Excessively Worn Out

Tonight, I return to this not-funny blog to write things. It’s been an emotional weekend for a bunch of reasons, none of which I will discuss here. Some were happy/thankful emotions, and some were the opposite. It was spectrum-y, you could say (as my cousin Melissa DOES say). Tonight the not happy/not thankful emotions seem to be winning.

Jack’s ear is infected and he has strep. He may have had it for several days before we got it diagnosed and treated. This is a recurring issue—my stupidity in figuring out when my nonverbal child is sick. He can be sick for the better part of a week because it’s really tough to distinguish between bad behavior and sick behavior. I seem to be especially dense in this area. I need a pediatrician to board in the basement so we can borrow his or her diagnostic and prescribing skills at all hours, including holidays.

And I’m assuming my brain is fried at this point, because a) I don’t care about anything and b) all the usual helps aren’t doing it for me. I did watch the complete 2011 version of Jane Eyre, which helped a little. I love it so. But otherwise, I’m an automaton. I’m basically dead inside.

By dead inside, I mean I have a list of about twenty-five points about special-needs parenting which I am ready to start shouting about. If I were Jack, I’d be looking for lamps to throw off the deck. I wouldn’t mind smashing something, but it sounds like a lot of work. And a big mess, and I don’t have me waiting in the wings to clean it up while I decompress elsewhere. I mean I do have me, but me doesn’t want to clean up any rage-messes that I make.

I’m not going to list the bullet points which are making me furious. It’s counter-productive. I will, however, close with a list of random observations.

  • Charlie is being so good. Since his last med bump, he seems to be less rigid, more flexible. He will pray at home and at Primary again. There were years where he refused to do it.
  • February is getting me down. It’s just blah, you know.
  • I am excessively worn out by the sensory demands and behavioral idiosyncrasies of three separate SN children. It’s like an insane joke—how can we make this woman’s life so bizarre and difficult that it’s laughable? Hahahahahahaha. Joke’s on me.
  • I have a stronger core and, because the exercises make me want to throw up, I’m eating less. It’s a good diet.
  • If anyone asks me to do anything at this point in time, anything besides stay alive and tend to my needy brood, I am going to close my eyes for a good ten seconds, exhale loudly, and try calling down lightning bolts and gale force winds to signify my displeasure.

You can dance in a hurricane

I feel like this blog has stopped being funny, perhaps in the way that it stopped being excessively whine-y or compulsively approval-seeking, even when I didn’t realize it was. When I read to my students things I’ve written, I stick with the funny stuff. College writing classes aren’t really the place to talk about Jesus, at least not outside of the BYU. I never went to BYU, so I truthfully don’t know if religious subjects come up in all types of classes. When it comes to BYU, I know nothing, Jon Snow. I know as much about BYU as I know about potty training boys on the spectrum, which is to say, not a lot.

There was a time when I would try to take the horrible, poo-smeared experiences in my daily life and turn them into something funny. It was a method of coping, of taking control of an awful thing and consciously shaping into a story designed to make people laugh. But readers, I’m not a humorist. I’m just me, living this life and writing it down the way God tells me to, which may make me and this too much for some people.

I get it, and that’s okay.

On that note, Jack woke us up at five this morning. Even if I wanted to be an early-riser to exercise in the cold, dark, predawn (I don’t), I couldn’t do it because Jack likes to frequently get us up at five am for shenanigans. Five am mornings throw the rest of the day into shambles. We can sometimes get him back to sleep for awhile before the bus comes, but the morning is nevertheless shot. Everything is off-kilter. Autism rejects the household’s wish for a regular, seven am wake up time. Jack is grumpy the rest of the day. I’m impatient and irritable. Bedtime is a hazy mirage an eternity away.

Jack had to be restrained FIVE TIMES today. Twice at school and three times at home. This is what the five am rising does to us. It means Jack breaks the TV remote, tries to break windows, throws chairs down the stairs, and tries to hurt people.

When I drove to Costco this afternoon, I heard this line in a song on the coffee house acoustic channel (me likey) on the satellite radio: “You can dance in a hurricane, but only if you’re standing in the eye.”

Indeed, they have a point. You can move how you wish, but only in the eye of the storm. Dancing is impossible when you’re being whipped about.

This is where the earnestness comes in.

It’s one thing to be funny about the TV remotes and hobbit feet flying every which way through my life. It’s another to find the eye of the hurricane, a place of counter-intuitive calm at the center of the blowing fence posts.

The eye of my hurricane is Jesus. When I’m centered spiritually, the storm still blows, but I am not caught up in it.

Less-centered me would be tempted to think, “Well I like Jesus, too, but I don’t see how He is the eye of the figurative hurricane. How does that even work?”

I think it’s a blend of trying to be like Jesus, which includes doing what He taught, and genuinely believing He will give you strength beyond your capacity. Not just theoretically. For real. Actual forgiveness. Actual empowerment. An actual refuge.

This is what I’ve been learning in the last twelve months since I embarked on that unexpected and non-ironic spiritual journey. I’ve begun to figure out how to center myself in the eye of the storm and be peaceful there.

 

Do you see it?

Yesterday as we left the psychiatrist’s office and walked to the parking terrace, I thought about the gift that Dr. M is in our lives. It was drizzly and gloomy outside, but I felt like I lived in a garden sprinkled with mirrors, bouncing light around and above me.

We have a psychiatrist who has known us—all of us—for years, and who gets how it really is. She is an ally. She gives us the meds that make daily survival possible.

Despite the February dreariness, I am not dreary. I am filled up and content.

My boys have therapy every weekday in our home. Our insurance covers it. It’s helping them make real progress. All of these things were impossible, even a few years ago.

We have the very best respite helpers and therapists, support coordinator, behaviorist, pediatrician, ENT, gastroenterologist, teachers, classroom aides, speech and occupational therapists, and bus drivers. By and large, my family has faced, almost exclusively, acceptance and kindness when it comes to the boys and their challenges.

The boys have outgrown babyhood, and unlike many moms of the world, this is not something I lament. My children’s baby and toddler years were the hardest time of my life. They were the darkest, most grueling season. Those years felt insurmountable, but we have come through them.

As I drove through the city toward home, Charlie asked me 85,000 questions about Abraham Lincoln and the U.S. Treasury building and how many days it was exactly until St. Patrick’s Day. Truman ate fries and hummed. This thought pierced me, “Do you see how much I have done for you?”

It was a gentle, direct rhetorical question, prompting me to take stock of our path through the valley of misery, and out of it.

With sheer serendipity and angels aligning stars and so forth, we have found a weekend program for Jack. We have been looking for this for literally years. In the past, whenever we would find a place, they would tell us they didn’t take individuals with behaviors (irony, since these are the individuals who NEED weekend supports), or didn’t have enough staff or clients to make Saturdays a go. Or they didn’t like working weekends or holidays despite the immense need (and business opportunity). The few places that did provide Saturday care were full. We faced brick wall after brick wall, all while managing Jack and our other children every difficult weekend into perpetuity.

I have hated weekends for so long. I don’t remember looking forward to a weekend. It’s been years.

Except that is changing. This is the second weekend Jack has attended his LITERALLY PERFECT day program. Saturdays and Sundays, you guys.

God knew all along what Jack needed and what we needed so we could help Jack. When we couldn’t find our way, He found it for us.

This is my miracle.

Reflections on Getting Away

  1. Taking care of myself in a physical sense is easy on vacation. It just is. I have worked out every day and my back and hip are thanking me.
  2. I can sleep like a teenager, despite being an old person comparatively speaking.
  3. At times, I’ll think of what the boys are doing at any given time. But I’m relaxed because I don’t have to make it happen. It’s a kind of muscle memory, I guess, keeping track of everyone’s schedules even when I’m removed from them.
  4. I don’t care about publication, at all. I don’t care about home renovation. I don’t care about exotic vacations. Which isn’t to say that those things are wrong to care about. I just personally do not care about them. Are you depressed, you might ask, since you claim not to care? Here’s the thing: I am not depressed. I feel peaceful. Even. Happy and calm. I feel good.
  5. What do I care about? Teaching. My children. Jeff. Taking care of my core (never thought I would utter that phrase). Asking God what He wants me to do, and then doing it. If that sounds self-righteous, that’s not my intention. This is how I feel, and I like it.

I think this might be balance.

There is a law irrevocably decreed

There is a law irrevocably decreed in heaven that when you are planning a rare getaway with your spouse, one of your children will start vomiting.

Such was the case a few days ago, when Jeff and I felt the dream of the desert oasis hideaway slipping through our fingers as a certain child persisted in tossed his cookies. Then another child told me his right ear hurt. “Do I feel sick?” he asked me, at the Instcare clinic. “Only you can answer that question,” I squarely told him.

And so, our hopes were flickering. You know what made me hold on? The thought of sleeping in. That and reading a lot of books. And grading a whole pile of papers at once, without being distracted.

“It may still happen,” we said to each other, more than once. But we maintained caution. I got crabby thinking about the possibility that all our planning and preparation on the childcare front (a serious feat) might be for naught.

I think the hardest part wouldn’t be not actually going on the getaway. I kind of hunker down when there is no option for escape and find homey ways to cope. Hygge, if you will—finding enjoyment in the simple pleasures. Carving out time for the things that hold me up. This week I felt the greater sorrow would be thinking we would get to leave, of coming so close to going, only to have it foiled by vomit.

Dear reader, the vomiting stopped. The ears, it turned out were not infected. There was no strep either. Everyone got better.

And thus we miraculously drove off into the desert, talking about our goals and dilemmas, and books about British history, with which I am weirdly obsessed.

Obsessed, and grateful.

Dragons

I am struggling to feel competent in my physical strength. I think I have always struggled with this, possibly because I do not hail from a line of gracefully coordinated or athletic types. I do not see myself as physically strong. Doing physical therapy for my core goo has proven to me that I am, indeed, not exceptionally strong. I’m getting stronger, but comparatively it feels subtle.

And it doesn’t help that I just read a Robin McKinley book. Her protagonists are women who literally slay dragons. They can live alone in the woods through a winter, with only a knife and a dog for company. They face beasts and violence with bravery and fortitude. It usually comes close to killing them, and yet, it doesn’t.

I feel my mortal limitations. I am a woman. I feel weak, not emotionally or mentally or spiritually. Just my physical self.

There have been eras of my life where I haven’t felt weak, such as a) when I was a kid on the swim team, toasting my peers in the breaststroke and freestyle, and b) in the years when I had no kids, or just two kids, and I walked basically every day. I tromped around parks, hiked trails, and wore an imaginary footpath through my neighborhood. I exhausted three jogging strollers, though to be frank, I do not actually jog. During these periods, I found pleasure in moving and felt rejuvenated rather than inadequate in my fitness attempts.

Is it that I’m older now? Is it that I have four children, whose demands on my time sometimes feel like fetters? Is it the comprehensive nature of special needs parenting, which places constant pressure on my neck and shoulders? Is it that I am a mortal woman and not a Robin McKinley heroine, who is ostensibly mortal but suspiciously superhuman in her strength?

The physical therapist tells me that I am getting stronger. I can feel it, too. Really, there is so much I can do, but these days I do it with more pain. I can walk and lift my five-year-old and carry groceries and laundry. I can do things like vacuum the church of a Saturday morning for a solid hour and restrain a violent Jack on the floor, keeping out of the way of his teeth and hard, hard head.

I am capable of doing what I need to do. I am emotionally unafraid of facing the realities of life with a nonverbal, mentally disabled preteen. I am spiritually astute in that I have trained myself to listen. I spend less time trying to validate disobedience and more time rushing to be obedient and then looking around expectantly for the blessings. In a cognitive sense, writing, reading, and teaching keep me from stagnation and lift my mood. I feel capable in those aspects of my life.

Maybe I’m sufficiently strong, with the potential for improvement.

Maybe facing my physical limitations is my next baby dragon to face.

 

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.