Lost? Here You Go. You Can Thank Me Later.

Thursday, May 15, 2014


Long Post Alert

I have found that my posts with the least amount of words are the ones that have the most views, so I try my best to get to the point on most occasions.

Doesn't always happen.

That being said, this entry delves into personal territory and therefore, being important to me, will be long-winded. Just like that last sentence. I'm not kidding. It is also less light-hearted as most of my other posts, as the subject requires context.

Still here? Now you have a decision to make. 

If you decide to leave, goodbye. Please visit again soon.

If you can stay, great. It's time to hear a story.

Found You

From my journal, dated September 1991:

"…Behold Sharla Leigh Anne Crawford, my girlfriend. It feels like a dream when I am with her. It doesn't seem real."

We'd met at a dance club. She asked me to dance. I was confused. Why would that gorgeous girl talk to me? Yet talk we did, for hours.

I remember how she looked at me, how she made me feel comfortable in my own skin. We talked as if we'd found someone lost and now found, reunited and excited to reconnect.

That night, walking home, I knew I had met someone special.

By Day Two, we were inseparable. We saw each other every day thereafter, enjoying a growing friendship that each of us privately foresaw would become something more.

Soon after, I wrote in my journal:

"…She's spiritual, open, funny, sensitive, loving, and beautiful."

 The word beautiful comes up a lot.

Just a few weeks after meeting her, I added:

"…I am in love with her. I have prayed to know if we should be married. I felt YES was the right answer, but to give it time."

The proposal was elaborate and went according to plan, and when I asked her to marry me, she actually agreed. I'm still surprised.

We married on June 19, 1992 in the Denver Temple (a sacred edifice of The Church of Jesus Christ of Latter-day Saints). There are not a lot of bells and whistles in an LDS wedding, but we believe that marriage can continue forever.

We are very different people. Yet despite my worries and angst at the prospect of marriage, my journal was very clear on my feelings. They were real, they were intense, and they reflected a young man who deeply loved this new person in his life - and completely floored by his good luck.

Looking back, it's interesting to note a common thread regarding her character, best summed up by this line:

"…She has had a difficult life at times, yet has valiantly risen above them…"

This would prove prophetic.

The Crucible, 1996

The idea of motherhood for Sharla was a bit like standing on a mountain with a pair of skis. Probably useful, perhaps even fun. Yet she would be just as happy to sit and enjoy the view as strap those suckers on her feet and scream down the hill.
She's always up for a challenge, though. She shrugs her shoulders and says,

Why not?

At first it looked like we could not conceive, having seen specialists and considering options. Three years later, the planets aligned and our little girl Alora was due in August 1996 - growing fast and very, very active on the ultrasound.

Alora moved a lot when Sharla watched Batman: The Animated Series, Star Wars, or Star Trek: The Next Generation. That should have been a clue.

Hey! Ultrasound technicians never make mistakes! 

Unbeknownst to us at the time, it was a spoiler alert.

On June 3, 1996, nearly 11 weeks before Alora was due, Sharla called me to say she was feeling an unusual pain. Should she go to the hospital? Was she overreacting?

If you're worried about it, I told her, Go on over and see what's up. What's the worst that can happen?

She wisely decided to go to the hospital, which is good, because there her body decided to have a placental abruption, which is bad. Apparently Alora was bored and had nothing else better to do. 
See? It makes perfect sense.

Alora also thought this was all kinds of fun, because she also turned out not to be Alora at all, but Alexander. You can learn more about this here.

I missed the whole thing. I was busy racing to the hospital.

Alex recovered in the NICU for a month. The first couple of weeks involved tubes and wires and lights and rows of other babies around his 3-pound body, some so premature they looked like aliens gestating in artificial wombs. 

We had to scrub our hands with caustic soap until they turned red, and we could not touch him for days after birth. We looked at him often, just looked, wondering how much he understood.

I wandered a lot, not sure what to do. I ate way too much.

Sharla seemed to fare better. She did not cry (much). She did not rant or lay blame or feel sorry for herself. That was my job. She rolled up her sleeves and got the job done.

She proved an attentive facilitator. She managed his monitor device (these kids have a higher chance of SIDS), and juggled appointments as he went to early intervention for his gross and fine motor skills.

He flourished under her care.

Our lil' Lumpy Peach Head.
Alex proved a very active and delightful child. He enjoyed Batman: The Animated Series, Star Wars, and Star Trek for some inexplicable reason.

(He also enjoyed Days of Our Lives, probably the result of brainwashing.)

Sharla gave up her job, her schooling - her life - to become a stay-at-home mom for a child who needed extra help.

She did not cry (much). She did not rant or lay blame or feel sorry for herself. That was my job. She rolled up her sleeves and got the job done.

From my journal, November, 1991:

"...I love it. This woman is strong-willed. She's no wimp, that's for sure."

Armageddon, 2003

Analogy time. Or is that allegory? I never can tell.

The following video represents the years between 2002 - 2005, with May 30, 2003 represented at the 1:16 mark.

We had moved to the Pacific Northwest in 1999. I was in advertising - then 9/11 happened, the dot-com bust happened, we bought a condo, and two months later I was laid off on the week of my 35th birthday.


Pregnancy rules!
Despite all this, we wanted another child. As before, it was unsure if it would happen, but this time Sharla decided she was done waiting - she worked to get healthy and lost 50 pounds.

Soon after, her body decided the apartment could be rented out again.

We had high hopes. We did what we could to avoid having another experience like last time. We passed the mark when Alex had been born. We reached the due date. My wife and I took breathing classes. We packed bags.

We were excited at the prospect of experiencing what so many other families take for granted - the intimate experience of birth. I preferred actually being there instead of showing up at the hospital as if I had ordered a pizza.

Thinking back, a pizza sounds really good right now.


Naughty Word Alert

The best way to describe the night of my daughter's birth is to use a word that is too vulgar to appear in a nice little blog like this one. To protect you, I've scrambled it below. 
You shouldn't even try to figure it out, because it's inappropriate 
and you've committed a sin just looking at it.


Thank you for not unscrambling this word. 
I know you wouldn't ever, ever do that.


Inside Joke: "Wait. No! I signed up for debate!"
Our daughter was born via emergency C-section, but this time she had been without oxygen for 20 minutes. I was ushered out of the room at the exact moment when her motionless body was transferred to the resuscitation table.

Those 30 minutes alone in the hall, waiting and praying as I paced, are still bright in my memory. 

That night, Miriam fought to survive. She was in bad shape. I went in to sit with Sharla as she lay in the recovery room, and she awoke like Sleeping Beauty - I kid you not. I remember thinking how beautiful she was, how serene. Here she had been torn open, her newborn child fighting to live, and she was the one assuring me it would be fine.

Who does this?

She did not cry (much). She did not rant or lay blame or feel sorry for herself. That was my job. She rolled up her sleeves and got the job done.

Dory's Fine Advice

One of the stupidest - and perhaps one of the smartest - things we did soon after Miriam's birth was go see a movie. We needed to get out of the hospital.

We saw Finding Nemo.

If you've seen that movie, then yeah.

I am glad it was dark, because catharsis is neither pretty nor dignified. You just bury your face in your coat and hope nobody can hear you sobbing.

In the ensuing months, as Miriam's challenges came clearly into focus, we realized that her challenges were worse than we originally thought. They were forever. 

Parents with disabled children can be deluded - we really can. We have a level of hope that is too often inconsistent with reality, untempered by experience.
Maybe she'll sit on her own when she's five years old.

Maybe she'll learn to eat by mouth without throwing up.

Maybe she'll learn to sleep without choking.

Maybe we can convince her neurologist that her involuntary stomach crunches are infantile spasms. He doesn't take us seriously.
Good luck with that.

Raising a child with severe disabilities can feel like you are drowning. It also brings out your character, for better or for worse, over the long haul. 

You know what else tears you apart?
The death of Sharla's father on the night that your daughter is in the hospital getting steroid treatments for her infantile spasms.

The death of my father almost a year later.

The loss of our seasonal business the week after your daughter's tragic birth.

Our car getting stolen from the hospital parking lot the very hour of your daughter's birth.

Being without regular work for almost-three-freaking-years.
We did not see a night out, alone, until 2005. We took turns sleeping on the couch in case Miriam's acid reflux kicked in and she threw up, choking. 

It's not the years. It's the mileage.
For Sharla, it nearly broke her. I will always regret not serving her as well as I could have, too busy losing myself in food or distraction.

Thank God we don't drink.

After those first couple of years we began to rebuild ourselves and find our bearings, one step at a time. I returned to school to get my Masters in Teaching. Sharla revealed a strength that has since proven invaluable both personally and legally - her ability to organize.

Pretty much sums it up.
Doctors and nurses and therapists and lawyers have all commented on this. In a different world, law offices would fight to hire her.

She manages paperwork, schedules, medications, insurance, caregivers, equipment, doctor's visits, therapist visits, pump refills, feeding tube replacements, wheelchair maintenance, school visits, IEP meetings, cochlear implant maintenance, orthotics, Ketogenic-diet food prep, specialized clothing, clothing she freaking invents like Miriam's bibbities, eye doctors, dietitians, neurologists, speech therapists, gross motor skills therapists, hearing specialists, and a host of other things that would fill another couple of paragraphs.

All while putting herself through school, serving as a substitute EA, and managing a teenage son and a deeply self-centered husband. 

I know, right?

Dory the scatterbrained fish offered good advice:

Just Keep Swimming. Just Keep Swimming.

Often you have no other choice. I get the feeling that even if Sharla had the choice, she would put the same amount of energy for the welfare of others.  

She does not cry (much). She does not rant or lay blame or feel sorry for herself. That is my job. She rolls up her sleeves and gets the job done.


Now it's Mother's Day, 2014. Flowers are traditional, and we say a lot of thank yous, but it never feels adequate. We will have been married 22 years in June.

Age, time, challenges, and experience have turned us both into Ample Americans. We're now competing against each other in our own Biggest Loser Challenge. That requires a good deal of rewiring after a decade of self-medication.

Yes. We've aged a lot. Shut up.
Miriam thrives, her seizures under control for now. There are still plenty of long nights. The exhaustion can be crippling.

Yet I look at Sharla and see the same gorgeous girl I met in 1991. She is quieter now, more contemplative. She has developed super hearing, tuned to a single errant cough. There is a level of loneliness she keeps hidden away, because she does not want to show any cracks in the armor. She fights a deep sense of guilt, which too many mothers harbor. Her life is so entwined in Miriam's care that I worry she will feel lost once Miriam decides to move on to the Other Side.
I admire my wife more than I can express. She keeps swimming. We may feel like we're drowning, our mouths just above the water. We smother our fatigue and grief and worry with too much food, not enough sleep, and too much distraction. But we're breathing. Much of it due to her loving diligence, her personal sacrifice, and unconditional love.

I imagine The Lord considered her when he said:

Greater love hath no man than this, that a (wo)man lay down his life for his friends.

From my diary, 1992:

"I still cannot believe this is happening. I love this girl more and more each day."

It is still happening. 

As Captain America says: You will always be my girl.

Leave it to me to end this with a quote from a superhero movie.

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