Author Archive for Megan

Summer of Change

I’ve had a trying week for various reasons. Long story short, just days before the first day of school, we had to move our 4th grader to a new school. It was unexpected, but necessary. It stressed the heck out of me, but it was the right move and I’m peaceful about it.

The last week of summer is the hardest for me, because I am getting my teaching materials ready and driving to the university for faculty meetings and such, but my kids are still home, and they still need all the same things they’ve needed all summer when I was able to be fully present.

Lots of people mourn the end of summer, but I love fall, and back-to-school is particularly delicious for school nerds like me. I’m happy for the change, but the transition is anxiety-producing for the people in my family.

This summer has been complex. We have been able to travel more than any other summer ever. We have begun to make slow and steady progress on repairing our beat-up house. We have had far more daily downtime and peacefulness.

We have also been mourning the loss of Jack as a member of our household. This has not been an easy thing. Grief has been my weary companion this summer. I’ve floated on a river of sadness, letting the change in our family wash over me and through me. I’ve let myself feel the trauma of not having my special-needs thirteen-year-old at home. I’ve opened myself to all the hurt and all the emotion.

So this summer has been extraordinary, but also incredibly hard.

Jack left our home for full-time care.

Home life stopped being a constant hurricane.

We took vacations.

I turned 40.

Henry started driving.

We missed Jack.

We felt empty sometimes.

We grieved.

Jeff and I celebrated 20 years of marriage.

All 4 of my kids are attending new schools this year.

We have experienced change and are bracing for more.

I went to the temple this afternoon in an effort to dial down my own anxiety. It worked. It worked so well that I came home and passed out on my bed for two hours.

The moral of this story is, I suppose, ask God for comfort when you need it, eat a chocolate shake (which I also did today), and take a nap for Pete’s sake.

Life will look better. It just will.

Being Human

As part of our Celebrate Twenty-Years of Marriage Getaway, I got a pedicure this afternoon. This is how it went down.

A. As the nail tech removed the old shellac from my toes to make way for the new, the two women sitting to my left, who were getting their own pedicures, had a conversation.

B. Tan Woman in Shorts asked Brunette Woman with Bangs if her classroom was ready for the beginning of the school year this coming week. Brunette Woman with Bangs explained that preparing for the school year has been busy because she is moving from teaching mild-moderate special ed to severe-with-behaviors.

C. Tan Woman in Shorts, also a teacher (1st grade, with a fair number of students with IEP’s; I know this because she told Brunette Woman with Bangs about it), upon hearing that the other woman was choosing to move to a class with extreme behaviors, said, “Oh wow! Why?”

D. I felt my body freeze into a human shaped column of tension. If these two women, roughly my same age and both working in the field of special education, started railing against badly-behaved students or “bad” parents who “teach” their disabled children to behave badly or the perils of teaching “the worst of the worst” as far as behaviors are concerned, I was going to harden into a lump of clay, and bake in the desert heat into an empty sandstone replica of a woman. “I will not be able to sit here and do this,” I thought. “If the judgment and the unknowing condemnation emerge, this pedicure, this afternoon, and possibly this vacation are going to turn into a cluster cuss of sadness.” Then I thought, “Okeydokey, apparently I am more fragile than I currently realize.”

E. Tan Woman in Shorts repeated that the Brunette Woman with Bangs’s workload would surely increase (although Brunette Woman pointed out that she has 8 paras—para-educators, or teacher’s aides for special needs classrooms—to help with the various needs of the “behavior” students). Tan Woman used the word “crazy” several times when suggesting that Brunette Woman’s teaching prep and classroom management would be quite different this year.

F. And then. This. Brunette Woman said she chose this teaching load because she needed a change. She sounded hopeful. Positive. Capable.

G. Both women began discussing their own children, and the balancing act of being teachers for other people’s children, while managing their own kids’ needs.

H. Meanwhile, the nail techs and Tan Woman in Shorts began to discuss acceptance of teens and tweens who aren’t religious in this mostly religious community.

I. Nail Tech with Vibrant Red Topknot described moving to this area in middle school and finding a lack of acceptance. Tan Woman said her sons sometimes struggle to fit in as outsiders in this area’s social culture. Petite Middle-Aged Nail Tech explained that her experience has been different. Her two teen daughters, Asian, not Mormon, and with a single mother, have been embraced and accepted by their peers. Petite Nail Tech said they have great friends and participate in sports and cheer in their high school.

J. Between reading snatches of my book (The Thing About Jellyfish, a lovely and heartbreaking YA novel by Ali Benjamin, which features a protagonist who doesn’t fit in, who sees the world differently, who can’t be cool or popular because she is quite unique and a lot like my third son in many ways), I watched the nail salon tableau play out around me.

K. Brunette Woman’s pedicure was finished at this point, so she moved across the room for a manicure. She told the nail tech that this was her birthday treat to herself, and that she felt incredibly relaxed.

L. I exhaled and dropped my inward defenses. Brunette Woman chooses to work with the difficult kids. She has a large family through a yours-mine-ours blended situation since she remarried, following the death of her husband, a few years ago (you learn lots about people at the nail salon, see).

M. I went from being a live wire of grief and defensiveness to being a woman who saw another woman for who she is: a complex, real person with sadness and challenges and gifts and abilities. I saw her as a competent, calm, and rather amazing person.

N. I felt great gratitude to this stranger for not saying unintentionally mean things about special-needs kids who behave badly because it’s a function of their disability. I was grateful to her for choosing to work in the field, and for not shying away from the hard ones.

O. I felt compassion for a woman who has experienced great loss herself, though in a different way than me. I felt admiration for her ability to move forward and do so much, while staying positive.

P. This is what ran through my mind: “We all struggle. We all have that which makes us feel other. We all are sometimes lonely and misunderstood. We all are sometimes overwhelmed.”

Q. Then, I thought this: “We aren’t so different. We just feel that we are. The trappings of our lives make us seem different. Inside, we’re just humans. All of us. We have more in common than a surface-y look might reveal.”

R. I could’ve joined in the discussion with the women around me. I could have told them about Jack and Charlie and Truman. I could have led the conversation with my tale of navigating the IEP from the other end of the conference table, and floored them with horror stories of parenting that lies on the fringe because it’s wildly not typical. 

S. But I didn’t want to speak. I am emotional about lots of topics these days (clearly), and it’s occasionally refreshing to fly under the radar, among people who don’t know that I’ve spent many a public outing and school behavior intervention meeting being the lightning rod for my children’s problems in positively interfacing with the world.

T. So I didn’t speak. Except to tell the nail tech that the water temperature was fine. And to say thank you when she finished.

U. I left with a sense of my eyes having been opened—to other people and their personal tales of woe. None of the women in that salon came in there looking like sad pandas. But I saw that they carry hidden grief with them. That we all do.

V. I felt that God showed all of this to me to help me hold on to the soul-deepening compassion my boys have brought into my life.

W. I felt humbled.

X. Being quiet can teach one a good deal.

Y. Being thankful empties fear from one’s life.

Z. Being human gives us a vast common ground from which to begin.

 

Plays! Plays! Plays!

In celebration of being married FOR TWENTY YEARS, PEOPLE, Jeff and I are on a getaway in our favorite desert oasis, with the express purpose of seeing plays. I am not speaking hyperbole when I say I have yearned for years to go see some Shakespeare and some musical theater, which since we became special-needs parents, has been one of many a pipe dream. Going to shows was for people with normal lives. By definition, that didn’t include us.

I’m an English teacher, a former English major/graduate student, a bibliophile, a Shakespeare junkie, and also a big nerd when it comes to LOVING musicals. So when I said to Jeff earlier in the summer, “For our 20th anniversary, I just want to go to the Shakespearean Festival. That’s it. It’s all I want,” and he responded, “Sounds good to me,” I knew that he was (and is) my perfect match. Not because he loves books, Shakespeare, or musicals like I do, mind you, but because he loves me, and because he is flexible. And now we can do this sort of thing because Jack has full-time care.

Thus far, we’ve seen Newsies, Guys & Dolls, and (because we had extra time today) Dunkirk (not Shakespeare or a musical, obviously). Tonight we see As You Like It, and tomorrow, A Midsummer Night’s Dream. I have finished reading two books on this trip, too. I feel quite accomplished. I think we may try to squeeze in another movie before we go home, because this diet of live theater + print/film media consumption is totally my jam.

I love stories. I just LOVE them.

Newsies took me back to high school, when Christian Bale was the hot thing singing about seizing the day and Santa Fe. We saw it beneath the stars and I wanted to do a song and dance number about the fact that I was at a live musical and no kids of mine were there to wreck it, huzzah!

Guys & Dolls was some kind of time capsule for an era when men wore fedoras and women were referred to as dolls, etc. We saw a Thursday matinee, which meant it was me, Jeff, and a theater otherwise comprised of retirees. The line of walkers and other assistive mobility devices outside the door to the orchestra section looked like the rows of strollers outside the rides at Disneyland.

Watching Dunkirk this afternoon was, for real, a spiritual experience for me. I was awash with emotion which culminated in this thought thread: Life calls us to do big, scary, deadly things. Our job is to do them. Whatever the outcome. We are here to do what life calls us to do. We may only be small humans with limited abilities and influence, but that doesn’t matter. God knows what we can do, and we can prove our bravery to him. Also, wow, the heroism and humanity and sacrifice amid war. And I inevitably envisioned my teen son being caught up in such fraught scenarios. Those soldiers were kids, and they saw and experienced horrifying things. Again, because we saw a Friday matinee, it was us and the retired folk. They were a respectful crowd. I was a weepy young(ish) thing.

Tonight, it’s Shakespeare, and I’m jazzed. The Bard’s plays are a) pure genius, and b) a workout for my brain, and a feast for my language-loving self.

A few more thoughts on having been married twenty years:

  1. Life actually does move pretty fast. Even when it’s like slogging through molasses or trudging through a snowy/prickly ice field, the overall passage of time is far faster than one might expect.
  2. I’m glad I’m not twenty anymore. My back hurts more now, and my metabolism isn’t what it once was, but I know a lot more now than I did then. In no way would I want to go back. Twenty years later is much, much better. Forty is vastly preferable to twenty.
  3. It’s a gift to be with someone through so much hardship. Jeff and I grew together. We have worked together. We raised Jack together for thirteen years—an incredible feat. I think God gave us each other before he gave us Jack, because he knew we would need this partnership to carry our family through the whirlwind of disabilities parenting.

A Really Long Speech I Gave on Jesus to a Bunch of Teens

Let’s play a game of Would You Rather. I honestly don’t know if this is an actual legit game, or it my family just invented it sometime during my childhood. Anyway, the basic idea is to present someone with two possibilities and ask, “would you rather (insert option A) or (insert option B)?”

A few examples that I remember my younger sister asking me:

“Would you rather be a lamp or a rug?”

“Would you rather have a sore throat or the stomach flu?”

“Would you rather be able to fly or be invisible?”

“Would you rather live in the mountains or by the beach?”

“Would you rather eat pizza or tacos?”

Okay, we’re not done yet.

Now we’re going to take a poll. The purpose is to get a picture of who you are:

Raise your hand if you are the type of person who, when you leave town, packs everything you own, including maybe 12 pairs of shoes.

Or, raise you hand if you tend to pack light. Just a change of undies and your toothbruth.

Or maybe you pack, “just right,” meaning you take exactly what you need, although anyone in either previous camp could argue that they have packed the “just right” amount.

When you have a task to do, do you wait until the last possible second to do it? Or do you begin early and know it out well before the deadline?

Which phrase best describes you: keep it simple, or do it right?

Would you rather be told exactly how to do something, or do you prefer to jump in and figure out a task for yourself as you go?

The good news is that there is no wrong answer to these questions, just like there is no wrong way to be a human. We all have different interests, talents, quirk, hang-ups, strengths, and struggles.

Our Heavenly Father knows this about us because he made us this way. He knows every weird and amazing thing about you. He has known you for a long time—longer than you can remember.

He loves the procrastinators, the over-packers, the independent spirits, and the people who always look for the shortcut. He loves all of us. He loves you, just as you are.

He also know what you are capable of, which is why we are here, meaning on planet earth, in mortality, with a physical body. He already knew we were good, but that we wanted to be better. And so, with the help of our Savior, he created the earth for us, a place where we could live as autonomous beings, where we could struggle and work and learn things we otherwise couldn’t learn as spirits.

Because he knew that mortality would be straight-up difficult, confusing, and sometimes painful, he gave us a path, a roadmap back to him, which is the Gospel of Jesus Christ.

He didn’t place us here to fail. He put us here to grow, and he gave us the Savior, to help us return to wholeness with our Heavenly Parents.

But you guys know all of this already.

Sometimes, though, there is a difference between KNOWING that something is true, and really INTERNALIZING it.

So I’m here to tell you a story of how I came to know the Savior, and to understand that Heavenly Father is involved in the details of my life. My goal is that this story will help you see that your Father in Heaven and Jesus Christ are intimately involved in the unfolding of your life, too.

I have four sons, ages 15, 13, 9, and 5. Three of my boys have autism. My second son, Jack, is the most profoundly affected. He is nonverbal. He also has a rare syndrome that affects his cognitive abilities, meaning he is mentally disabled. Physically, he is a big, healthy boy with red hair and ginger skin, meaning alabaster or pasty white, depending on how you like to describe it. He has freckles and green eyes. He’s super cute.

Because of the nature of Jack’s disabilities, we are no longer able to continue caring for him at home, and two and a half months ago, we placed him in a group home, permanently. It was the hardest thing I have ever done, and you guys, I have done some hard things over the years as Jack’s mom. He lives a couple of hours away from us, and he has full-time staff devoted to his care. It’s been a tough transition for us as well as him, but we are all adjusting and making a lot of progress with accepting this new life.

Because he can’t speak, it’s tough for Jack to communicate his wants and needs. He understands much of what he hears, but he can’t verbalize his own thoughts. We’ve only had limited success with sign language and picture communication systems.

Imagine your life if you could not tell people what you needed, what you wanted, how you were feeling. It would be a hard life, and that is what my Jack lives with every day, always. He gets frustrated, understandably, and because he has the cognitive abilities of toddler in many ways, he reacts the way a toddler might to disappointments. He hits, head-buts, throws things, breaks things. And he’s a big, strong teen.

The aggressive and destructive behaviors don’t define who Jack is as a valiant, eternal being. Instead, they are a function of his disabilities and his limitations.

But man, they can make for some difficult situations. A few years ago, Jack started getting unpredictable and sometimes violent when we were driving places. As a younger kid, he would always seems to find a way out of his seatbelt and dance around the car, usually on the freeway, sometimes while taking his clothes off.

Three years ago, right before Christmas, we were in a drive-through waiting for his fries. They were taking forever with our order and Jack began to attack me. There’s no other word for it. He was punching, biting, clawing me. He began to climb into the backseat and attack his younger brothers, so I held onto his waist and dragged him back into the front seat. He tried to unlock the door and run away. As people drove around us and stared, I was alternately trying to keep Jack inside the car and away from his brothers, and also protect myself.

At one point, my third son screamed, “Call the police!” I totally would have done it, but I was defending my face from kicks and hits and literally could not pick up my phone.

In a panic, I thought we had to get home. There was nothing I could do in the car to keep us safe. So we got our fries, which he threw across the car, and drove away. As we approached the biggest, busiest intersection in our area, Jack again started to attack me. He leaned back and kicked the gearshift into reverse as we entered the intersection. The car stalled. I screamed. Miraculously, no cars hit us. At that moment, I shouted this prayer, “God, help me!”

Immediately, Jack stopped hitting and kicking, and instead started to cry. I put the car in drive, and drove to a nearby parking lot where I called my husband to come help us. I was shaking, Jack was happily chirping at this point. I thought, “What is next for us? How am I supposed to be parent this child?” The Spirit spoke these words to my mind: “Look into group homes for Jack.”

Wait, what? A group home means I am an inadequate mother who can’t take care of her own kid.

Do you ever argue with the spirit? Because I was. This was the response I got, “It isn’t going to get easier with Jack. This is part of his life trajectory and it will be alright.” I was then flooded with peace. And frankly, I appreciated the honesty of knowing what was really going to come. It was an effective reality check.

Soon thereafter, I began looking into residential care for Jack and found that it was almost impossible to get in our state for someone under the age of 18. Why would I get such a direct prompting and then be met with brick walls and dead ends? I nevertheless felt that Heavenly Father was preparing me for something in our future.

Then four months later, we had another near-death experience in the car. This time we were driving in rush-hour traffic and it was SLOW. Jack was losing it. When he began choking his brother, I pulled over and turned on my flashers. Jack climbed in the front seat and started beating me up. I called my husband and Jack knocked the phone out of my hands. He pulled my hair. He tried to run from the car and into traffic. I pulled him back into the car where he continued to punch and kick me. For the second time in my life, I screamed a prayer, “God, Help me!”

Perhaps 30 seconds later, I saw flashing lights behind me. I have never been so relieved to see a cop pull up behind me as I was at that moment. He was a detective, in plain clothes and an unmarked car. He walked toward us on the passenger side and saw Jack thrashing me. I still remember the look on his face as he came to the driver’s door and held out his hands as though to help, but he wasn’t sure how.

I told him that Jack was my son, was mentally disabled, and was hurting me. He asked what he could do to help. I told him if he could stay with us for the twenty minutes it would take my husband to drive to where we were, then we would be okay. So he stayed. Jack climbed in the back of the van and I went with him, to protect Charlie.

The detective, who (I am not kidding) looked like Thor but with short hair, sat backward in the driver’s seat, facing us. Jack continued to hit me off and on for that twenty minutes that went on for what felt like nine hours. He asked us questions and spoke kindly to Charlie. He said that as a detective he doesn’t make traffic stops or really even assist with traffic emergencies. But he did stop that day, and I know it was in response to my prayer.

Life with Jack did, in fact, not get easier. It was just consistently, incredibly hard. People would often send me this scripture in Mosiah 24, because I guess if you look up Mosiah 24: 14, there is a picture of a Jack and me.

“And I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.”

We were in survival mode. It was NOT easy, but we did feel that God was helping us carry our burden.

I knew Heavenly Father knew my challenges, and I knew that when I was completely desperate, he responded instantly. But life was still basically impossible.

What about those times in your life when you are praying and trying, and THINGS AREN’T CHANGING? What then? Does that mean God isn’t listening at that moment? That he doesn’t care?

No. My experience has shown me that he is listening and he does care. But if he instantly fixed every hard/painful situation, when would we have the opportunity to exercise faith?

We know that we came to earth to grow, to become more than we were. We have to be challenged so we can be humbled, which readies us to turn to our Heavenly Father and our Savior.

Let’s talk for a minute about miracles. The answers to my scream-prayers in the car were one form of a miracle.

But what else constitutes a miracle? Is it when you pay tithing with the last of your money and then a check arrives in the mail for the exact same amount? Is it when someone gets a terrible diagnosis, but then goes in for surgery and the doctors find nothing wrong, everything is healed?

A miracle, in my view, is anytime we have divine help that allows us to keep going—take a nap, ugly cry, eat some sugar, pray, talk to Dectective Thor—and then move forward.

I don’t believe miracles have ceased, compared to those described in the scriptures. They happen all the time, in all our lives. They happen any time your Savior’s atonement gives you power—the strength to carry on despite all the odds stacked against you.

A miracle is the chance to heal from hardship and try again. A miracle is finding peace, even when life doesn’t go according to plan (which, if it hasn’t yet, it will. At some point). These things are possible because of the miracle of the atonement of Jesus Christ.

I remember sitting in a Relief Society lesson a couple years ago when my friend Shirley was giving the lesson on the Savior. She had brought this picture of two horses pulling a wagon. The photo was taken from the perspective of the person driving the wagon, so we were looking over the ears of these two horses with their heads down, leaning into the load as they pulled it together.

I stared at that image throughout the lesson, and in my mind I heard the words of Jesus from the book of Matthew in the New Testament, “For my yoke is easy, and my burden is light.”

Before that moment, I DID NOT understand that the Savior’s atonement wasn’t just an abstraction, but a real force. I don’t know how it works—easing all our burdens, cleansing all our sins, comforting all our heartache—but it does.

I saw that image of the horses working together, yoked together and pulling in tandem and the Spirit said to me, “Jesus Christ is beside you, helping you.” And I knew that he was! I knew that he hadn’t abandoned me or expected me to figure things out on my own. He, in reality, was pulling the lion’s share of the load. He had been helping me, even when I couldn’t see it.

A few weeks ago, my husband Jeff left really early in the morning for work, much earlier than usual. He came back a couple of hours later where I was being lazy and just barely waking up. Lazy! He told me, “I did a good deed.” He’s an engineer who works with MRI machines in hospitals—installing, maintaining, and fixing them. He told me that he had gotten a text early that morning from the children’s hospital’s imaging department. Their MRI wasn’t functioning and they had a little 3-year-old girl already sedated, waiting for her scheduled MRI. Kids have to be sedated for MRIs because they can’t hold still very long and you have to hold very still during an MRI scan.

The imaging department asked if Jeff could come in, right then. He didn’t have to. He wasn’t on call and it was way before his scheduled time to be there. But he got out of bed super early and went anyway, because Jack has taught us to notice and care when people are stressed, struggling, or need help. Jeff got the MRI up and running, the radiology staff gave the little girl a bump in her meds to help her stay asleep just a bit longer, and the MRI went on as planned.

After this experience, I said to Jeff, “That little girl’s parents don’t even know what transpired to make their daughter’s MRI possible today.” And right then the Spirit said to me, “You don’t know how many miracles have transpired for you.”

I was rendered speechless. And I knew it must be true. I don’t even know all the ways that Heavenly Father is making the blessings of my life possible.

Is your Heavenly Father aware of your personal challenges and hardships? Is the Savior helping you? How do you know? He speaks to us through the Holy Spirit, so maybe the better question is, how do you feel the Spirit?

In my life, I’ve seen that when I have a pattern of praying and reading the Book of Mormon, the Spirit communicates with me. The end. He just does. Maybe it’s that when I’m doing these devotional things every day, I am different. I’m better able to listen. I’m receptive.

Remember we are talking about surviving the messes of our lives by praying and reading the Book of Mormon. This is what Alma 37 says, in verses 6 and 7, “Now ye may suppose that this is foolishness in me; but behold I say unto you, that by small and simple things are great things brought to pass; and small means in many instances doth confound the wise.

And the Lord God doth work by means to bring about his great and eternal purposes.”

Does God think that prayer and studying the Book of Mormon are sort of okay, but not all that great? NO! It’s how he communicates with us and works miracles in our lives!

It continues, in verses 16-17, “But if ye keep the commandments of God, and do with these things which are sacred according to that which the Lord doth command you, (for you must appeal unto the Lord for all things whatsoever ye must do with them) behold, no power of earth or hell can take them from you, for God is powerful to the fulfilling of all his words. For he will fulfill all his promises which he shall make unto you.”

I read this and knew that the covenants that I have made with God aren’t just promises on my side. He is bound to help me. He wants to help me. He is helping me.

And then finally, these words in verses 35-37, “O, remember, my son, and learn wisdom in thy youth; yea, learn in thy youth to keep the commandments of God. Yea and cry unto God for all thy support; yea, let all thy doings be unto the Lord, and whithersoever thou goest let it be in the Lord; yea, let all thy thoughts be directed unto the Lord; yea, let the affections of thy heart be placed upon the Lord forever. Counsel with the Lord in all thy doings, and he will direct thee for good.”

Cry unto the Lord in the middle of a busy intersection when your disabled son is attacking you and kicks the gear shift into park.

Cry unto the Lord on the side of the road during rush hour traffic when that same kid is trying to kill you.

Counsel with the Lord when someone asks you to do something good really early in the morning and you’re like, really?

Counsel with the Lord when your day goes badly, or when you day goes great.

Counsel with the Lord and ask him what he wants you to do so you can feel his love and be happy.

The concept of these versus in Alma 37 is two-fold in my view. First, the Lord is asking us to turn to him in prayer. Second, he’s asking us to be humble enough to be obedient to his gospel and really listen to him.

When we do these things, he is bound to bless us. He can’t NOT bless us. He will help us.

He has given us his perfect first-born son as a sacrifice on our behalf.

Our Savior is beside each of us. He knows you. He is your loving older brother. He is helping you pull your heavy load, even when you don’t realize he is helping you.

Jeff and I went and saw Jack yesterday. It was the best visit we have had. He was happy. He was excited. He is healthy. He is making lots of progress. And he wasn’t sorry to see us go. He feels contented in his new home where he needs are being met in a way that couldn’t happen anymore in our home.

My life has shown me that God loves my son Jack. He loves me enough to tell me in my hour of need exactly what lay ahead in Jack’s future. He loves us so much that he, no kidding, gave me a step-by-step tutorial, spiritually-speaking, and showed me what to do to secure Jack’s group-home placement.

God loves my son, who can’t speak, who hits people and breaks things, who can’t pray and ask for help. Jack could be described, in terms of abilities, as what the scriptures refer to as “the least” among us. And yet, the Savior and our Father in Heaven help him and direct his care.

Being Jack’s mom has shown me that God knows us and loves us, every one. To God, there is no “least among us.” He knows what we need to live our lives and return to wholeness with him. He knows how to help us.

A Master Class in Grief & Growth

I had a conversation with my children’s psychiatrist yesterday where I expressed that I want my boys to learn resilience and flexibility.

Life with Jack has already taught all of us a great deal about compassion, faith, and hope. We are slower to judge. We are better equipped to see the good in people, despite the cumbersome trappings of bad behavior. We are kinder. More patient. Softer. Humbler. Less worldly.

All of these traits are tremendous gifts.

Now that Jack’s care is delegated and he isn’t in our home, I have the time and the energy to see what my other children really need right now, at this moment, currently. It turns out that they need exactly what I myself need at this point in time: the ability to be flexible, to rise from the ashes and keep moving, to reinvent their lives when things haven’t gone according to plan.

Because, hahaha, they haven’t.

I’m focusing on having a growth mindset—on being open to learning new and possibly uncomfortable things, because I’m not naturally good at them.

Allow me to list the Things I Am Currently Learning:

  • To live in the moment. I haven’t been dwelling on past events, nor (strangely) on what’s to come. I am sort of suspended in the right now and it’s a pretty great way to live. Except that I need to write a syllabus soon and finish the back-to-school shopping so…..yeah.
  • To accept God’s will for Jack and for me. I never envisioned my life playing out this way. I have not yet totally come to terms with Jack being so disabled that I literally could no longer care for him at home. It feels very wrong to me to have my thirteen-year-old living in a group home far away, even though I know it’s right. God showed me it was right in a step-by-step tutorial of sorts, so there’s that. I know that someday everything will be right and I’ll understand why, but now I’ve got the mists of darkness thing happening around me. It’s one of those times when I see the options as a) faith or b) confusion/bitterness/being lost. I choose faith, but that doesn’t mean it’s an easy path.
  • To face my grief. It hurts, but it’s supposed to. Avoidance doesn’t work. The healing path is right through all of the pain and the coming to terms with reality.
  • That all things are spiritual. This is such a deeply unpopular idea in our culture that to even raise it is like asking to be firebombed on the interwebs. *Note to people on the interwebs: Please don’t firebomb me for my laser focus on spirituality. Thank you.* But truly, I’m finding that despite our social climate which subconsciously (also overtly) says with vigor, “spirituality is ridiculous and can only maybe be considered cool/okay when it’s tied to the health food industry and non-Christian beliefs with a healthy dose of yoga thrown in,” I am here to stand on a wall and announce to everyone, everywhere that ALL THINGS ARE, INDEED SPIRITUAL. Human eyes just can’t truly see the depth of perspective affording every single aspect of the mortal world the shadows and light and contours which reveal so much more than non-spiritual views of life can reveal. We honestly can’t see our potential unless we consider our lives through a spiritual (i.e. truthful) lens. Life without spirituality is a little doodle in the margins of a grocery shopping list, where life with God and divine connection is a massive, polished sculpture. This is what life with Jack, and then life without Jack, has taught me. Closing ourselves off from spirituality, and specifically Jesus Christ, essentially places us in a box with no windows, light, fresh air, or even internet. It’s isolation from understanding, from Godly connection, and from the miraculous ability to rise above the hail storm of human life on earth. I know what this feels like because, for many years when Jack was small, I didn’t see the spiritual connection in every aspect of my family’s life. I closed myself off from Jesus because I thought he wanted me to do it all myself—that it wasn’t his job to bail out inadequacy and stupidity. In the intervening years when I learned that Jesus already IS helping me, and that he’s waiting to shower me with greater power and peace when I turn to him, my life stopped feeling like a prison and began to evolve into a place of real freedom, with a stunning view of things to come. (Also, clarification: I really like yoga and I have no ill will toward healthy eaters or people who eschew Christianity, so stand down. Bless you and carry on).
  • To be gentle with myself, and to self-advocate. I am, by nature, a rescuer and a people-pleaser. It’s not always the best way to live your life. Experiencing this loss of Jack from our home and our care has shown me that I can’t always be everything to everyone. When you are drowning, you have to focus inwardly before you can reach out to help anyone else. This has been a moment of maturity and a decent wake-up call for me. And it doesn’t mean I’m now really into being selfish. It means I am learning to take better care of myself so that I am equipped to help other people. It’s the essence of provident living, guys. I’m glad this lesson has materialized in my life.

Now that I’m looking back on this list, I can only say, “Wow, that escalated quickly.” This is what happens when you give yourself a writing prompt with no hidden agenda of what you secretly want to say, and then sit down and just WRITE.

Thank you, writing teachers, who taught me this.

And thank you for reading.

Relief

While we were on vacation, I felt a deep sense of calm.

This seems like an obvious way to feel while vacationing, but I haven’t before experienced it at this level. I was truly peaceful. Truman shrieked and wailed a number of times—it didn’t rile me. Charlie had rigidity issues relating to clothing and other minutiae, meanwhile I was a placid pool of water, unfazed by the mini-meltdowns (all meltdowns feel small compared to Jack’s teen-sized tantrums).

When we returned home, I felt happy to be here. I’ve mentioned before that this is a novel feeling for me after leaving town. Before, a return from a trip meant stepping back into the constant gale force winds that blew through my life for thirteen years. One can’t approach the end of a vacation without foreboding and despair when one knows regular life is going to resume kicking one’s can as it reliably has for so very long.

I understand the “home, sweet home” sentiment now. While home isn’t perfect, it isn’t a boot camp with people screaming in my face or Code Brown cleanup duty at all hours of the day. It’s a pleasant place to come back to.

Home needs a lot of attention with regard to paint, flooring, and basically anything Jack ever touched. But home is ours, and it’s peaceful now. It’s a place of refuge where before, it wasn’t. We used to live in the equivalent of an airport. It was always chaotic. People were always stressed. There was always movement, hurrying, busyness. It wasn’t restful and the bathrooms were gross.

For many years, I only liked my house when it was dark outside (and in). When the boys were asleep and Jeff and I watched Victoria or The Crown or Downton Abbey, I liked the way the muted light of the TV played off the surfaces in the great room. In the dark, I couldn’t see the damage to the walls. The beat-upon dining table just looked like a table-shaped shadow. The kitchen counter tops gleamed dimly, and I felt that one area of my house/family/life was neat, respectable, and under control.

I only felt this way at night when the guys were in bed and Jeff and I claimed the evening as ours. Otherwise, the house was Terminal 2 of JFK.

I had a pretty decent sized breakdown last night thinking about Jack. No matter how much peace I find during the day or while on vacation, late-night exhaustion inevitably sneaks up on me at one point or another and I once again descend into the pit.

The pit isn’t a place where I question if we did the right thing. I know we did, because we did what God told us to do. But I am wracked with sorrow at the separation of Jack from our family. We no longer handle the daily struggle of Jack’s care, but we also don’t get to see his sweet moments. We are removed from the positive as well as the negative, and sometimes the weight of this lands painfully on me.

When I finally drifted off to sleep, the sadness remained. But I found that it was manageable, palpably contained by a calm steadiness that descended on me. This calm did not originate within me. It came after I prayed for relief, and for Jack, and for the ability to move forward.

I’m inching onward.

 

I Do Not Have Three Children. I Have Four.

You know that feeling when you have a night of no sleep, bookended by two big, busy days, that all merge into one enormous travel day/night/day of deep confusion and harrowing sleep deprivation? That’s where I am now.

But one really doesn’t feel that one can complain about post-Hawaiian vacation jet lag and the cruelty of the red-eye flight that is the hallmark of air travel leaving the islands. Know why? Because it’s a decidedly first world problem, that’s why.

Waaaaaaaahh, I’ve been gobsmacked by the inhumanity of jet lag following my trip to paradise, booooo hooooo.

See, no one cares. And rightly so.

I got to go to the big island of Hawaii for eight heavenly days. I don’t need sympathy. I just need sleep to return my sense of direction and fortitude.

Meanwhile, I just took a two-hour nap and sucked down a Coke. I’m feeling vaguely human, which probably means this isn’t the best time to write, but oh well. I spent eight days without a computer (my laptop is the size of one of the smaller Hawaiian islands, and thus, didn’t come along with me), so I’m ready to dive back in. This post may have to be deleted later when I am more lucid. We shall see.

The trajectory of my thoughts as we vacationed followed an arc that roughly went like this: 1) awe, 2) astonishment that we were in paradise doing regular/amazing vacation things! with our children, 3) a bittersweet aftertaste that Jack wasn’t with us nor could ever be with us in such a setting (at least until the resurrection, yo, when all the disabilities are excised and he is restored to his glorious eternal self), 4) a sense of incompleteness at the reality of being with my husband and sons, a family that never feels quite whole anymore,  5) defiant joy—at actually being in Hawaii with my three boys whose lives chart a different course than Jack’s, and who also need my time and nurturing.

So yeah, I swam through bunches of emotions. They weren’t all bad. I’ve found that any time I am away from home, it feels less weird that Jack is gone. I believe this is because I am removed from my daily routine anyway.

But then there are times like last Monday evening, when a professional photographer took pictures of my entire extended family at and near the beach. He was organizing us into family units for the big group shots and said something about how Jeff and I have three boys. Of course, he was right. We were there with three boys. But inwardly, in a way I suspect only a mother could really deeply feel, I had a sense of wrongness.

No, amiable island photographer, I don’t have three boys. I have four. I endured miserable pregnancies with each son. I gave painful birth and suffered through breastfeeding and lost all the sleep and carried their chubby baby bodies around everywhere for years, to the detriment of my sciatic nerve. I reordered my entire life to be their mother and raise them. And two months ago, I placed my second son in a group home, permanently, because I could no longer care for him due to the nature of his disabilities.

I do not have three children. I have four.

But if you don’t know me, or this blog, or our history, it looks like we are a family of five—four guys plus me.

There’s too much to say in this one post about all the things I felt and experienced over the last week of dream vacationing with my people. Especially because I’m still partially a bot and will be until I acclimate.

I will revisit all of it. But first, laundry. And sleep.

Mind Fog; Neglected Blog

This somewhat neglected blog has been on my mind—the same mind that struggles to hold a thought, but then occasionally grabs onto a disconcerting idea and clutches it with a death grip. That’s how my brain seems to be working as I continue the grief voyage.

Anyway, the blog. It’s kind of being ignored. Not intentionally, but I’m still trudging slowly and ineffectively along this prickly path. The daily living parts of my life are so much easier now, but emotionally I am dragging a great weight. I just don’t see any quick exit from this heavy process. I don’t think grief and healing work that way.

Yesterday after a day of church, my church calling responsibilities, and children/autism, I felt like I was going to crumble from exhaustion, breaking apart with a hiss of toxic steam.

Just living is wearing me out.

On the other hand, when I am busy with other things, I’m not worrying about Jack and I feel fairly calm. But when I check in on him and hear about the ongoing issues—the struggles that I am no longer able to help with—despondency and helplessness settle in.

People ask me how Jack is doing. We all want to hear that things in his new home are going perfectly, that the change has solved everything. But the reality is that he still has behavior problems and aggression at times (at this moment, much of the time). There is no such thing as a perfect day, behaviorwise, I am convinced. At least not until the resurrection.

The behavior issues remain. The change of setting didn’t eliminate them, at least not yet. The real, quantifiable change in Jack’s care is in the ongoing, rotating staff who stay and help for a shift, and who then leave the behaviors at work and go out to live the other parts of their lives. When they return, they are fresh and ready to engage with Jack again. For their efforts, I am utterly, unspeakably grateful.

When Jack lived at home, I did not have this luxury. Jeff and I had no break, nor were we able to focus our complete efforts solely on Jack. It simply wasn’t possible, nor sustainable. Hindsight tells me that we would have self-destructed if we had continued on as we were.

I can’t see Jack’s future. I don’t know how he will behave, going forward. I don’t know how he will do at his new school. I’m quite disconnected from the daily decisions and the constant troubleshooting that characterizes life as Jack’s caregiver.

I see this as the next step in facing my grief: this further letting go of Jack from my mother arms.

It has been such a raw test of my faith to turn Jack’s life over to his Heavenly Father. It hurts me. Even though I know what God wants for Jack because he has literally guided us to each successive step, I still struggle to accept it. I know God loves Jack and me and our family. I know Jesus is giving us strength. Knowing this, and coping with the everyday change of complete separation does not mean that the two are in perfect synchronicity, however.

I continue to hope that my faith in God’s plan for Jack and my acceptance of His will, somehow, eventually will be in perfect harmony.

Pleasant Surprises

My friend Ann is encouraging the practice of memoir writing among the population at large by posting regular writing prompts. I approve of this. Today, she encouraged all the people everywhere to write about a time they were pleasantly surprised.

Here are my thoughts.

Since Jack left our home, I’ve been on that oft-used metaphorical emotional roller-coaster. Some days are pretty good. Some days feel like my heart has been julienned. And then there was yesterday, when up until five pm, I felt happy, peaceful, content, but when I checked in on Jack via text, the rest of the night was a grief fest.

I’m not sure if it will ever feel right to me. Until we are all made whole in the next life and are unencumbered by disability, hardship, and sadness, I’m not sure that I will ever feel complete.

But, there have been some happy, unexpected things too.

  1. The ability to sleep late. It’s summertime. We are staying up late and, with no where to be early in the morning, we are sleeping in. Jack never slept in, which meant I never did either. But my other kids can putter around and entertain themselves for a bit in the morning while I slumber. This is an unimaginable luxury for someone who hasn’t slept late in roughly sixteen years.
  2. I am losing weight. Turns out stress is an excellent appetite suppressant. Grief has reordered my food cravings and my hunger cues. I still eat what I want, but I eat less. I’ve lost about twenty pounds, which feels like an okay accomplishment.
  3. I am no longer a ball of stress. Several people have remarked that I have a different energy about me now. I assume this is because I am not living a 24/7 fight or flight response. I can sit and have conversations with people without feeling antsy. I had forgotten that life can be peaceful. I am enjoying the ability to be calm and still.
  4. Jeff and I have the time and energy to focus on our other children. We are less testy, more patient. We are present for them. We can be spontaneous in a way that we never could before. It feels like freedom.
  5. Travel is suddenly a reality. We are preparing for a vacation with our sons that was out of the question for so long. I never thought it would ever be feasible. But here we are, after years and years of limitations, with a renewed vision of life playing out before us. I’m turning 40 in a few days, and I’m struck by the sense that life has various chapters that lead us to different, unexpected parts of our story. I find this exciting and rewarding.
  6. I’m so happy that Jack has kind, genuine people in his life still to care for him. They are a gift. I’m struck by the sense that God loves us enough to find us the help that we need. If it were up to me, I never would’ve found the good people in the small town who love Jack and take care of him now. But God knew who and what we needed, and he led us there.

Surprise.

Three Sentences That Turned Around The Worst Day Ever

I’m going to write about the type of mother I am, versus the type of mother I set out to be. But before we dive into the details, allow me to tell you a story about the Worst Day Ever.

Yesterday was that day, for no particular reason, other than it simply WAS. The Worst Day Ever. It started when I couldn’t sleep from five am on, until I dozed off around 6:50 and was promptly awakened by my alarm at 7:00. A grumpy kid snarled at me all morning. The entire family had to pile in the car early to be dropped off at my sister’s house for various logistical reasons.

The day in which I operated without enough sleep and with far too much sass from children continued. It was hot. The five-year-old had a couple of meltdowns, which isn’t unusual, but which was a sort of tipping point for me and my terrible, horrible, no good, very bad day.

I tried to take a nap. I got in about ten minutes before the phone woke me up.

By bedtime, I was a hot mess.

I was tormented by thoughts of a) what I set out to do as a mother, and b) what the story of motherhood has actually looked like for me. It was my life’s number one goal—motherhood! I wanted to do everything right. I took copious notes in my college child development, family life, and adolescent psychology classes. My teacher training classes lit a fire within me. I would be a mother whose children were PREPARED, who THRIVED ON BOOKS, whose BRAINS BENEFITTED from the early nurturing of a dedicated mother. I’ve written before about how I dove into parenting headfirst, and with great excitement. Gosh dangit, I was going to PARENT!

Thinking you are prepared and actually finding yourself truly prepared for the calamity of disabilities parenting are not the same thing.

I took fourteen years off work, during which time I (ironically) worked harder than I ever had at any job before or since mothering.

I wanted to be a good mom. I tried to be this. And then my particular children changed our trajectory. We weren’t typical. Our family experience was nothing like most people’s (if family life can be generalized at all. Who’s to say?) My children couldn’t be taught to read. One of them couldn’t even speak. Toilet training took YEARS UPON YEARS, for each child. We spent our money not on nicer furniture or family vacations, but on behavior therapy, respite babysitters, and replacement household fixtures and appliances that our children regularly broke.

Maybe this sounds rather jaded. But I don’t feel any resentment or regret for bringing each of my boys into the world, or for dedicating all my efforts to raising them for nearly fifteen years. In fact, now that Jack is no longer in my care, I am singularly grateful that I gave him everything I had while he was little and still living in our home.

The grief tsunami that hit last night came from a place of helplessness and tried to drown me in my own sense of inadequacy. I gave my everything to parenting Jack. But it wasn’t enough to “fix” the aggression, the destruction, the constant need for sensory input. I couldn’t parent away Jack’s need for constant, devoted care. He needed more than I could give, even though I was giving everything I had.

I tried, but I couldn’t keep Jack at home with our family. This is what haunted me throughout my bad day.

When I was pregnant with eldest son, I would watch episodes of A Baby Story while I folded laundry on the basement futon of our Sugarhouse home. One episode followed a youngish OBGYN (rather than following a particular mom preparing to give birth). It featured this doctor in several birth settings, helping deliver babies and offering genuine congratulations to their joyous parents. After one birth which took a turn from the uneventful to the unexpected, the doctor was filmed, saying, “Childbirth is a vulnerable time in a woman’s life, when often despite her best plans and efforts, she ultimately has little control over the process and the outcome.” He said this with great compassion and almost some regret, but with a sense of truth revealed by reality.

Now with 16 years of interim parenting experience, I think I could repeat this quote, substituting the word “childbirth” with “motherhood” to the same effect.

By the end of the episode, I saw why they had dedicated the show to this young obstetrician. He had recently been killed on a highway when he stopped to help a motorist in distress. The show contained footage of dozens of young moms and babies at his funeral.

I thought of this OB, whose story I saw only briefly many years ago, as I loathed the outcome of my parenting life with Jack. Now I can see a parallel between his story and mine. He labored enthusiastically at something, and he did it compassionately. But all of that was cut short. I raised Jack for thirteen arduous years, which I did wholeheartedly. But Jack’s disabilities and God’s plan for him changed everything, including my role in Jack’s life.

My sense of loss and the resulting shock waves of inadequacy at motherhood washed over me violently. This was the real cause of The Worst Day Ever. I was suffering because I couldn’t be the kind of mom who could do the impossible.

I spoke with one of Jack’s caregivers last week, and she told me what happened after I left Jack’s home following my emotional and difficult visit a couple of weeks ago.

She said he stood at the window and watched us drive away. He stood there and watched for a long time. Then he turned around and his expression, she struggled to describe to me, was confused. He looked as if he simply did not know what to do.

She told me this as a means of conveying that Jack remained calm and didn’t lose his temper of become violent—all positives. But hearing this as Jack’s mother, I was bereft. It was heartbreaking for me to imagine Jack in this state of confusion, perhaps feeling abandoned and unloved. I couldn’t undo Jack’s pain. My heart hurt for Jack, and I prayed telling God how sad this made me feel. It was a fervent prayer, through considerable tears.

I was driving as I said this prayer and I felt at that moment as though the Savior spoke gently into my left ear, saying three sentences that cut through my sorrow.

“I am with Jack,” I heard him say. “I know how he feels. I am helping him.”

Peace seeped through my mind and then progressively through the rest of me. I hadn’t even thought of Jesus being with Jack and comforting him. I have been relying on the Savior’s ministering to see me through this grief period, and he has unequivocally been the reason I can keep going. But I had not considered Jesus attending to my little nonverbal son, who can’t even ask for help—who can’t utter a prayer.

I’m blown away that the Savior of the whole world found it expedient to say three sentences to me as I drove and prayed.

I can’t effectively express my relief and gratitude at knowing that Jack is in his Savior’s care.

He’s taking care of me AND Jack.

He’s taking care of all of us when we are sad and lonely and overwhelmed and miserable. Even when we don’t know how to ask, Jesus knows what we need and rushes to help us.

I didn’t before understand this as concretely as I do now. It was a vivid lesson, a wave which pulsed over me with spiritual saturation because Jack had to move into a group home.

Jack’s care had to change. Because of this I know how deeply Jack and I need our Savior, and that he is with both of us.