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.

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

–Ben Howard, “London”

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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.

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!

Eight Days

“Is my suit ready for tomorrow?”

There was a sense of urgency tainted with a little hesitation that accompanied my son’s question.

It was late. I wasn’t planning to do any more laundry.

He had been thinking this through in his head, rehearsing how the mornings would unfold, likely since the day he learned of this camp.

“You’ll be at the camp all week, so you can wear something else for tomorrow, and I will have that one ready for Tuesday.” There was no lack of guilt in this offering, but I had just emptied his sister’s basket into the washer, and I was weary from the day.

“Okay”, he responded. That was it. No yelling, no throwing things, nothing said about how I was ruining his life. I wondered what he was really thinking.

He has come so far. We have come so far. Just once this past month have I had to restrain him physically. The ten-or-more hold days of the not too distant past now seem unfathomable.

How is it that we have made it to today? Here I sit, outside the high school gym where my eleven-year-old son is just one of the fifteen or so boys participating in a shooting drill at the summer basketball camp. No one looking in would have any idea that less than two years ago, we were not sure we would be able to keep him safely at home any longer.

I have not been quiet in my support of legalization of medical cannabis for autism. After some fierce efforts, things have been quiet for a time. Now, though, the word is that people with autism will indeed be able to legally use medical cannabis as a treatment option. For this, and for so many other things, I am grateful.

A creative, intuitive doctor and a team of in-home therapists have been instrumental in helping our son. He has become better equipped to deal with the small things that to him have been very big things.

There are cheers coming from the gym. The atmosphere is positive, and my son and his brother are very much part of this. When Ethan first asked about doing the camp, I wondered if it might be time. I wondered if it might be time to try something to feed his current passion, something which rather than setting him apart from his peers might actually make him feel like one of them. The high school staff has reached out to me tell me how happy they were to have our son at the camp, and to ask how they could help make him feel more comfortable. That, to me, is our first victory.

He loves basketball. He has been staying up late to watch the NBA finals and his Golden State heroes. Little does he know he is fast becoming one of mine.

This is only the first of eight days here at the high school. For today, though, my son has been part of the group, a member of the team.

I still had some kitchen chores to do last night before I went to bed, so I decided it wouldn’t take that much longer to run one more load of laundry, including Ethan’s favorite t-shirt and the leggings that he likes to wear under his shorts. I could do that for him, for his first day of camp, if that’s what he needed to feel okay. I did, and I just may do it again tonight, so his favorite outfit, and he, will be ready for tomorrow.

Open My Eyes; Take Me To My People

It sure is cold outside.

She was as sweet a baby as ever I have known, and I was so happy that she was mine.

But actually, she wasn’t mine.

The first time I took her to the social services office to visit with her mom, I had dressed her in my daughter’s outfit, the one that had been my favorite from her early childhood. It was the softest pink cotton, a one-piece jumpsuit with rolled ankle cuffs. I have memories of my little girl wearing this in her first days home from Korea, when she was just the same age as my foster daughter. They both wore the leather little bird shoes, too, that I had saved all these years.

“They’re ugly.”

I looked up, perplexed.

“Those shoes. They’re ugly.”

The seasoned caseworker must have felt my heart sink . “I think they’re cute.” Her voice trailed away, but I know she knew.

I had entered the office, confident in my abilities of parenting another person’s child, but having no concept of the depth of feeling and emotion that each interaction could present. I left the office with someone else’s baby, and the first-hand experience that this journey was not going to be just about a little girl and her foster family. The picture was much bigger, much more important than that. The foster family, I would find out, would take a seat in the second row. This was about supporting families…this mom and this baby…not about a walk through my own pleasant memories as I dressed someone else’s little girl in my daughter’s jumpsuit.

Have I been blind? Have I been lost inside myself, in my own mind?”

–Natalie Merchant, “Carnival”

She had come with several bags full of clothing, some still with tags and others worn. For the next visit, and each visit thereafter, I chose an outfit from those bags.

It wasn’t really about clothes, though, for either of us. I was given the task of taking care of someone else’s child, and it was my job to do just that, and to never forget that she had someone that loved her first and best, and that I was a mere bridge of support between the two, for this moment in time.

It wasn’t long before this sweet baby was moved to the home of a relative. Family connections are so very important for children in care.

She had outgrown all of the clothing that had come along with her. The day she left, she was dressed in a brand new jogging suit that I had bought for her; the caseworker said her mama was going to love it.

She left in a driving snowstorm. My son, ten at the time, dissolved into a heap of tears on the floor of the bedroom where this little girl had slept for four months. He loved her deeply, as we all did. She was someone else’s child, and we were a stepping stone on her path. I knew this wasn’t going to be easy, but I didn’t think it would be so hard.

These days we have a therapist here for one of the boys six days a week. We are grateful for the support, which has been long in coming. The outbursts, the holes in the walls, and the fear still abound, but now we have someone to share the burden, to stand by our sides, at least for the two-and-a-half hours while he is here. Most importantly, we have someone who sees the magnitude of the behaviors and its effect on the whole family; someone who acknowledges that we are, through it all, trying our best.

I was trying my best to be a good foster mom. My eyes are open, and I see that I am merely standing by, reminding myself of what is most important…because I know, until I don’t.

There is an online support group for chicken keepers. I am so worried about my precious flock in these arctic temperatures. “They’ll be fine” was the overwhelming response when I shared my fears with these people that I have never met. My wise friend, not a chicken keeper, but a keeper of much else, suggested some extra straw. I took her advice and added a bed of straw to the coops, right on top of the pine shavings. And I hoped.

I sometimes wonder if the therapists that work with our son believe that there is hope for him to learn other ways to express his emotions. I wonder, but I am afraid to ask. There is promise in the unknown. For me, too, there is fear. And for this boy, fear. For the young mother who watches another woman care for her daughter, there is an uncomfortable fear for what is or what is not to come.

Keep me safe, lie with me, stay beside me, don’t go.”

–Natalie Merchant, “Motherland”

I may be okay to lay here with my eyes closed, hoping tomorrow takes its sweet time in coming. I’m afraid to open the door to the chicken coop. Afraid to face another long day with no programming, I am secretly hoping that the challenging behaviors might take a snow day.

I found out some years later that my first little foster baby has thrived with her family. We had been a tiny part of this story, a part of our collective purpose.

About a month ago, I had an exchange with a fellow foster parent. She offered words that have carried me through more than just that day. She assured me that there would be healing, on this or that side of heaven. What she said has offered new hope and fuel along this often tiresome journey, where I have learned to rely on the support of others, of my people in faraway corners, of my tribe, in so many ways.

My lungs burned as I breathed in the twenty-degrees-below zero afternoon air from the quick trip to the coop to check on the chickens, but my hand was warm in my pocket from the egg laid by a hardy hen. I can do this, for another day, forever, as long as I am in good company.

XO🐥❤️

Ode to My Child’s Teacher

You have been my child’s teacher, and I am grateful.

For a span of nearly twenty-five years, children of mine have had the privilege of being taught, nurtured, cared for, and loved by so many extraordinary teachers, men and women who have helped to form these young beings into who they are.

My nearly grown son stopped by the farm earlier this week. He was about to leave on a business trip, but he made time to deliver a bag of apple cider donuts from the nearby orchard. I had been harvesting watermelons when his car pulled in; I have a bit of time now to work on the chores that have piled up for too long, as the littlest boy is now at school for a few hours each morning.

My son drove off just before the bus returned my preschooler to me. Time has a way of turning our boys to men even as we spin around to tend to the things that fill our days.

In the early years of motherhood, we hold our little ones close. To them, we are the whole world. The doors open, though, and there are influences that reach past our own fingertips, influences that help to form these tiny souls into who they will become.

And that’s where the teachers come in.

I am busy with the things of adulthood; I have waved to my child as she looked back at me through the school bus window, and I hope I held a thought of gratitude for the teacher who was moments from receiving my teenage bundle of attitude, unrest, and great promise (who just happened to be wearing pajamas).

Because you have always worked to forge a partnership with us, and to find something good in difficult circumstances, even when actions and behaviors were beyond understanding; for your tenacity, I am grateful.

Perhaps the nature of my family makes for a good longitudinal study of some sort. At the very least, it has allowed me to see over and again how the great love of a teacher can make a vast difference in the life of a child.

You made me feel like I am a good enough parent, through my tears and frustration, when life’s forces were bigger than me; for your support, and for your kindness, I am grateful.

For seeing past my child’s dirty fingernails, for praising him for his careful coloring, and for asking him to tell you more about his special train engine; you have done these things, and you have made a difference.

For helping my little boy to see that he is magic and brilliant even as he struggles with below-grade-level work; for your compassion, I am grateful.

For giving my daughter the time and space that she so desperately needed to be ready for learning, and for lifting her up so the burdens she carried were just a bit lighter; for your understanding, I am grateful.

I sometimes wondered how we would ever make it through the day. Then I turned around, and a whole year had passed. The year turned to decades, and I see grown children whose lives reflect the gifts they have been given by their teachers through the years.

I love those cider donuts, especially at this time of year. I ate three in a row that morning, right from the bag.

Perhaps it’s the time of year: transition, gratitude, thanksgiving as all around me are fields in the throes of harvest. I am grateful for the little things, which really might be big things. I am grateful for my children, for what is before me, and for you, the teachers that have given so much of yourselves for so very long.

I am grateful beyond any words I could write, and I hope you know that as you offer your hand, once again, to my child.

Thank you.