Weird Science Indeed

I'm confused.

Please Note:

This entry was written by Past Erik. Not Present Erik. It was written at the exact moment of its occurrence, so it's in first person. In other words, it's not happening right now, though it did at the time, so I wrote it right then.

So let's listen to Past Erik from Saturday, May 3rd, 2014, shall we?




I am currently writing a longer post (found here), one that has taken a long time to refine. I am at the computer and Miriam is in her wheelchair next to me. 

The communication device, attached to her chair, scrolls through various choices. Miriam feels the need to choose everything negative.

I'm bored.

Entertain me!

Something hurts.

I want to lay down.

"Sorry," I said. "You need to stay in your chair right now. You've been in your bed all morning watching cartoons."

No.

"What?" I respond with an exaggerated loud voice. "Are you being sassy with me?"

That is scary.

"Sorry," I say, dialing it down with exaggerated shame. "I was just teasing."

She says a few random things for a while as I continue to write, though I respond as if she meant to say them. Sometimes she likes to use the switch to rest her head. 

After a few minutes, she clicks:

Listen to music.

"Listen to music?" I ask. "Sounds good."

I start up the 80s library on iTunes. Weird Science starts playing.

What is that?

Before Tim Burton came along.

"Oingo Boingo," say. "Danny Elfman. He's great."

After a few minutes, she adds: 

Sing a song.

I start being silly, singing along. She starts laughing and yelling.

That's my favorite.

I sing a lot to her, mostly silly songs I make up as we get ready for bed. She always enjoys it, and Dad does too, because after a long day at work it's often the only time I have with her. I hate being away; sometimes it takes her time to process who I am if I don't see her for a while. She'd rather look at her caregiver, which can be disheartening.

No issues with that today. I am singing in a goofy voice, pretending to play the guitar, clapping. She laughs and screams and laughs again. Nobody else is home, so we can shout and be crazy and enjoy each other's company.

I feel. Happy.

I pause. 

I've never heard her say that before.

"So am I," I reply.

Dance, Daffy. DANCE!

I was asking my brilliant wife about her day.

"How was your day?" I asked.

"Just fine," she said wearily.

"What did you do?" I ask, as if she was just standing around doing nothing.

"I took Miriam to physical therapy," she replies. "That's the one up North, about sixty miles. Then we were off to two appointments at Children's Hospital. Then we had another fitting at the wheelchair company, because the wheel fell off and killed a cat."

I listen intently, yet I'm busy worrying if I look too fat in my slacks.

To illustrate how SHE probably feels, click this video and scroll to the 1:25 minute mark. 

Considering this, I did some thinking.

As a parent of a child with special needs, I harbor a deep, deep secret. It's one I suspect is held by many people who have gone through some kind of personal tragedy, though I'll not presume this to be a fact. Though I think it might be.

To understand this secret, I offer you a tantalizing clue:

Can you guess?

Sometimes I feel as if we have it worse than other people.

Ridiculous! you say.

But my daughter will never walk, I reply. We had a healthy daughter in utero who, through a series of tragic events, suffered birth trauma that led to her disability.

That sounds pretty tough, you might reply.

Trust me. This fits.

This led to unsettling truths, I continue. Truths about a darker side to the medical and insurance industries.

Really? you ask.

Deep inside you wonder if my interest in shadowy intrigue came because I just saw the latest Captain America movie.

Probably. 

This led to a legal battle, I continue, where a court of law validated our concerns. 

Fascinating.

It took over a decade, I add, thinking that might shock you.

Interesting.

During this time, my father died.

Ouch, you say, grimacing.

And my father-in-law.

Oh no.

And I lost my job.

Yikes.

Though we finally settled our case.

Wonderful, you say. Footprints in the sand, yada, yada, yada.

Now you're just mocking me.

No, seriously, you say. It all sounds so very…well, difficult.

Of course! I say, feeling emotional. Can't you see how much I've suffered?

You nod knowingly.

It sure looks that way, you say, looking at the exit. But I have to go. My daughter has leukemia, and she's been living at the hospital for the last two years.

And I stand there. I shake my head with genuine concern. Deep inside, however, I think: 

At least she can walk!

Sigh.

I should be ashamed of myself, and I am. There are many, many, many people who suffer far worse than us. There are many, many, many, many people who have it much better. It depends on your criteria.

To provide perspective, I invite you to visit this awesome website. (Click on the title below to view it; it uses Flash, so some mobile devices may not be able to display it.)

SCALE of the UNIVERSE

Do you see the analogy here?

We cannot really compare anything, really, because the very smallest is as amazing and terrible as the very largest. A star can complain because it's about to go supernova, on the very day an elephant lies dying next to a bug that was just squished.

What private sufferings exist in all of us? So myself and my daughter and my wife hustle and bustle and cry and worry and lose hair and go grey and lose sleep and pray and pray and pray and it's so easy to forget that yes, we suffer but yes, we are also blessed. We all are.

My daughter is loved.

So am I.

So keep dancing, my love. So the applause is quiet and the crickets are loud, and your husband can be a selfish, self-centered brat. Yet the blessings are all around us.

Can we see them?

Here are five of them.

Here are at least three.

I see four here.

Yep. Here are a few more.

And here.

This one is awesome.

Here is the best one.

Do you see them?

Yep, It's Like That. Kinda.

Someone asked once, in regards to raising a severely disabled child: 

How do you do this? What is it like?

This is what I might say.

Some days feel like this.















Other days feel like this.

On more difficult days, 
it can feel like this.

As the Dad, I feel I have to be like this:

Yet I realize it's more like this:

For someone like this.

Because this is that someone.

And this.

And this.

Because she treats people like this.

Loves her brother like this.

Treats the world like this.

Even when she deals with this.

And Mom and Dad try to be like this.

But we feel exactly like this.

And this.

So we rely on this.

And the promises we received when we were married in this.

I'm going to get spiritual here, and specifically religious - so if that offends you, please repent and give God a big 'ol apology.

I am a member of The Church of Jesus Christ of Latter-day Saints (aka Mormon). You can find my "I'm a Mormon" profile HERE.

When people ask, How can you do this? Here are a few reasons why I feel we can.

There is a God.

There is a purpose to this life.

We are both body and spirit, and that spirit existed before - and will continue to exist - after these "college years" of life here at the University of Earth.

Death is not the end.

My marriage and family bonds will continue after this life.

This mortal experience is but a single preposition in a very large narrative. In that way, my daughter Miriam's challenges are temporary. They are also capable of refining our characters.

Despite the tragedy that caused her condition, I believe Miriam had a decision in her status here on Earth. That may sound utterly ridiculous, but I have reasons (too sacred and personal to share) that have affirmed this belief. 

How convenient, one might say. Proof that religion is the opiate of the masses.

Believe what you want. I know what I've seen, what I've felt. I know by the extraordinary spirit behind my daughter's eyes. I have seen lives changed because of her. I have seen her purifying influence in my life.

How do you do it? people ask.

We don't, I reply. God does it. My daughter's courage and optimism does it.

There you go.

Miriam, 2006. What a Cootie-Patootie.

Out of the Mouths of Sassy Children...

As Miriam has the opportunity to try out new technologies, a clear but elemental truth is beginning to manifest.

I drive something like this:

She uses things like this:

So not fair.

Miriam has been using her communication device regularly for over a month now. To understand the significance of this, imagine your baby suddenly turned its head 360-degrees and said:

"Dang it mother, just change my butt already."

The device itself looks like an iPad, and acts as if designed by Microsoft: sleek and incredibly buggy. As a voice scrolls through various choices, Miriam uses her head to hit a switch and select the one she wants. It then speaks aloud in a younger girly voice.

I need.

She hits the switch and it goes to a submenu. It scrolls through a few choices until it reaches the one she wants.

Help.

More scrolling. Click.

Something hurts.

Click.

My body.

We ask a simple question, such as "So does your body hurt?" and wait for a response. If the phrase was intentional, she will smile as confirmation, and then we obey as best we can regardless if she meant to hit it or not. In this way she is learning a new language through our responses: using vocabulary and syntax to communicate. It takes time.

She hits a lot of phrases that make no sense. She finds patterns. She gets tired and the voice keeps droning on. Yet two things have emerged in these early stages:

First, it is interesting to see her use phrases that communicate, even if they are not exact. For example, by the expression on her face and the stiff tone of her body, she was clearly in distress. If she's in her wheelchair for too long, she can get sore and stiff - and then comes the high-pitched squeals until we put her back in her bed.

"What's wrong?" I asked. "You have to tell me."

Pause. Device scrolls.

I'm mad.

"Why are you mad?"

I'm sad.

I'm scared.

I need onlee zpeak wan languaage, mon cherie.
L'lanwage d'love.

It was clear that, whatever she actually felt, it was negative, and that meant she needed help.

Ages ago I learned to speak French, serving as a missionary for The Church of Jesus Christ of Latter-day Saints. Arriving in Lausanne, Switzerland, I desperately wanted to be understood. It didn't help that the typical French-speaking citizen looked at me with an expression akin to stepping into dog poop.

Still, I tried: Me! Hungry! Bread!

So I've been there. She's learning to speak, and we're learning to listen.

The second surprise in these early stages is that she has immediately picked up a few phrases, mostly connected to an immediate need.

Something hurts. 

I want my bed. 

Sanitation Alert - Hazmat Level 5.

(The last was added by me. It's a lot cooler than Dang it mother, just change my butt already.)

Every so often, however, she has shown the ability to go beyond communicating basic needs. Once, when Mom told her she would help in a few minutes, Miriam's response was a little sassy.

You've got to be kidding me.

When brother came by, she decided to add:

I am a princess, kneel before me.

These are the moments that make life worth living.

A couple of weeks ago, I was playing a video game. She watched next to me as the device dutifully scrolled through choices. I was onboard an alien spaceship, taking down alien monsters with a laser pistol.

That's weird.

"I know, right?" I replied, as if she's always spoken to me. "It is pretty strange."

Can I have a turn?

That made me laugh. "I wish, Missy Magoo. I wish you could." I stopped the game, turned off the TV, and started to leave. "I have to go pick up your brother. Mom will come get you in just a second." I leave. From the front room echoed a little girl's electronic voice:

Turn on the TV.

Great. I have a little girl already addicted to the boob tube.


***


ADDENDUM: 

The other night, we had this exchange:

I need. Help. Something hurts. My body.

"Yes, my dear. Can you please wait just a moment?"

I feel. Sad.

"I know sweetheart, but you're going to have to wait."

No.

"Hey," I reply. "Don't get sassy with me, missy."

Who would have thought I would feel so happy with a child who talks back to me?