Monthly Archives: January 2017

Times and seasons

*This is the talk I gave at church today. Because I post these things, as one does (when one is me).*

 

I’m going to talk about mortality. And winter.

Jeff has been reminding me, daily, that when it comes to winter, he is over it. Probably because he is the scraper of the walks before the bus shows up in the morning to collect our boys. The snow, the cold, the grey dreariness. He’s over it.

We have a son whose main hobby is going for rides in the car. If he had an Instagram account, his profile would say “What up. I have chauffeurs.” We do a lot of driving around simply for the sake of keeping Jack happy.

All of this winter driving has me pondering seasons. Why do we have winter? Why do we have really long seasons of cold. Why does it get dark at 5:00 pm? Why can’t it be May or October all the time?

Also, why does life have to be hard?

Winter happens when our part of the earth tilts away from sun, the source of warmth and light. But that’s just the literal definition of winter. I’m thinking of winter as a symbol for emotional, physical, and spiritual struggle.

Ecclesiastes 3 discusses the concept of seasons of plenty and seasons of want.

“To everything there is a season, and a time to every purpose under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to get, and a time to lose; a time to keep, and a time to cast away; a time to rend, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time of war, and a time of peace.”

I literally cannot read this passage without singing in my head, “Turn, Turn, Turn” by The Byrds. Tangentially, I feel that if more pop songs used passages of scripture as lyrics, the rising generations would better versed (ba-dum-ching!) in the Bible.

But, back to the King James’ Version. Not all of these times or seasons are positive and happy. We learn from this passage that there is a time to kill. There is a time to hate. There is a time to lose, to rend, to tear down. There is a time of war. These aren’t the only seasons, but they have their turn.

Why would God design the world to be sometimes full of laughter, embracing, and dancing, but oftentimes full of weeping, mourning, and hate? How is there a purpose under heaven for suffering? The scriptures basically ask this very question, in verse 9 of Ecclesiastes 3. “What profit hath he that worketh in that wherein he laboureth?” What good do we see from our struggles?

It continues, with this explanation. “I have seen the travail, which God hath given to the sons of men to be exercised in it.”

According to this verse, the earth is our gymnasium, so to speak, and we are here to be exercised in it—to sweat and struggle. I am not personally in love with exercise. Sometimes I wonder if In heaven, I didn’t get in the Enjoys Exercise line because I got distracted by the Enjoys Books line.

Recently I’ve been doing physical therapy for an issue with my back and hip. I assume this is one of those celebratory milestones of approaching a certain landmark birthday this year. It’s an early birthday gift, really, throwing out your back. The physical therapist and I have these conversations when I’m learning the exercises and stretches to target my core muscles. As a bit of backstory, my core muscles liquefied some years ago. I blame my children, not that I’m bitter. But the truth is, a weak core can lead to pain like I’ve been having.

So the physical therapist will tell me to, say, do a side plank. I’ll tell him that planking is hard, and I don’t have any core muscles. He assures me that I do have core muscles. They just aren’t as strong now as they will be after I exercise them more. So twice a day, like clockwork,  I do these exercises. And it’s hard. Because of the liquefied core. And as soon as I master something, they ratchet it up to a higher level. This is how muscles go from weak to strong—with regular, repeated resistance. And it really works. My core muscles promise you that it works.

Muscles grow stronger with resistance, and so do our spirits.

We are eternal beings who have been placed on earth to travail, or toil. The scriptures tell us that this is intentional, to provide us the resistance we need so we can progress.

Continuing in Ecclesiastes, we read that God “hath made every thing beautiful in his time.” This tells me that what doesn’t feel glorious or beautiful now, will feel that way eventually. In his time. It’s a hopeful promise. But first, we have to grow by passing through it and learning from it.

The Savior’s atonement is a demonstration of this concept. First, Jesus was denied by his own disciples. He was tried and condemned. He suffered scourging and humiliation. He was hung by his hands and feet from a cross to die. If there is a time to every purpose under heaven, then this was a time of mourning, rending, weeping, and silence.

Jesus was perfect and sinless. He didn’t have to suffer and die, and yet there was a reason for his voluntary sacrifice. It was purposeful. He did it because He loves us and wants to save us from mortality so we can return to wholeness with our Heavenly Parents.

As He consistently is, Jesus is an example to us, including through His Crucifixion and resurrection. Through the Atonement, He helps us to see how we can weather our own inevitable seasons of hardship. Jesus didn’t want to pass through sorrow. He pled with his Father, saying in Matthew 26, “O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt.”

He didn’t ask to suffer, but when it was the Father’s will, He did it anyway.

Jeffrey R. Holland’s seminal talk on mental illness titled, “Like a Broken Vessel,” touched on this idea of looking to Jesus’ suffering as a model for how to face our own times of depression and anguish. “Believe in miracles,” Elder Holland said. “I have seen so many of them come when every other indication would say that hope was lost. Hope is never lost. If those miracles do not come soon or fully or seemingly at all, remember the Savior’s own anguished example: if the bitter cup does not pass, drink it and be strong, trusting in happier days ahead.”

When Jesus appeared to Mary Magdalene in the garden on Easter morning, she was astonished and exultant. In just two days time His disciples and followers had experienced the deepest sorrow and devastation, and then, paradoxically, unspeakable joy. If He hadn’t suffered and died, there would have been no Atonement and no gift of everlasting hope. It was only after the trial and the suffering that redemption and forgiveness for humanity were possible.

The seasons of my life have shown me that this is the pattern of life. Our Heavenly Father has designed a world wherein we face resistance so we can grow. I have faced some dark times with my children. Sometimes they go on for long periods, but they have always eventually lifted, easing the burden for a time. Just in the last month, we were again facing more and more violent and aggressive behaviors again from Jack. These behaviors are a daily part of our life during all seasons, but this winter they were once again increasing. Jack was smashing things in our house, and punching people when he was frustrated, which really takes a toll on the people living with him.

This went on for some time, with medication and behavior therapy helping but not relieving the issue. So a couple of weeks ago, we called Ray. Our home teacher. He is in the middle of his own season of difficulty being a caregiver to some family members who need a great deal of support. But, he came. He showed up willingly and helped Jeff give Jack a healing blessing. What were we hoping to heal? Autism, developmental delay, Macrocephaly-Capillary Malformation Syndrome? Violence, aggression, destruction? Yeah, sure. Any and all of the above. Just healing.

Jack, who is the size of a small horse, sat on my lap during the blessing so I could try to keep him from getting up and prancing around the room. He did sit, with a fair amount of wiggling. He was pleased with the blessing and laughed when it was over. The next day, Jack wasn’t aggressive. He got mad a few times, but never actually hit anyone or broke anything. The rest of the week, he was calmer and happier than we had seen him in quite awhile. We still have regular episodes of anger, but not to the degree we saw earlier this month.

I do think the improvement was because of the blessing. I don’t think it will last forever. But I’m heartened to know that when we pled with God for a measure of healing in this season of bleakness, He said, “Okay.”

To be like Jesus, we can submit to the disasters that shake us, and the storms that wail through our lives. We can do what He did, by accepting the challenges that God asks us to face. We can see them not as mistakes or unfair wrongs that are standing between us and the less-painful life we likely imagined for ourselves.

We can see hardship as mortality exercising us to make us humbler and stronger. We can see challenging times as divinely-appointed seasons with the gentle purpose of leading us closer to our Heavenly Parents.

There have been slivers of time in my life where I have been able to access a sense of perfect rightness about the way my life is unfolding. Not perfection in the daily trauma, but a sense that everything I experience is playing out the way God knew I needed it to, in order for me to successfully change. I don’t always see my hardships with this kind of clarity, but sometimes I can.

Occasionally, people will ask me why we had more children after Jack was diagnosed with his profound disabilities. Honestly, it’s not my favorite question. If you do find yourself asking me this, please know that I will give you side-eye. Then I may stare at you until the silence grows awkward. But because I am an extremely forgiving person, I will answer you.

I have responded to this question before by saying that we didn’t know if our younger children would have disabilities, but we had them on faith because we felt strongly prompted to bring them into our family.

But. I think I have an even better response now.

I had an epiphany recently where I fully understood that I needed my two youngest boys and their difficult entry into our family to level my pride. And leveled it was, my friends.

Parenting Jack as a young child was hard, but in those days, I was still trying to do it by myself. I thought I was handling things pretty well.

It took a much bigger wave to roll me.  I needed to have the wind knocked right out of me. I needed life to pin me to the ground before I could really listen.

I wasn’t ready to rely on Jesus for healing and strength until I had four children, and three of them had special needs.

It wasn’t until I couldn’t do it alone that I truly understood that I needed my Savior. I needed all of it—the deeply painful experiences that God has given me so I could see Him in my life and I could reach out to grasp my Savior’s hand.

To everything there is a season and a purpose. When we experience seasons of sadness or struggle or gloom, it doesn’t mean we are failing.

We need the strenuous seasons of mortality to teach us and refine us, which was God’s purpose in sending us here. It’s why we chose this life.

Orson F. Whitney famously said, “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God … and it is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire and which will make us more like our Father and Mother in heaven.”

We chose mortality, because it would be hard. We knew the trials would transform us.

A Measure of Healing

Jack has gone from deeply-irritable/house-trashing/angsty-angry to content and exceptionally happy. Just like that, he is so much better.

Last Sunday, in desperation, we asked our home teacher, Ray, to help Jeff give him a healing blessing. Healing for what, you might ask? Well we didn’t really know. Healing from anger and violence and destruction. Healing from autism and developmental delay and Macrocephaly–Capillary Malformation. I don’t know. Just healing.

We had been in such a state of horror for so many consecutive days. We had no other options, other than driving him to the neuro-psychiatric institute again (no thanks). So I held Jack, the size of a small pony, on my lap and they administered the blessing. Despite my hugs and squeezes, he squirmed and tried to get away, but only for show. If he really wanted to get away, I couldn’t have stopped him.

The next day, Jack was well-behaved, for the most part. The rest of the week, Jack was happy. When he wasn’t happy, he wasn’t entirely angry. He lunged at people a few times, but never actually whacked them. The shredding of the house mostly stopped. He was more willing to help when we asked him to do his chores. He laughed and chirped a fair amount, too.

Was it the blessing? I think it was. Will he stay this way? I don’t think so. But when we asked for some measure of healing, God said, “okay.” This makes me hopeful for future bailouts from our darkest hours.

In other news, I have been less bothered, of late, by January and by the utilitarian (purely functional/not pretty) aspects of much of our house. I attribute this to the new, long-term vision I have for my life. I feel that I am looking at things differently. I’m beginning to appreciate the speed at which things move and the cyclical nature of life. Sometimes it’s good. Sometimes it’s repetitive. Sometimes it’s just awful. It keeps changing, which is better than moldering and stagnating.

There’s always something new.

 

 

Tiny Letters, Tiny Dancer

Dear Cassie,

Thank you for teaching Jack to put a clean sheet and blanket on his bed every day. It’s a small job, but I love that it isn’t mine anymore.

 

Dear my country,

Let’s try to love each other a little more, mkay?

 

Dear everyone everywhere,

Special needs parents can feel isolated and not understood. I am currently in that place. Please tread lightly, or I might give you a stern lecture which you neither warranted nor welcomed, xoxo.

 

Dear Hannah,

You are the queen of the ABA. Thank you for teaching my boys flexibility, and for being a calm presence in my house five days a week.

 

Dear social media,

I’m happier when I see less of you. No offense.

 

Dear medieval England,

Why wasn’t I born when you were happening. I mean, I’m straight up glad I wasn’t, and yet…

 

Dear croissants,

You make January buttery. Which is better.

 

Dear Jack,

You have been so happy and calm for the past five days. Let’s keep doing this.

 

Dear Ray,

Thanks for helping Jeff give Jack a blessing six days ago. It appears to have worked.

 

Dear my physical therapist,

You deserve a prize for helping my core change from goo to muscle, and my hip and low back from clenched fists into moderately stretchy things.

 

Dear writing group,

I promise not to unfairly malign any of you. Thing night is our thang.

 

Dear Del Taco,

Do you literally mean “of the taco?” Or is it more like “Taco’s?” Also, thank you for having Cherry Coke on tap. Cheers.

 

Dear bedtime,

You deserve a crown, my friend. You just keep killing it as best part of the day, consistently. Hands down. I love you.

 

 

Don’t forget to sing

We’ve had a let’s-just-hold-on-and-try-to-survive kind of a week.

It’s been physically painful with lots of restraining of a raging twelve-year-old, and emotionally grueling in a way that’s difficult to describe. I couldn’t get out of bed the other day. I just couldn’t do it. I literally called and cancelled a doctor’s appointment because I could not make my brain propel my body out of bed. When they asked why, I wanted to say, “because my mentally-disabled son is beating up me and the rest of the family every day and breaking the house and we are desperate for solutions and I’m so sad that I can’t get dressed and drive to your office and pretend things are okay.”

This is what I really said, “I have an issue with my children and can’t make it.”

So there was that. But there were some good, really good things, too.

The high points:

  1. Jack’s IEP. IEP Day is to the special needs parent what bone marrow transplant day is to the leukemia patient, I suppose. It’s big and emotional. It has a reputation for being confrontational, spawning memes like this one:

But Jack’s IEP was positive and productive. His team is terrific. His teacher was hand-picked by heaven to influence Jack and his classmates for good. He has come a long way in many areas, and for these things, I am grateful.

2. We had a big meeting with two behaviorists, our ABA therapist, and Jack’s respite sitter to collectively determine how to proceed in this new realm of violence and destruction. Jack has entered a new phase of growth and boundary-pushing behaviors. The same things we’ve always done at home to help Jack aren’t working anymore. So we huddled and shared ideas and I felt that Jeff and I weren’t alone in this painful trek. The new behaviorist actually had a promising lead on a foundation that provides some of the support services Jack needs. When the meeting ended, I felt like God tapped me on the shoulder and said, “See. I told you I would be here and here I am.”

3. Jeff and I got to leave the house for a few hours on Saturday afternoon to eat lunch and run errands. It felt like the boulder rolled off my shoulders. As we drove home afterward, Jeff said, “This is what normal people do on Saturdays. They go out. They eat food. They buy a shirt. They buy a dress.”

I said, “We aren’t normal people. But we did get to go out and eat and shop. So, huzzah.” We nodded knowingly at each other.

As we were taking Jack on one of several thousand drives this weekend, a voice in my head said, “Jesus took all of this on himself. He knows how you feel when your little boys are afraid of Jack. He knows how Jeff feels when he has to pin Jack to the floor to stop him from biting and punching us. He knows how Jack feels because his brain doesn’t function normally and he can’t speak and he’s frustrated.”

And then I read this scripture and it sang to me. “Fear not, little children, for you are mine, and I have overcome the world.”

Don’t be afraid.

Don’t be sad.

Don’t worry.

Get up and take a deep breath.

Put on your shoes.

Get in the car.

Keep going.

Remember Jesus.

Sing.

The Low Place

I wrote that snowy Saturday post that was all hearth fires and loveliness, and I haven’t been able to write a thing since, despite starting several posts.

It’s been hard.

Jack is not sick. He’s healthy and robust. But he’s time consuming and destructive. He sleeps less than ever before, possibly because he’s twelve and a half years old. He is aggressive when he doesn’t instantly get his way.

This is not a phase. It is not an ear infection. It’s the fruition of the crystal clear prompting I had on the day Jack almost killed me and two of his brothers in the car in the middle of that intersection, when the Holy Ghost spoke to my mind and said, “It isn’t going to get easier with Jack.”

It just isn’t. At least we know this. I appreciate the honesty.

I have watched his behaviors escalate. I communicate constantly with his team at school, with his pediatrician, with the psychiatrist, with the behaviorist. Jeff and I are constantly trouble-shooting. What more should we be doing? What do we need to change? How can we keep the rest of the family afloat as we handle all of Jack’s pressing needs?

And I have just felt like crap on a stick. What is the point? It isn’t going to get easier. It is going to get harder. And it’s already pretty hard.

All of this makes my head hurt. It’s a boulder sitting square on my shoulders and neck. It also feels like some fat, furry marsupial is sitting on my head and wrapping it’s big gross tail around my face.

I don’t like writing when things are like this. It feels like complaining, when it’s actually just the truth, unvarnished.

I could talk about all the things that I would like to be different. I could talk about all the things that we can’t do because all our energy is focused on surviving. I could make a big list of broken household things. I could outline all the ways Jack has been literally beating up his family members.

But I don’t want to. I’m weary and I’m in a low place. My faith is in a holding pattern. I’m not getting any major epiphanies. I feel that God is helping me function, despite the sadness, so that’s appreciated. I’m in the trough of the wave, though, and my experience tells me I could be here for some time.

 

Snowy Saturday

Jack is asleep beneath a quilt in the armchair and outside it is snowing.

Jeff and I saw La La Land this afternoon and I’m warm and happy and sad, all at the same time. I am one of those people who falls disreputably in love with a musical, no questions asked. Disreputably and desperately. Don’t even talk to me unless you want to rehash the opening song and the observatory scenes with Stone & Gosling. We either discuss at length or you get out.

Jeff’s take on Emma’s and Ryan’s performances (we’re on a first-name basis, see), “They both just smoldered.” They did smolder. Significantly.

Also, I unequivocally loved Moana, possibly even more than my little boys did, and keep singing “there’s a line where the sea meets the sky and it calls me” into perpetuity. Can’t stop won’t stop.

If nerding out over movies where people break into singing and tap dancing is wrong, then I don’t want to be right.

At this moment in time I am in my little corner of heaven, which is beside the fire, cigar chair beneath and behind me, laptop on my knees. I am such a simple creature. Just give me stories and songs and heat and comfort. It’s all I ask for. And something to type on. And soup. And dark chocolate. And boys being peaceful. And post-date euphoria.

It’s all I ask.

Which is a lot.

I know.

I ask for a lot. Because in order for a date to happen, we need reliable respite care. We need people who know and get Jack. In order for Jack to occasionally fall asleep on a weekend instead of raging and spazzing out, we need all the meds to be in perfect balance thanks to the psychiatrist we’ve known for years. For the other boys to be happy of a snowy Saturday, they need friends nearby, and snow gear on hand that fits every changing foot and body and head. And we have it—all of it, huzzah!

Me at peace on a weekend is a 180 reversal of our weekend tradition since we entered the Autism Spectrum Parenting adventure theme park, nearly thirteen years ago . I can relish it as a reactionary opposite to years of Death by Special-Needs Saturdays.

It’s the concept of not fully appreciating a gift until you realize how precious the gift is, and how good.

I’m aware that just because this quiet Saturday is a thing of beauty, doesn’t mean that all future Saturdays will be.

Knowing this makes the date and the fire and the laptop and the boys playing in the snow and Jack napping that much sweeter.

 

 

 

 

 

 

Why, and for whom?

My children *might* have entered into a pact to relieve me of my grip on sanity.

The naughtiness and the sass-pants attitudes were rampant last night. It wasn’t just one of them acting out at a time. There was far too much overlap. I had to believe it was a conspiracy.

I may or may not have stormed around after a particularly rebellious and screamy bedtime routine, thundering to Jeff, “I spend my entire life caring for them and they are being such jerks. I want to punch them all in the face.”

This was after I spent fifteen minutes cleaning peppermint tea off my laptop, lamp, bedside table, wall, baseboards, rocking chair, outlet and charging cables, TV remote, and new (hilarious) Jennifer Weiner paperback. Because Jack doused them, intentionally. And then laughed—cackled!—when I told him I wasn’t amused.

If I had done even one self-centered thing yesterday, maybe I wouldn’t be quite so ready to bash their skulls together. As it was, the day had been one kid-serving errand after another.

“Parenting is essentially being someone’s slave. You are their slave labor and they don’t care about you, as long as you are working quietly in the background, doing everything to make their lives comfortable and possible.” That is a direct quote from me to Jeff. Maybe they will put it on the front of the printed program at my funeral service someday.

My friend Marianne sometimes uses the hashtag #iamaninspiration when she posts funny pics of her first world shoe dilemmas or forays into the domestic arts. It’s funny because her posts are of the anti-Instagram sort, meaning they aren’t carefully curated into flawlessness. This means that she really IS an inspiration, because she keeps it wildly real. Comedy is hard, but she effectively does it by letting the shizzy parts of life shine forth in their majesty. She owns them. That’s what makes her stuff funny. By nature, she is a dry wit. She’s the person you want sitting by you during something boring, offering up deadpan gems about her childhood imaginary friend, Ms. Karen Getty, or how her new twitter handle is going to be the name of that one variety of their backyard chickens: Silkie White Chick.

The tongue-in-cheek references to all the areas of her life which are flawed and funny and weird are essentially Marianne winking at the idea of what most of the internet does currently find inspiring.

In a very real sense, I felt plumb out of “inspirational.” I felt like the opposite of whatever an inspiring mother is.

I was a really irritable mother who wanted to throw snowballs at her kids’ faces to snap them out of their self-indulgent/demanding reveries. I wanted to bounce giant exercise balls off their heads and tell them to wake up and a) start appreciating their mother and b) stop wigging the heck out about everything.

But I had to model calm, so I wrote it out here instead. And then resolved to wake up early to make a giant, hot breakfast and prep five billion meds and read from 3 Nephi to Henry while he ate his lumberjack breakfast. And then wait for Jack to come downstairs, and remind Charlie 45 times to wake up and get moving. And I would await that moment the bus would leave with Jack and Charlie, and Truman would begin building with pipes, or lining up his stuffed animal pets.

Because that’s when the Coca-Cola pours out, delectably crisp over ice, and I can drink it before stretching my tightly coiled back, while listening to Alma and praying for strength.

It’s not the endless service that bothers me. I am doing what I want to do. This is the life that is right for me, in purpose and meaning. The problem is that so many times I am met with screams and sass and yet more demands.

So here are my existential questions for a day when people flipped out more than not: Who am I serving? Why am I trying? My children may only appreciate it in a theoretical way, like how we appreciate running water and functioning appliances only when they suddenly aren’t available.

The truest type of service is that which is given with no thought for reciprocity. Am I helping my sons because I want them to thank me?

Or am I doing it because I love God?

It’s a good question.

And then I woke up today, and it was a fresh start.

Everyone had had enough sleep, including me. We were not jerks to each other. We were nice.

The boys went to school. Truman played pipes. I wrote my syllabi and updated my class calendars. Truman went to preschool. I went to physical therapy for my back. Truman did therapy. I went to Henry’s basketball game. Jack’s helper came and helped. Jack was happy. Charlie did therapy. Charlie was happy. When we have helpers we are happy. Life is able to proceed fairly well when we are not tied up in constant battle with constant meltdowns. It hums pretty nicely along when we have a thousand people assisting us with all of the things.

I thought to myself as I watched Henry play, “I cannot believe I have a son who is capable of playing a competitive sport, and who is good enough to be on a school team. This is amazing. That is my kid out there.”

Then I thought, “And all my other boys are currently doing therapy with people who understand them and who are helping them learn things. What miracle is this?”

I didn’t want to punch anyone in the face anymore.

I wanted to hug God.

I wanted to tell him, “Thank you.”

And also, “I’m not doing it so my children will thank me. I’m doing it for you.”

A meandering post discussing Trash versus Fire

After a perfectly reasonable Christmas holiday and a “typical kid”-centric vacation to a warmer clime for a few days, the rest of the winter break has been utter trash.

“Trash” is how my fifteen-year-old describes anything that is annoying, disappointing, or ridiculous. It must be vocalized as though it is painful to even say the word. Trash.

The Utes offense in their bowl game was trash. Having to wake up before 10:30 am over Christmas break is trash. If there are no Oreos or vanilla ice cream in the house, you have pure trash.

I digress.

We returned from our family trip and things began to go poorly. Decidedly so. Jack’s left ear is again infected and his behavior is temperamental. By temperamental, I mean he has flushed a pair of sunglasses down the toilet, broken the light fixture at the bottom of the stairs, tried to re-break his bedroom window, smashed some dishes, and repeatedly thrown his Christmas presents around the garage until they died.

Jeff and I generally enter a fugue state of our own when Jack is sick. We are constantly living with heightened awareness bordering on agitation. We don’t get enough sleep because Jack doesn’t get enough sleep. Nothing happens around the house other than mediating Jack’s messes and managing the destructive behaviors.

We would like to engage in some projects to improve the parts of the house wrecked by Jack when he is sick. But all of our weekends/days off feature us focusing on Jack like a laser. He’s not just a full time job. He’s a full-time job for at least two people.

All of this may sound like me whining and complaining, but you guys, it’s just the actual truth of our lives. And I haven’t felt like writing about it. I haven’t had anything to say other than, “this is complete trash.”

Sometimes I hesitate to bring this sort of thing to light, because it’s not funny, nor inspirational. It’s just this nightmare scenario on repeat in our house that we can’t fix (on many different levels). Most people don’t know the ins and outs, the outs and ins, the what-have-yous of Jack’s ear infection/strep infection/cold & flu behavior. And when they do learn something about it, they’re usually quietly horrified.

Sometimes they will ask if we have considered institutionalizing Jack. I think they ask this because they see the depth of our struggle and wonder why we haven’t looked into other options. So while I don’t like it, I understand why they bring it up. I suspect they are picturing themselves living all the time in a house where violence happens regularly and entropy is the business at hand.

The reality is, it’s more complex than just dropping Jack off at a “home.” There are more factors at play than, “life would be easier if Jack lived somewhere else.”

A few of the sticking points: there really aren’t many residential treatment options for a person Jack’s age in our area, and those that do exist house children and teens with the very most aggressive and uncontrollable behaviors. The patients in these facilities interact together, meaning Jack could learn even more disagreeable things. The risk of abuse is high for a nonverbal person. Then there’s the part about not living among the people who love him the most in the world, but around staff members. And the people who manage his disability services don’t want to approve a residential facility because it costs far more than if Jack remains at home and receives other in-home services.

Not that I have to explain this to the world, but I will if it helps people understand that “finding a home for Jack” isn’t like finding a home for a dog that you can’t keep. It’s not the same thing at all. It’s complex. And he already has a home with the family that God gave him, which is the ideal setting. Until there is a better option or we can no longer care for him, he stays here.

I’m not sure how this post turned into a dissertation on Why Jack Still Lives With Us, but there it is.

Let’s talk about trash and its opposite.

Trash is that Jack gets more ear infections than anyone who ever lived on the earth, and that when he hurts, everything about our life turns into roller derby meets The Walking Dead.

Trash is that we can’t give Jack a Eustachian tube transplant.

Trash is that despite all the specialists and all the interventions and all our best efforts in every regard, the death spiral behaviors are here to stay. Much of the time, anyway.

But.

In teen speak, the opposite of trash is fire. Actually, fire! Things that are fire! are “sick” (which doesn’t mean ill or disturbed). Other synonyms are cool, excellent, on point, rad. You get the idea.

There are, thankfully, parts of bad weeks like this one that aren’t pure trash. They’re fire!

Like the fact that we have late church now, and Junior came to help out this morning, so Jeff and I got to take a Sunday morning walk in the frosted and flocked landscape of a freezing fog. It was iced loveliness.

Also, we sang “For the Beauty of the Earth” at church today.

And Jack was pretty good as we took turns staying home with him during the different hours of church meetings.

Jeff made a pot roast and mashed potatoes for dinner. This is the very definition of fire!

Then Jack passed out in the red armchair after eating a dozen warm homemade chocolate chip cookies.

It’s a new year. I’m sitting by the fireplace, writing. Jacky is momentarily peaceful. My children are all here. Jeff is with me through all of it.

Fire.