s hard things will be different from those of today. We can’t go back. We may not want to, but remembering will make us know just how far we have come.

    I will be returning to the dispensary this week for more counsel (and hopefully a hybrid in pill form for our boy) but, clearly, we are closer.

    *********************************

    “These faces of dust and stone are, the dirt and bone of loss.”

    –Ben Howard, “London”

    ********************************

    I share these things not to highlight my family’s personal struggle, but in hope that others can relate to parts of the journey, and that we can reach out in kindness and peace to one another. Please share with others, if you are so inclined.

    XO

    Snow on the Corn and Other Things that Just Don’t Seem Right

    I guess you only get so many chances, at least in this life. Nancy, my favorite chicken, went quietly in the early morning cold of All Soul’s Day. She had never really been the same since she had survived the raccoon attack last winter, though she tried her best to keep up with the others in the flock. I could tell she was slowing down. She mostly hung out under the roost in Coop #2, which seemed to be the place for ailing chickens, chickens at low places in the pecking order, roosters that had fallen from favor, and other chicken outcasts. It was also the place where I would discretely drop mealworms and sunflower seeds to let these beings know that though I could not do much for their situations, still they were loved and cared for.

    Tonight marked the beginning of a journey which also stamped the end of another. I made it to the dispensary to get our first round of medical cannabis for our son. He had a small piece of chocolate tonight. He didn’t really like the taste, but soon he was tucked in his bed, sound asleep. It is too early to tell if this long, hard path has been worth it, but we are finally on our way. There is a sadness recognizable in this culmination of emotion, perhaps because hope…hope can be hard. Hope, even, can be uncertain.

    There are some things I’m not going to understand, no matter how long my place on this earth.

    In our foster parenting classes we discussed the concept of expected loss versus unexpected loss. Aunt Marion lived a long life by anyone’s standards, so her passing, at age 100-ish, was not surprising. Still, though, the news was as unwelcome as all of the “what-ifs” that made their way into my head. Her brother, my Grandpa Gene, has been dead for nearly three decades. Dan and I had made the trip to St. Louis with our young family nearly every year, to visit Grandma Evie, so that I could spend time with one of my dearest people, and so the children might know their great grandmother. The trips usually included a visit to Aunt Marion, who did not live far from Grandma, and who desperately loved birds. She was an independent, positive-spirited lady who was a vegetarian and who wore her hair longer than any of the older women that I knew. Though we likely wore her out with our visits, she never bid us an early farewell, and her incessant smiles are marked in my memory. I know that I have taken more from her than I was able to give.

    Grandma Evie died near the beginning of our fostering journey, during which road trips were only successful if they were about ten minutes long and involved me folding myself into the third seat to break up fights and to award quiet moments with some sort of candy. We had meant to go for another visit. We had meant to do many things. We just didn’t. We couldn’t. There were cards and letters, but we never made it back to St. Louis.

    Aunt Marion died, but also, she lived.

    I couldn’t explain the depth of emotion I felt as I gave my child the small piece of chocolate which was to assure his rest, to still his mind and carry him to his winter’s nap on this fall evening where the temperature rivaled the most fierce of any January cold.

    There is still so much work to do in the garden. Mounds of golden mulch stand frozen from the days of rain followed by an early deep freeze. The garden gate, still propped open with a log to allow access to the chickens for their harvest time foraging, exposes mother nature’s angry deed. My hard-working cart, full of leaves, wilted weeds, and tired jack-O-lanterns, stands frozen amid the empty raised beds and blueberry bushes which still await their blankets of compost and pine needles. Perhaps there will be more days. Perhaps there will be more time. Perhaps I will have to close the garden shed for the winter and catch up with myself in the spring.

    There wasn’t enough time. How did I know when I packed those pumpkins into the cart, that this would be my last day in the garden? How do we know that what we have fought for for more than four years is going to make a difference?

    Maybe it’s best not to know we are out of time, until we actually are.

    Rest In Peace, sweet Nancy.

    Rest In Peace, dear Aunt Marion. I believe I have you to thank, at least in part, for my love of birds.

    Where We Are: My Medical Cannabis for Autism Update

    “I had a great time. Can’t wait until next week.”

    Well, that was a relief, because the faces he made during the hour-and-fifteen-minute basketball clinic had me believing otherwise.

    We have come a long way, but we have so far yet to go. Four years ago on this day, I stepped out of character and shared testimony to a room full of people at the Holiday Inn in Countryside. I described, in two-and-a-half minutes, what it had been like to parent my son, and the frustrations and challenges that had led me to this place, on this day, pleading to have autism added to the list of conditions that could be legally treated with medical cannabis.

    On this day, four years ago, autism was recommended but ultimately rejected by Illinois’ medical director. What followed was much campaigning seemingly to no avail, and a series of legal appeals that led nowhere but to disappointment.

    Meanwhile, we struggled in the trenches through a few more hospitalizations, many medication changes, trials of alternative treatments, more physical holds, broken windows, damaged property, and defeated spirits.

    We love our son. Thoughts of the future were overwhelming, as he continued to grow bigger and stronger, and the effects on everyone else were glaring.

    Our psychiatrist recommended in-home applied behavior analysis (ABA) therapy; eighteen months later, the services began, with a provider working in our home six days a week. Our son continued to attend the therapeutic school where he had gone since the second month of kindergarten.

    It seemed that he would struggle each spring and fall, but we would manage to come out on the other side. Very slowly, we had seen some of the aggression subside. And then, a transition of one of the workers would set the shaky ship off course yet again.

    We have had some successful times, and some good family times, even in the community. We have also had to drag ourselves through the dark waters of fear just as we thought the light was coming.

    Time marched on. Late this summer, as my mind had been full of many, many things, I received surprise word from an attorney’s office and also the patient advocate (connected to us by our older son) who had sat by my side in that auditorium four years ago on this day. There had been no fireworks, no great celebratory feasts of which I was made aware, but autism had indeed been approved as a condition treatable with medical cannabis. This seemed to be the culmination of a fight that I had all but walked away from, only to have it circle back, it seems, in God’s timing.

    The angst has begun to rise once again. It seems the boys take cues from one another, modeling negative behaviors and forgetting to be kind. We seem to forget where we were. We need something, and maybe this is finally it.

    I was excited to contact our psychiatrist, a doctor who had been supportive of our journey to try to help our boy with medical cannabis, and who we first traveled many miles to see, and who we now see by virtual office as she has since moved across the country.

    We were all set, it seemed…until the need arose for standardized testing which resulted in an autism spectrum diagnosis. I have a cabinet of paperwork on this child, and many files hold hospital reports, office notes, and clinical diagnoses of, among many other things, pervasive developmental disorder and autism spectrum disorder. The elusive standardized test, though, was nowhere in that cabinet, because it had never been done.

    Lots of bad thoughts ran around in my head. What if, when we were this close, we were actually in a place where it never could be? What if, after all of this, his autism diagnosis could not be “officially” confirmed? Did it matter?

    We have been hoping and rallying for about five years now. We owed him the chance. Our kind lead behavior analyst recommended a psychologist that could do the requested test. We waited about two weeks, made the trip for the testing, and waited three arduous weeks more.

    The report came, and I wondered what I had wondered about, when, of course, we had known all along.

    It was good to see our doctor’s response when I forwarded the report: “Received, thank you…I will move forward with the application…”

    So we wait, once again. And again, we will wait when the application has been submitted to the state. But like everything else, it’s going to be okay. In this very moment, we are okay.

    We are back at basketball clinic again, and our boy is smiling and joking around with the other participants. He misses a free throw, and still he smiles.

    It has, though, been a rough week at home, for not just this boy. My body is sore from a few too many physical holds of writhing boys. I am glad the sun came back out today, as that always beckons a sense of hope from the darkness.

    I am hoping that the time, this time, finally, is near.

    *Many thanks to EVERYONE who has helped and supported us as we have desperately tried to make our way!