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.

Still Brave: A Birthday Tribute

It’s the eve of your twelfth birthday. The picture in my head may have been a bit different from what I was expecting, but I should have known a long time ago to stop expecting, because there just doesn’t seem to be much sense in that.

I wish you hadn’t told me that you were starting to get a mustache, but I wish harder that I hadn’t looked, because I am not ready to see. I am not ready to see lots of things, but here I stand, knowing that in another birthday or two, I may actually have to buy you a razor.

On the basketball court, I watch as you run with your peers and keep pace with the coach’s demands. You dribble the ball through your legs, and you have a pretty slick left-handed lay-up.

You have come a long way. I wonder if I expected that. What I didn’t expect was the fallout behaviors of the younger children that would manifest as your own chaos was starting to fade. It has been hard around here lately. I know that your sadness looks like anger, your frustration looks like anger, and your anger looks like anger, but that you feel so very deeply and wish only to be heard and understood. I think that’s really all any of us wants.

Four years ago, we had hoped that autism would be added as a condition treatable with medical cannabis. After so many frustrating and sometimes risky medication trials, we thought that this might bring some peace and hope for your future, for our future.

It was recommended but not added, but we kept hoping. Help has come in different forms: home therapists, one medication that seems to have made some difference, your own strength, tenacity, and bravery, and a little dog named Spotty.

Now, the time has finally come. Autism was added as a condition this August. After updated tests to confirm the autism diagnosis, recommendations from the professionals, and some phone calls, we will be meeting with a patient representative at a dispensary this week.

I still think it’s going to help you, and I still think it’s going to help all of us. I just hope we are not too far gone by now.

There was sparring among brothers today; not just a little bickering, but the type where intervention is required. We made it to the end of another day, though, just like we always do.

You tidied up around the house and set the table for dinner after the emotions settled, a sort of peace offering, perhaps, but a welcome one.

You’re growing up. You are doing well at your school. You still love looking at the sunsets with me. You are looking forward to having your friends visit tomorrow. Twelve years have been a lifetime and the blink of an eye. I hope you feel loved, and I hope I have been good enough.

Happy Birthday, my dear boy.

Darkness and Light

My mom sent a photo. It’s hard even to think of my parents as senior citizens, though I am nearly one myself. The image shows participants in a charity race on a bright day, and front and center are my dad and my mom, both reflecting the sun, smiling and looking well…astoundingly so. They are eighty.

I do worry about my aging parents, far away from me. For them, I hold the thought that theirs will be a long, fulfilling sunset to their lives, already well-lived. Their richest blessings are one another, and of that they are keenly aware.

My older children are forging paths into their own trees, mountains, and skies. Their fleeting journeys here with me have evolved to include other pursuits, and I am here, hoping that they know what they stand for, and how deeply they are loved.

Those still at home are my reasons to be here, too, right now, when the days, arduous as often they are, turn quickly to years.

Aaron is sick. From his earliest days, he was the one to get pneumonia when the others had a sniffle. Still, at nearly ten, he seems to be hit hardest by these seasonal bugs. A sore throat, fever, and chills (“shimmers”, as he calls them) kept him (and me) from the last game of his fall baseball season, where his team played for the championship. I can hear him now, breathing erratically and talking about dragons, as he has fallen into a restless sleep.

I worry that I will not be enough for all of these people to whom I have been entrusted as messenger. On the days where I fall short of keeping up, where even the thought of tearing down the mountain of legos or moving the discarded socks and sweatshirts to the laundry basket overwhelms me, it is then that I try to remind myself that it’s just a day, one day, and that I will have a chance again tomorrow.

I worry that we will die before we are done living, but I suppose that most people do.

It seemed a grand idea, to offer newborn chicks to my broody hen, in order to satisfy her mothering instincts and free her from months of occupying an empty nest. It shouldn’t matter that the nighttime temperatures were near freezing. Chicken Bernadette would keep her new babies safe and warm. We wouldn’t have to concern ourselves with the risk of having more roosters. These were rare breed female chicks, shipped to the local post office directly from my favorite hatchery.

Aaron had a break in his fever when the call came; within half an hour, we were in the coop, opening the box and introducing the babies to their new family. Maybe it was just a little reminiscent of the days when I would hurry to the DCFS office to be entrusted with a tiny someone, for whatever reason, for however long.

One of the babies did not look well. She was cold and barely responsive. We put her in the nest along with the other babies, and we hoped for the best through the darkness.

It was a wakeful night. When I opened the coop at sunrise, Bernadette was still perched proudly on the nest. Two hours later, three of the babies were dead.

Aaron’s fever would break and rise, more rhythmic than his breathing. Every chance I had, I checked the coop. The last little chick’s peep sounds reassured me that all was not lost; mother hen Bernadette was tending to her baby.

At dusk, when I went to close the doors and to see that all of the chickens were tucked in for the night, I came upon the baby chick, who lay motionless outside the coop entrance. Bernadette was roosting with some of the other birds. Did she leave her baby out in the cold to die? Did I?

There’s heartbreak in chicken keeping.

There’s heartbreak in parenting.

There’s heartbreak in living.

It’s okay. It’s okay, even when it’s not, because when it’s not, we are probably not thinking of it.

As parents, we try. Sometimes we aren’t enough. Sometimes we can’t be.

I don’t know if I will sleep any better tonight. Aaron is restless, and his fever seems relentless. He is so hot and so cold at the same time. Soon, though, it will be spring again, and he will lace his cleats before heading to the field. There will be new baby chicks at the farm: rare breeds, from the hatchery, but also, perhaps, a feisty young rooster that hatched from a broody hen, if that’s what was meant to be.

My big kids will have new plans.

My parents will see more sunrises and sunsets, together.

I will know that the day holds, maybe not the best or easiest lesson, but the right lesson, for me, for this day.

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!

Occupation

They’re a bit like my children, hummingbirds. We never know how long they will stay, or when they are going to come back. I have made a point to keep my eye on a hummingbird when it comes to the feeder outside the kitchen window; I have taught my children the same, those that will listen, anyway: to take in the fleeting magic until it is gone. It’s a lesson I am still trying to learn. The hummingbird’s time is short, and it is worth one’s complete reverence.

After making fresh nectar in the early summer, I hadn’t given it another thought until just a few days ago when I noticed one of the tiny birds hovering nearby but not stopping to feed. Again, I forgot to refresh the nectar. I have had a lot going on inside my head.

A few days later as I was sorting basil leaves for pesto, a hummingbird brighter green than my garden harvest stopped to take nectar from the neglected feeder. It came back two more times, each time for just a bit longer than before. I felt kind of sad for the bird, because the weeks-old sugar water could certainly not have been what it had hoped for.

Please come back, little bird. I will offer you the freshest nectar, as much as you care to drink.

My adult daughter came to the house as she often does, unannounced, with her boyfriend. I do not discourage this. There were days during the tumult of her high school years where I wondered if she would ever return once she closed the door behind her.

“Ooh! Are you making pesto? Could we come for dinner?” Her eyes had that little sparkle that I loved best.

Though it shouldn’t have, her question caught me by surprise, and I told her that I was leaving town to go to a visitation. Someone would be coming to watch the boys, Dan was taking one boy to baseball practice, and another’s therapist was here, so dinner guests might be hard this time.

“Oh, I think I am going to cook fish tonight.” She was still smiling, no evidence of disappointment detected on her face, even as she was denied the dinner invitation.

Sometime in the string of days that followed, I refilled that feeder with sugar and water and returned it to its spot outside the kitchen window. No one should need an invitation, not even a hummingbird.

On a recent morning which offered a hint of the impending change of season with its crisp breeze, I had a couple hours in the garden, which now seems more of a congested jumble of weeds than the painstakingly planned plot that it once was. It was gratifying and almost effortless to pull ridiculously tall weeds from the rain-soaked earth. The late spring and summer months had brought seemingly endless rainfall with time stolen on the dry in-between days for painting and barn projects, a much anticipated family wedding, summer camps, one child’s surgery, all the regular farm and work chores, and some transitions that were hardly celebratory; all snatched would-be gardening hours and contributed to the wild, unkempt result which now faced me.

My young son wants to be a Boy Scout. Actually, he has been campaigning for this since about first grade, and when the invitation from a friend to accompany him to a meeting came early one morning, he somehow ended up at the Elks Club that night, only to return with an application and yet another skip in his step.

We had a Boy Scout nearly two decades before. I remember a living room full of popcorn, hours spent whittling a wooden car, fingers sore from the lost art of sewing patches, and tents threatened by storms and imaginary bears. Looking back, things could have been much, much worse. The rhythm and expectations had offered a sense of purpose and helped to instill a drive in our older boy that he holds today. Perhaps this will be a good thing for a boundlessly energetic little brother who likely hopes the bears will not be imaginary.

The application was a triplicate form. I filled in the boxes with identifying information but hesitated on the line that asked for my “occupation”. I have been a few different things across the years, but in this moment, the “answer” to what belonged in those boxes eluded me. What was I, anyway?

I don’t want to cry because it’s over. Rather, I would like to celebrate that it happened, and that I was part of it. I would like to rejoice in how it changed me.

This time, the hummingbird stayed for a long while, flitting from one side of the feeder to the other as I held the smallest boy before me on the counter. We watched this moment of magic together, captive by what was clearly the orchestration of a higher power. As it finished feeding, the bird flew off. My little one returned to his toy tractors and I to my breakfast dishes with both of our souls a few drops richer.

There were no wooden pickets to contain my thoughts which rambled as the creeping charlie and the wild carrots inside my garden fence that morning.

Maybe there isn’t a word for my occupation. Maybe there is, though, and maybe it’s the same word that would describe how it feels in those captive seconds while we watch a hummingbird at the feeder.

Something showed itself under a particularly stubborn clump of thatch that had been growing alongside and trying its best to stifle my young blueberry bush. It was just a little plastic tag, an identification marker that had come with the plant when I had first planted it at the farm, when I had chosen it because it bore the name of my son, my faraway scholar, my one-time Scout, my first little boy, my inspiration for all of this…”Elliott” blueberry was stronger than thatch and here to bring me back to what this was all about.

It’s worth the magic. It’s worth the tiny moment in time.

Onward, Scout!

Afterthoughts: A Foster Family

It has been a few years now since my identity has fallen away. It was just a piece of paper, kept in a drawer most days, but it represented so much more than I would ever realize while it tied me to the words written in simple computer-generated letters. We had a family identification number, a maximum capacity, and regular licensing reviews and social worker visits. We no longer have any of those; our foster care license has long since expired. Now, though, we have much, much more.

We have the reality that comes with signing on to a somewhat mysterious, intriguing, wholly encompassing and challenging pursuit.

While the reasons that some have for fostering are different from those of others, our initial intentions from before we began echo much the same as they do nearly a decade-and-a-half later: we were not really sure where this journey would lead us.

We have opened our doors and our arms; we have fought, fallen, and pulled ourselves up; we have been broken by the very acts of trying to ease the pain. We have realized that with more experience comes more uncertainty, and with more advocacy comes greater anxiety and fear.

On the days when we have been so spent, so vulnerable, so completely usurped by the waves of emotion, we look forward to the quiet dark of night, and the comes a primal cry from someone who, unaware of the emotional states of others, needs what you didn’t know you had left to get her through yet another surge of hurt that has pulled her from her sleep.

It’s your own box of burdens, maybe things that you would never have otherwise recalled, that opens up to haunt you, that begs to be set free, as you desperately try to make sense of how it has come to this.

There’s a loneliness in the way that he hugged me. It made me believe that I, too, am lonely in a far-off, hollow, unidentifiable way.

Some call foster carers “angels” or “saints”. Some of my children have called me “the devil”. I am none of those. I am human, as are we all, just trying to make sense of the nonsensical.

We are all who we always have been.

Foster care means a new rhythm to your days: a rhythm that holds no rhythm at all. Sometimes it means allegations thrown at the easy target. It means investigations, questions, and our own questioning of the very motives that brought us to this day.

It means nearly forgetting who you are, or who you have been, in favor of becoming guarded, hardened, and weary. It means questioning yourself and wondering if even your own instincts are to be trusted in a place where blame and hyper vigilance abound. It means forever wondering if you have done the right thing.

It means looking for the smallest things, the tiniest triumphs, in a field of fury.

It means that once your license is gone, your life will not be as before. You are at once simpler and more complicated. Your family may have expanded, your limbs may be scratched or even broken, and you may no longer recognize yourself in the mirror. You may not look, too, for fear of what you might find.

You will, though, have forged relationships with people and places that have caused your soul to grow. You will have stood arm-in-arm with others and will have borne their pain along with yours.

You will lose your sense of purpose, only to realize that this was not up to you in the first place.

You will look, eyes wide, to the Maker, and cry out from your soul for putting you in this place, in this life, because though we are torn we are all of this earth, for this moment of time.

We’ll always be a foster family: all of us, collectively, through the connections that we have often fought to let go. There’s nothing separating us from the next person…not a piece of paper, not a harsh word, not a judgment.

What I have learned, I guess, is that we will never know.

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

The need for foster caregivers is always strong. Consider this if it may be part of your journey.