Monthly Archives: March 2018

Elastic

It was exactly one year ago that Jack’s new life plan was set into motion. General Conference weekend last April I had NO INKLING WHATSOEVER that our lives would change so drastically and so quickly, literally beginning just days after conference.

I’ve been thinking of all the things that are different about life now versus life then, as well as the lessons I’ve learned. Of course, I will soon expostulate on this, as one does. But first, allow me to discuss a photograph (the one above).

I have this picture beside my bathroom sink of Jack at eighteen months old, sitting beside three-year-old Henry. I had it taken at Target’s photo studio a dozen years ago one fall day. Jack’s hair is big: curly, gingery, soft, shiny. He has a soft little baby face and a wet mouth that is half smiling, half ready to wail. He’s so little.

I look at this picture every time I brush my teeth. In it, I see the passage of time, skipping over a dozen years in a moment. I feel as though I see Jack’s innocence and sweetness in those pillow-y baby cheeks.

He has the same soul today as he had then.

As the years fall away, so does my anxiety, my inadequacy, my struggle against the repetitive pulling tides of difficulty. But at one point in my journey as Jack’s mother, I couldn’t see his limitations for what they are—an orderly, intentional plan for his life. Purposeful. Deliberate. A gift. I only saw the loss.

Because of what has transpired in the last year, I don’t see loss anymore. It’s not a void, it’s a fullness. My spirit feels educated.

When I see Baby Jack smiling and sitting by his big brother, I see life. It’s a big life. Sometimes it feels restrictive, clamped down by hardship. But Jack’s pure freckled face with the milky skin shows me expansiveness. It is growth. It is learning through experiencing.

Because I have Jack, I am closer to God. This isn’t because of anything I have done. It’s because Jack’s condition has leveled me, humbling and bringing me to a point of meekness, by which I mean a place of deep yearning for God’s power in my life.

With time, I’ve shed the old mental image of the ideal life I had constructed in my mind. Hard things that I couldn’t manage alone compelled me to ask God what He had in mind for Jack and for me. “Tell me what to do, and I will do it.” If anyone ever had a prayer on repeat, this was mine. It still is.

Jack’s face has morphed a great deal in the last year. The tiny face in the photograph is now that of a big, burly teen. His face, our lives, they evolve.

The content of his spirit is as vibrant and valiant as ever. But my spirit has changed. It’s softer. Elastic. It is no longer enclosed like a fist, but open, like an outstretched hand.

It is receptive to change. It anticipates growth.

 

Jacky is Sweet

Jeff and I spent 75 minutes on the phone this morning for Jack’s intake meeting with his new service provider.

This is where we tell them stuff—like that Jack adores vacuums and going for rides in the car, and that he straight up cannot handle crowded, noisy places, particularly which involve waiting in line (Someday I will tell you about the time I took Jack to Disneyland, for real. And we lived. I know.) We mention things at these meetings like “you will need to put up plywood on his bedroom walls so he doesn’t kick holes in the drywall and constantly pick at it.” And “Jack does great with big burly male staff, also watch ya noses (!) because his big hard head has been known to bash into them at times.”

You know, your basic info.

What goals do we have for Jack’s behavior? When they asked us this, Jeff mentioned getting him to wear shoes. I just wanted to say, “not hurting people or things.” Is it a tall order? Perhaps.

I felt one hundred percent calm and peaceful during this meeting. I have continued to feel settled and happy about Jack’s upcoming move to his new placement.

We told them all about the bad behaviors. We also told them how cute he is, and sweet, and purely loveable. Our support coordinator mentioned that he visited Jack this week and talked to a female staffer at his current home who has taken the brunt of Jack’s aggressive behavior, of late. During their conversation, she cried, saying she will simply miss him. This is a woman who could be glad to be rid of Jack and his behaviors. Instead, she was emotional, thinking of the real Jack—the person he is inside, who she loves.

Here is the thing: everyone loves Jack. Everyone who really knows him, loves him. He is so darling and precious, goofy and loving.

Everyone says such things about their own child, as they should. But Jack is FOR REAL darling and precious, in spite of those pesky behaviors.

He is TOTALLY goofy and loving, despite being nonverbal and developmentally delayed and frustrated.

Jacky is sweet. He is all bony elbows and giant feet and freckles and red hair and blue-green eyes and sweetness.

He is good, even when his behavior isn’t.

Jack is perfectly himself and I cherish all of him.

The Next Right Step

  1. I can eat again.
  2. It’s Jeff’s birthday and we get to have a night out, so yay us.
  3. Physical therapy is making me huuuuuurt.
  4. I am now one of those people who complains about sore body parts.
  5. And talks about exercise all the time, gah.
  6. I’ve been on the phone with the support coordinator lots in the past week.
  7. We have discussed and then discussed some more, all the options for Jack.
  8. There were four responses to his call for service, meaning the search to find a new service provider for Jack’s needs; three aren’t the right fit for him. He would not succeed in those scenarios.
  9. The fourth, in the southern part of the state, is the only viable option.
  10. I have prayed a lot that the fourth option would be approved.
  11. Like, a lot.
  12. Muchos prayers.
  13. Many people have suggested we look into the state developmental center.
  14. A few things to know about this option: a) We are aware of it and feel it is ideal for Jack, however b) it’s kind of impossible to get into until you’ve exhausted all other options and are c) preferably not a minor. I personally believe Jack will live there someday and it will provide the care he needs for a long time. But today is not that day. And we need something else now.
  15. Other people have said they thought Jack’s current placement was meant to be and they couldn’t believe it wasn’t working now. We do believe it was the right first step for getting Jack into residential care. But it’s not the last stop for him. His needs are evolving and incredibly intense.
  16. Sometimes people will comment about the endlessness of Jack’s ongoing issues, like in a caring, sympathetic way. I’ve found that this doesn’t make me feel sorrowful or persecuted as it once did. Instead I’ve learned that now I see Jack’s care not as something to solve, but as a process which will continue and require faith and major problem-solving skills for the duration of his life.
  17. I guess I see the challenges as a series of steps we are taking. It’s a path of stepping-stones and they lead waaaay into the distance.
  18. Another realization: I don’t feel sad and exhausted about this, as in years past.
  19. Which is really great, huzzah!
  20. While I graded papers by the fire this morning, the support coordinator called with this news: Jack has been approved for the facility down south.
  21. Miracles happen. For real.
  22. THIS IS A MIRACLE.
  23. God loves Jack and knows what he needs.
  24. I reflected and realized that I never doubted that God would present us with a plan.
  25. I did, however, fear that the next step would be difficult to swallow. And swallowing has literally made me gag, of late.
  26. Which maybe does mean that I actually am a tad fearful of the length and difficulty of that stepping-stone path, the one that represents Jack’s life.
  27. And I had a stress dream wherein I went to class (the one I teach) an hour late and couldn’t remember anyone’s name. Also, I had no lesson plan and I couldn’t make the computer or projector work. So there’s that.
  28. But back to the stepping-stones. Through this tumultuous process, I’ve learned that because this is mortality, there is no final solution.
  29. There is no arrival at the right place with enduring perfection and happily ever after.
  30. There is only the next right step.

Books, Babe

Wherein I offer *tiny* book reviews of works I have recently read.

Books set in war time:

Beneath a Scarlet Sky by Mark Sullivan. Wow. WWII in Milan. True Story. Going to be made into a movie. They kind of were the greatest generation.

The Girl You Left Behind by Jojo Moyes. Set during the Great War in France and written by the author of Me Before You. Like all war stories, this was so very sad. Good, but hard too.

YA Realism:

The Sun is Also a Star by Nicola Yoon. This is one of the best YA books I’ve read in recent years. Natasha and Daniel are two teens in New York City facing deportation and lots of family issues, all while trying to establish their own independence. This novel gives credence to the concept that everyone in the world has a story and that we are all connected to each other as humans. It is beautiful.

Far From the Tree by Robin Benway. This is a National Book Award Winner filled with teen characters that I completely loved. The adult characters weren’t as fully-realized. It’s about three biological siblings who find each other as teenagers. None has a perfect life, but their sense of family and identify grow and evolve in an inspiring way. Salty language warning.

YA Fantasy:

The Queen’s Gambit Trilogy by Beth Brower. Super addictive. A sweeping world-building series. Kind of like Game of Thrones, but without dragons and with a PG rating. I raced through these books and instantly wanted more.

Blood Rose Rebellion by Rosalyn Eves. This novel by a fellow Segullah sister (!) begins in Victorian London, where magic is the primary force by which people achieve status and wield power. Much of the book takes place in Hungary, and is a layered tale which explores the roles of innate gifts, choice, and social strata in determining the outcome of one’s life.

The Hazel Wood by Melissa Albert. Super creepy and creative horror story. The first two thirds of the book are terrifying and amazing; the last third kind of goes off the rails. Quite weird. The fairy tales in this story are real and uber dark. Again, beware the salty language.

Memoir:

Educated by Tara Westover. I am obsessed with this book. The author was raised in Idaho by survivalist, extremist Mormon parents. She had no birth certificate and never attended school. With mental illness and abuse as foundational pillars of her childhood home life, she nevertheless taught herself enough math to pass the ACT with a 28, which was sufficient to be accepted to BYU. Ultimately, she earned graduate degrees at Cambridge University and a fellowship at Harvard. Horrifying, inspiring, and BEAUTIFULLY written.

Classic:

Wuthering Heights by Emily Bronte. This is my second time reading this, one of the most well-regarded books in the English language. I figured because I loathed it the first time through all those years ago, it deserved another look. You’re probably already familiar with the story, but if not, allow me to toss a few descriptors at you: DARK, STORMY, SAD, MELANCHOLY, WIND-SWEPT, DEPRESSING. The skill with which this story is told as a tale within a tale (practically within another tale) is stunning, and the language is, well, remarkable. The Brontes WERE geniuses, you guys. And the fact that Emily died at age 30 after WH‘s publication makes her masterpiece even more tragic. I’m glad I read it, but Jane Eyre by sister Charlotte is still the best book ever. Feel free to disagree, but you will never change my mind.

What are you reading?

Angels Speak

The nausea started as soon as I got the call a week ago Monday. Jack had attacked a number of people at school, including a kindergartener, and had been taken by the police to juvenile detention.

It persisted through each follow-up phone call over the next week:

*the group home, apologizing as they said they can no long care for Jack

*the manifest meeting with the school team, where his teachers cried as they said they love Jack, but he is suspended from school (with at-home instruction of a teacher) for 45 days, or until we figure out a more appropriate education setting

*the Child Protective Services guy, who said someone (I know who) made a case for Jack being neglected (he’s not; what he is, is difficult to care for)

*the county court clerk, who called us about the charges the kindergartener’s parents are bringing against Jack; which, following a psychological evaluation, will be thrown out, but will prove to the state that Jack needs greater levels of funding for more intensive care

*the neuropsychiatric hospital, reinforcing that they don’t have room for Jack to be admitted

*one of the other group home providers, wanting to know the extent of Jack’s aggression before determining if they can take him into their care.

Things are in limbo as we decide what’s next for Jack. This moment does not come as a surprise to us. Since Jack was in the hospital during the month of December, Jeff and I knew his current placement would not last, despite everyone’s best efforts. He needed a change, and the recent behavior incidents have forced the issue.

But still, the nausea. Even when I truly believe God is driving the bus of Jack’s life, I can’t see just exactly how the future will unfold. I’m queasy and struggling to eat. And sleepless in the wee hours of the morning.

Also, my back and shoulders hurt, because they just do. At my physical therapy appointment this week, I stopped halfway through the exercises and said if I kept going, I was going to throw up. The PT and the assistant were sweet and concerned as they made me sit down, bustling around me with ice, pillows, and water. They told me to ease off on the frequency and intensity of my exercise routine while my life is in turmoil. And they massaged the knots out of my back before sending me on my way with their best wishes.

I feel moderately peaceful, at least on the surface, but my abdomen is telling me that subconsciously, there is a substantial level of worry which persists.

In the meantime, I’m teaching and grading, Henry had his first prom, and Charlie had his 10th birthday. Because life doesn’t stop for one kid and his uber extensive needs.

Reader, the crux of the nausea is this: my anguish has been tied up in the unknowns of Jack’s suffering.

He is lashing out. Is he miserable? He is aggressive. Is he in pain? He can’t speak. How deep is his frustration and suffering?

I’ve curled into a literal and figurative ball around this torment as I’ve worried about Jack.

Until.

Last week, my neighbor called, saying she needed to come see me.

I don’t know her well. She barely knows me. She was insistent. I said okay. We sat down in my living room late Friday night and this is what she said:

“I was told to come talk to you.”

“By who?” I asked.

“Jack.” she said, never breaking eye contact. “Jack came to me and told me to speak to you and tell you he is FINE.” She emphasized this word.

My initial response was complete disbelief, reinforced by all the reasons why this could not be. Yet, even as that thought materialized in my mind, an outside source pressed instantaneously and deeply into my psyche, overpowering my skepticism. It was a profound whisper that said, “This happened. Believe her.”

Warmth flowed through my arms and chest.

She proceeded to tell me that her whole life, she has experienced spirit-to-spirit communication with people who haven’t been born yet, who have died, who are in comas, and (apparently) who are disabled. It took her years to understand this for what it is–a spiritual gift which isn’t for her benefit, but to help people around her. She doesn’t talk about it, because you know. Awkward.

It happens when she’s sleeping and in a dream state. But, years of this have taught her, she’s not dreaming. She’s seeing people’s spirits. She doesn’t know them, but they come to her spirit because she knows someone who knows them. She wakes up and writes down whatever she saw, for accuracy.

She told me that Monday night of that week as she was sleeping, she saw Jack and he spoke to her without using words.

She didn’t at this point know that Monday was the day Jack lost his mind and went crazy at school.

We looked at each other, blinking.

“What did he look like?” I wanted to know.

She shrugged, “Like himself.” He looked like he currently looks. “But,” she continued, “He isn’t disabled. His spirit is NOT disabled. He is …” she paused, “remarkable.”

She proceeded to say that Jack told her to talk to me and tell me he is okay, that his spirit is not suffering. He wanted me to know that despite the chaotic events, he is fine.

My neighbor looked at me and nodded. Then she smiled softly.

It’s not really possible for me to verbalize the emotional relief I experienced at this moment. The tears spilled down my cheeks, the tension in my shoulders ebbed, the writhing pit of anguish in my belly disappeared.

Jack is not suffering.

Jack is inwardly at peace.

The things that are happening around him are simply things.

But Jack, my Jacky, is FINE.

There was an exquisite silence as I processed this.

After a time, I inhaled and exhaled. I told my neighbor that when Jeff and Peter gave Jack a blessing Tuesday night after the children’s hospital ER and before we returned him to his group home, I’d had a distinct impression as soon as Jeff started speaking. I heard a voice in my head say, “Jack is filling the measure of his creation.”

This gave me pause. “Filling the measure of one’s creation” is a phrase in my faith that we sometimes associate with animals in mortality. I salted it away and determined to think more on it. I did not yet understand.

My neighbor said, “I don’t have words to explain things, other than describing what I see. What I observed is that there is some level of separation between Jack–his body and his spirit.”

Whereas you and I are all in, so to speak–fully immersed in our physical bodies, she saw that Jack seems to be somewhat separate.

“It’s like he is watching himself on a movie,” she described.

He is filling the measure of his creation.

This phrase which had blasted into my brain during the healing blessing suddenly made sense to me.

His body is filling the measure of its creation. He was born and he is living, going through the experiences of his life. But Jack’s spirit is not trapped or imprisoned or in perpetual anguish, as I feared. His body is growing and eating and often hitting or biting people. But his spirit is…fine.

His spirit is beyond fine.

My torment is gone, replaced by the empty fullness of relief.

This is how I know, dear reader, that peace is real in impossible situations. Jesus carries the sorrow for us, while sending actual relief from anguish.

I just re-read in 2nd Nephi that “Angels speak by the power of the Holy Ghost.” They straight up do. This is real to me. Even in the depths of the pit, God sends people to be with me.

Before she left, my neighbor said, “Jack isn’t just here for you. He is here to teach many people many things.”

This is the part that profoundly affected Jeff when I recounted the conversation after she left. He and I have always known this about Jack. But the fact that she said it was a confirmation of both Jack’s purpose and ours as his parents.

He is an eternal being. So are we. My dad is, too, though he’s currently separate from us.

I feel as though if I work toward it, God will lift off the top of my head and send a pillar of light to fill it with more understanding.

We are Family

I gave my writing students the following prompt this week: Write about someone who has had a profound impact on your life.

I wrote while they wrote, and this is the result.

(For context, as I was writing and teaching this, Jack was en route from his rural town to the children’s hospital, following a week of heinous behavior which included being taken to DT in a police car and having charges brought against him for smacking a small child at school. See fb or Instagram if you want to know more. *Hint, you don’t want to know more.)

*Ahem* (clears throat).

Jack has had a profound impact on me.

From him, I understand more about humility, fear, the depth of love, lack of control, true hardship, true bonding, perseverance, acceptance, violence, hurt, seeing past people’s flaws, seeing people’s true selves, and hope.

Definitely hope.

I am harder now—in the sense that I don’t waste time worrying about certain things or what people are thinking about me.

I’m softer in the sense that I can empathize with people in their struggle, whatever that struggle looks like.

I’m sadder, because I’ve been to the depths and back.

I’m happier, because I’ve been to the depths and back.

I appreciate variations more, meaning I value calm, boredom, excitement, novelty, spontaneity, and routine. When there is freedom to be different and experience difference, there is beauty in life. The opposite of this feeling is bondage, and it restricted my life and spirit for years.

In the past week, I have experienced a strange vacillation, of swinging between a) feeling like the issues with Jack are never-ending, to b) feeling an encompassing sense of “normalcy” in the chaos. It just doesn’t seem surprising anymore, nor entirely overwhelming (she said, ironically, as she wrote in the quiet of the university library on a sunny morning, after a decent night’s sleep).

Yesterday was a different story. Following two nights of subpar sleep, compounded by the emotional free-fall of Jack’s awful week, I was the very definition of overwhelmed.

Today is a new day.

Anyway, normalcy.

I’m just not super shocked by the things that happen anymore. It’s basically life with Jack in it.

At the same time, when people announce their pregnancies on social media, I straight up feel nauseous on their behalf. This is not hyperbole. I see the possible beginning of a burden-filled, soul-taxing journey in the name of raising children. Because of the wild nature of my parenting experience, I know what could happen, and it makes me entirely jaded.

Child-raising, it turns out, is my Everest.

While I know in some subconscious place that not all people will face a parenting battlefield like mine, I see the potential for disabilities, for extreme hardship. I don’t see it as something that happens to other people. I see it as a reality, even an inevitability.

I’ve wondered if my life as a mom of children with special needs has made me more fearful. It’s certainly led me through fear. But I’ve been doing this long enough that I can see how the process works. My family has also pushed me past those murky swamps and on to acceptance, growth, and understanding.

While I’m utterly exhausted and sometimes filled with rage at the strenuousness and the endlessness of disabilities parenting, I am simultaneously glad that my children are mine. That their struggles are my struggles. That we are doing life together.

They are mine. I help them. They teach me. We love each other.

We are family.

 

We Got Away

We have gotten away.

The five of us are AWAY for a long weekend in St. George, where it’s warm and sunny. This is what I’ve dreamed of since my dad went on hospice in October. Getting away.

Victory.

It’s wild to me how a simple change of scenery can shift everything. No snow. No obligations. No people. Nowhere to be. Angst begone.

The five of us doing what we want to do. We brought two gaming systems with us for the boys. There is plenty of lounging around. The pleasantness of sitting outside in the warmth is luxurious.

I’m meeting my dear friend, Lacey, for lunch tomorrow. She moved here last year with her family in order to help her special-needs daughter better cope with the winter months. She took the photo at the top of this blog and is one of those people with an eye for making basically everything beautiful. When we come to St. Geezy, I dream of having her take a current family photo. Then the gloom sets in, because Jack can’t travel with us. Will we ever have the opportunity for a photo shoot with the entire family?

These are the dumb things that plague me.

Meanwhile, we are here, though Jack is not. It is a beautiful place and I’m hopeful for spring and rebirth after a winter of sadness. And I brought three books, so yay.

The little boys want to swim at all times, and Jeff is taking me for tacos tonight at that place we like.

Thank you, God, for this blissful moment.