Monthly Archives: November 2015

Living Demands Breaks. Period.

I’m going to rant about a post that I see circulating on Facebook.

If you don’t want to read it, I completely understand. Go in peace and eat some leftover pie.

So, the post features a picture of someone in the middle of a road winding through a lush forest in the Pacific Northwest. The caption, which people everywhere are loving, apparently, says something like this:

Stop planning vacations and make a life that you don’t need a vacation from.

I want to bounce a beach ball off that guy’s face and say, “Oooh, thanks for the brilliant advice! That’s a terrific idea! Just live a life that is so great and hardship-free that you never want to take a break from it! Maybe you should tell everyone in the whole world this great idea. We’re all such idiots! We shouldn’t need vacations from daily living! Life should be curated and authentic (can those words go together unironically?) and so generally perfect that we just do our thing day after day, stopping only to post edited images of our always-satisfying life’s work to the Instagram. This concept is rad!”

“We shouldn’t need beaches, or road trips, or national parks. We shouldn’t want vistas from mountains or a trip to a city to experience art and architecture and energy and something new. And we have only ourselves to blame if we yearn for these things while life ratchets up the crazy. Because it’s our job to create a beautiful life that is always vacation-y. Right on!”

Then maybe I would slow clap.

I am saying all of this as someone who almost never travels because of my children’s disabilities. Travel is hard for a family like mine. But because my family’s dynamic is always challenging, even at home, I especially understand the need to get away, to have a change of scenery and a little bit of space to breathe.

Even if they aren’t fancy (ours aren’t), vacations are important. Breaks are important. Because real people with real lives have actual problems that they can’t micromanage away to create a perma-vacation way of living.

*drops mic*

The Problem with Sugar-Coating Life: A Dissertation

Jeff had to work late tonight and Jack’s two helpers were both unavailable, which meant I was the lone woman in the house with the children when:

a) Truman screamed and cried about Nerf guns, toast, and bumping his hand on the furniture when he slapped it with rage.

b) Jack followed me downstairs and discovered my secret soda hiding place. It’s no longer secret.

c) Jack opened a soda and poured it all into the couch.

d) Jack ran out the front door, curled up on the cold porch, and refused to come in.

e) Jack lunged at me when I told him to come inside and did Crazy Tongue Face, so I put him in his room.

f) Jack peed under his door, into the hall.

g) Jack peed all over and around, but not in, the toilet before his bath.

h) I felt a fair amount of anger.

I keep thinking that Jack’s violent outbursts are building. Even when he has a mostly terrific day, there is still at least some aggression and destruction.

And so, beneath all of my anger roils fear. It’s the emotional undercurrent below all the other emotions. It’s hard to be zen about a situation that is perpetually difficult, with regular periods of violence/chaos/unhinged-ness thrown in.

I don’t have any conclusive answers about this situation. I have no sage wisdom culled from the daily war. I fear how much worse it will become. I don’t believe this is me being a pessimist who lacks in faith. This is me living my life as is actually is. I can’t sugar coat it.

I was telling the physical therapist about this as he did painful things to the muscles in my back yesterday. He asked about Jack, so I described the car tantrums, the biting, the smashing of household/classroom items, the punching, et al. The therapist said two things.

First, he said he respected me because he would really struggle with a family situation like mine. I was like, “I AM really struggling with it. Yep.”

Then when I didn’t immediately conclude the conversation with a loving epistle on Jack and why we adore him (keep in mind, he was brutalizing my back through all this), he asked, “But he’s a great kid and you still love him, right?”

I’ve noticed that this sort of thing happens quite a bit when people hear some of the more distasteful parts of life with a severely mentally disabled person; it’s an almost tangible sense of wanting me to instantly follow a description of our painful experiences with something that negates everything I’ve just described. It’s like they wish I would follow the bad stuff with a line like, “But it’s not really that hard and it’s all worth because he’s an angel here on earth.”

It happened at TJ Maxx the other day. The cashier and I were chatting as she rang me up. The topic of kids came up. My special-needs and all-boy family came up. I joked, saying something about how raising my particular kids is an insane way to live your life.

“But they’re really cute?” she asked. “They’re so great that none of that matters, right?”

How do you explain a home life like mine in 30 seconds? Perhaps people are sometimes so horrified by reality that it makes them uncomfortable hearing someone talking about it frankly, without tying it up in a sweetly saccharin bow at the end.

Of course I love my children. Of course I regret nothing with having each of them. But I cannot tell an honest tale of hardship and trial and then follow it with a “actually it’s really not that bad and everything is roses and my violent nonverbal kid is totally angelic and I love being a mom!”

I can’t do it, you guys. I cannot be glib about the bell jar that disabilities has placed over my life, sucking out the air and pressing down all around me.

If random people who I have conversations with in various public settings want to hear about my family, I will tell them, happily, what life is like for us. But it will be honest, and may be jaded by years of intense survival in caregiving.

We don’t expect war veterans and cancer patients to simply tell us what they love about combat or PTSD or being sick. But we want special-needs people to be fuzzy and adorable.

I think the world is more comfortable with the image of an angelic, sweet, smiling, and unobtrusive special-needs child.

Someone like Jack is harder to puzzle out and neatly embrace. He’s big. He lunges around unpredictably. He strips naked on a whim. He’ll violate your personal space, smelling your face or hair and taking things from your hands. He’ll scream and hit and bite when he is frustrated and angry. He throws and breaks things intentionally. He laughs afterward.

Is Jack an angel? He is a person stuck in a disabled body. Disabilities render him difficult to handle. He is a teenaged-sized eleven-year-old with the mind of a toddler. And he can’t speak.

I believe Jack’s spirit is angelic—valiant, pure, and good. Someday after all this mortality business he won’t be disabled anymore. He will talk to me and tell me all the things he ever wanted to say and it will be indescribable.

But right now, it’s hard.

  
 *happy Jack, waiting for the bus*

Tiny Letters, once again

Dear Saturday,

You really kicked my trash. Also, I really don’t like you. On another note, if you can help me come up with some kind of weekend-specific solution for Jack, that would be great.

 

Dear my back,

I am exercising the living daylights out of you, and yet, you still hurt so very much. Stop it right now, because I don’t have time for this.

 

Dear movie theatre,

You were far too overpopulated tonight, but I got to see Mockingjay with the hubs and my birthday teen, so I handled waiting in your giant lines for everything with aplomb. Sort of.

 

Dear fall,

You’re perfect. And fleeting.

 

Dear Jack,

Please be a good and happy boy for Thanksgiving. Please a) do not hurt anyone in the car en route to the cabin or b) refuse to wear shoes or a coat outside in the snow and cold. It’s all I ask.

 

Dear Thanksgiving,

I’m mulling you over. I’ve been shifting what I’m thankful for. It’s for experiences, like having a real-life angel save my life on the side of the road last spring.  Also, getting to teach college students about writing, which is the best. And being a mom to unusual children with a lot of life and personality among them.

I’m thankful I can work and raise children and write things and take the occasional afternoon nap.

Gluteal Amnesia

My back has been hurting for awhile. This makes me feel like I’m 87, which, for the record, I am not. After a couple months of trying different things to make it feel better, the doctor sent me to a physical therapist for the once over.

My PT, named Brian, figured out the problem and contorted my body in weird ways that stretched my back and magically made it feel markedly better. This was all well and good.

Then Brian showed me some exercises to improve my core strength. It’s been ignored far too long. So long, in fact, that some of my muscles are working overtime to compensate for other muscles that aren’t pulling their weight. I blame my children for this. My core liquefied in the service of bringing them into the world.

“It’s really common for people to get this,” Brian said, as I incorrectly did leg lifts on my stomach. “It’s called ‘gluteal amnesia’ and it happens when the glutes forget to fire and just kind of go to sleep, causing the muscles in the back to take over stabilizing the core.”

He said this with a completely straight face. That I had ‘gluteal amnesia.’ Because that’s an actual thing. And they named it that unironically.

Basically, my bum muscles forgot who they are and what they stand for. They had one job.

Like a soap opera plot twist, they’re acting like they’ve been hit over the head and have woken up in a hospital, confused and listless—a tush with a forgotten identity and nary a clue. These glutes were made for walking, but they currently prefer lazing around, making other muscles pick up the slack.

My real-life daytime drama is amnesia of the bum.

The post where I talk about Jesus

When I was twenty-five, I went to a meeting where Chieko Okazaki spoke. I don’t remember what she said that day, except for one thing.

She said, “There are more miracles than we realize happening in our lives every day. If we are aware, we will see them.”

I had one little baby at the time and he was basically perfect. My life was humming along fairly seamlessly, and I remember thinking to myself, “Yes, miracles. Miracles are the things that happen to ensure our lives go well. Miracles mean that disasters are averted, that we will be protected from terrible things if we only keep the commandments.”

This was my inner dialogue as I listened to Chieko speak, and I wanted my life to be filled with miracles, keeping me safeguarded from tragedy.

Which is, frankly, a stupid notion.

The next year I had Jack, who as you know, has a rare syndrome whose hallmark is severe cognitive delay. He also has autism. This is when I began to learn about the actual definition of a miracle.

When we had Jack and things started getting really difficult, I no longer felt like the world was my oyster. I started realizing that no matter how hard I tried to parent my disabled son, I would never be enough. That’s the thing about disabilities–visible or invisible. They are bigger than we are, and they generally stick around for the duration.

I realize I’m not alone in feeling inadequate. Inadequacy isn’t a special-needs mom condition. It’s a human condition. We come to earth to learn and grow, which means we are separate from our Heavenly Father. I believe we miss feeling whole, as we must when in the presence of God. Feeling “not enough” is a pretty normal way to feel in mortality.

So we come to earth and experience growth. This sounds terrific on a general level, but more specifically, it looks like being deeply challenged. Like spinning our wheels. Like trying but failing to reach goals. Like discouragement. Like fear. Like anxiety.
I spent a lot of years feeling inadequate as a mom. I wasn’t smart enough/patient enough/consistent enough to change my son and make things better. And, I thought God wanted me to figure it out myself.

Over many years of living in this crucible, my thinking changed.

I stopped praying for things to get better. I started praying for the energy to keep trying. I started praying for wisdom to know how to approach my challenges.

I hung on to the concepts of Helaman 5:12 “Remember that is is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.”

I reached a point a couple of years ago where things were getting progressively harder with Jack, always more difficult. I felt like I had reached an enormous brick wall blocking my path, the kind I had figuratively climbed hundreds of times in Jack’s lifetime. But I had nothing left in me. I could not climb it.

I was driving one rainy night by myself and praying. I asked God to step in. I told Him it was time. We needed his help. We held a fast with our extended family. We prayed.

I had the weird sense that I was like a horse, harnessed and head-down pulling a wagon with a heavy load up a never-ending hill, and I couldn’t keep doing it. My friend Shirley taught a Relief Society lesson awhile back where she brought a picture of two horses yoked together, pulling a wagon. I just stared at that image all through the lesson and in my mind, heard the scripture from Matthew 11 that says, “For my yoke is easy, and my burden is light.”

Things started to change that spring. Jack suddenly qualified for disability services, something I had applied for six years earlier and never expected to get as the wait list is enormous. Jeff and I got to take a vacation, without children. I went to yoga and while attempting to plank, felt the Spirit say that raising my particular children was hard, but I was doing it. I could do it.

It felt like, in the midst of pulling this heavy load, I looked to my side and realized that I wasn’t pulling the load by myself. Jesus Christ was pulling it too, we were yoked together and He was stronger than I was.

I have a dear friend in my writing group, whose name is Beck. She is smart, funny, kind, and has a completely radiant testimony. Her faith is strong and absolutely inspires me. Beck has some big challenges in her life. Big, never-ending challenges. Sometimes she has amazing dreams that are really spiritually charged. She told me about one particular dream.

Beck was sitting in the center of a large university auditorium, with rows of chairs raised like an amphitheater in front of a lecture platform. The chairs were full of students, and she saw the teacher over her right shoulder. He was dressed in tweeds with leather patches on the elbows–very academic looking. He walked down the stairs to the podium and as she looked at him, she knew it was Satan. He began to speak, telling the class that Jesus Christ was not real. He was using all sorts of arguments to convince the students that there was no such thing as the Savior.

Beck sat listening and was filled with horror, thinking, “All of these people are going to believe Satan. I need to say something. I have to tell them that Jesus Christ is real. I have to.” So she took a deep, shaky breath and started to stand up.

As she stood, the person to her left also stood. She looked to her side and it was the Savior standing beside her. She said he was dressed in regular current-day clothes but she knew it was Him. She thought, “Okay, we are doing this together.” And she told the auditorium that she knew Jesus was real and He is the Savior.

Beck’s dream and my personal image of the Savior pulling a heavy wagon loaded with my troubles have been so moving to me. These images have helped me process that even when I feel alone, I am not alone.

I recently was having a really rotten day where several people who work with Jack lost their tempers and said things that hurt me. I thought, “These are people who work in the field of special needs, and even they do not understand what it’s like. No one understands.”

I was thinking this and a thought pierced my thoughts. “Jesus does. He knows.”

Let me tell you a story about last winter. At Christmastime, Jack went off the rails. He became entirely aggressive and unpredictable. He also went through hormonal changes and a growth spurt where he gained twenty pounds and a few inches in height, so that really helped matters. He started attacking people in the car while we were driving places, including me when I was driving and the only adult in the car.

Over Christmas Break last year his behavior was so severe, that we could only keep our family safe by putting him in his room and locking the door, where he would pound his head on the floor. We resorted to taking him to the university’s neuropsychiatric hospital to see if he could be admitted and they could offer us some form of help from the devastation we were experiencing.

They did not admit him, for various reasons, but sent us home and told us to keep doing what we were doing—keeping him close to home and using his room as a safe space for him to de-escalate. It was taxing and exhausting. And sad.

So, this is when I talk about miracles again. Last winter was awful. It was painful to see Jack in such a state and not be able to help him. It was painful to see how Jack’s issues were weighing down my whole family. It was exquisitely painful to not be able to reach my son, who was so distraught that he would hurt people and then bang his head on the floor in frustration.

It doesn’t sound logical, but in this winter of sadness and difficulty, I learned about miracles.

Some of the miracles in my life are:

*That long-term suffering has not killed us. It has taught us to turn to God and eschew worldly things.

*That we have a Savior, and because of Him, all this is temporary. We can return to God and be whole again.

*That Jesus absorbed all the world’s sadnesses, wrongs, and despair. He knows exactly how we feel.

*That we can keep going with hope and peace even when the worst case scenario happens. Even when it is counterintuitive for us to be grateful or peaceful, we can be. Even when we are caught up in a whirlwind of disaster, we are not alone because our Savior is beside us.

The miracle for us is that we can keep going, even when it’s desolate. Jesus is at our side, standing with us.

Jack is a miracle in my life, not a tragedy. He has shown me that Jesus is at my side.

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November

My luck has held for the eleven weeks that school has been in session. I haven’t gotten sick.

Until now.

It was inevitable and I’m accepting it. So I am listening to Christmas songs (don’t care, Grinches) wrapped in a quilt, popping ibuprofen, grading papers, and kissing the four-year-old who keeps climbing into my lap. November is my favorite because it gives credence to sitting around with mugs of hot cocoa and chunky wool socks because, dude, it is blustery and cold out.

November is when fall is fading and winter still seems exciting.

My baby, who, incidentally, we call Baby, turned four yesterday, which meant there was cake for the family and cupcakes for the preschool class. It also meant that there was cake and frosting all over my house. My boys are united in their jubilation over cake. They are my children, for sure.

This week I am feeling:

  1. Grateful that Baby lived four years ago through his premature delivery and ambulance transfer to a bigger hospital and life in the NICU for his first month on earth. I am so glad he is here, a spot of bright sunshine in our family.
  2. Glad I am not one day postpartum after the pregnancy from heck. So. Very. Glad.
  3. Happy that Jack is happy of late. When Jack is happy, everybody’s happy.
  4. Like my throat is on fire and my body is one big ache, swathed in sweats.
  5. That people need to take sick days when they are sick, instead of pushing through and going to work or school. They think they are being brave and good, but really they are infecting the rest of the world and keeping themselves from the rest they need to get better.
  6. Loved. Two of my neighbors (one a long-time friend and one I don’t know well) brought me a box of fresh doughnuts and a homemade raspberry pie this week, respectively. People are kind and amazing and I love them.
  7. Thankful. Generally, for everything. All of it. Jeff. Books. Friends. Naps. Cool weather and a cozy house. My unique children. That sometimes, for a few minutes, we get a handle on the disabilities and life hums along in a pretty okay sort of way.

Mmmm, November. Yes. I approve.