If you think about it, eating food is weird. If an alien showed up and asked, "What does eating mean on Planet Earth?" this is how I would try to describe it:
In addition, we add custom and ritual to give this ridiculous notion some kind of meaning.
____
My daughter Miriam, on the other hand, eats on a higher plane of existence. If I was to present a menu based on her daily meals, this is what it would look like.
Note: Not accurate, as it changes regularly
Instead of all that boring chewing, her form of eating has evolved. Using an analogy, if using the mouth to consume food daily is considered a 20th Century General Cultural Standard, then Miriam's version would be considered "Woke" and "On the Right Side of History." It looks like this on the outside:
It works like this on the inside:
Though we are always reminded of this:
If you recognize this reference, your geek cred just went up 357%
And sometimes it reminds me of this:
If you recognize THIS reference, give yourself another 218% bonus
So is it weird that my daughter uses a G/J tube instead of chewing because if she chewed she'd continue to aspirate and risk another bout of pneumonia and that's bad?
Not really. For three reasons.
First, because it is, like many of the constructs my daughter must use, a scientific miracle. 100 years ago, she would not be alive.
Instead, she gets to take a great photo with our friend (and one of her caregivers) Donna.
The second reason the G/J tube is great is it allows us to perfectly measure a keto-friendly diet, which has single-handedly held off her seizures for six years and counting.
I don't think you understand the importance of that, so I'll use a bigger font, add color and make it bold.
SIX YEARS AND COUNTING
I include a picture of Miriam as a mermaid. It does not reinforce my point. It's just cute.
The third and most important reason having a tube and pump is because it allows me to do something rad.
I can fill a clean bag full of chocolate milk and pump said milk into my mouth while I watch a movie.
The technology allows me to have a constant supply of chocolatey goodness over the course of two hours, and nominates me as the laziest (and smartest) man in the entire world.*
Please Note: This post is going to be both spiritual, and religious, in nature. If that concerns you, read it anyway. You might like it. Please Note, Part Two: That being said, what I'm about to share is true.
The Power of Spirit aka Divine Inspiration
Like mother, like daughter.
My wife saved our daughter's life.
She would probably refute that statement, but with some hindsight you begin to notice interesting patterns. When you notice that timing was everything, especially when there was no reason to do what you did with what you had at the time, one looks for clues.
Seriously, I wonder. How did we avoid that particular bullet?
Things go bad, yet they can be a good deal worse. That being said, one of the blessings we sometimes take for granted are people sensitive enough to both listen to divine inspiration and act upon it.
My wife is one of those people, and she does it more often than she cares to admit.
For some readers, the notion of divine inspiration may seem a convenient way to describe ordinary intuition. Yet I firmly believe there are times when we are guided by subtle but powerful inspiration from our Creator.
I won't delve into the details here, but I will be frank. I personally have received information that A) I did not possess at the time that B) came into my mind as clearly as a voice that C) proved to be exactly what was needed at a crucial time.
Again, timing can be everything.
***
Last month, it worked like this.
Sharla saw Miriam's signs and, at first glance, they did not seem much of a problem. She had the tools to manage it, but despite a good night's sleep Miriam needed two liters of air to keep her saturation at the right level. Other than her racing heartbeat, there was no coughing or gasping or other distress. Pretty typical.
Yet Sharla felt she needed to go to the ER, so she did. She also felt impressed to bring an overnight bag, though I'll admit that in our life that's just good practice.
For the rest of the story, if you're short on time, here's a 1:45 recap of what happened (just in the lungs instead of the brain).
Still reading? Okay.
At the ER, an x-ray revealed pneumonia. Now Miriam needed four liters of air to keep her sats up. The doctor there decided she needed transport to Children's Hospital to be safe, though the ambulance did not flash its lights. Yet by the time they arrived, Miriam was on six liters of oxygen.
When they reached the bed at the Children's Hospital ER, Miriam's saturation had dropped to 50% and she was on ten liters of oxygen. Progressive x-rays revealed bacterial infection blooming in one lung and, within a short time, spreading to the other lung.
Here's the thing. It's never just one thing with my daughter. There's always something more.
Note: This is an analogy.
Long story short, Miriam crashed while in the Children's Hospital ER. The pneumonia had cascaded into ARDS, or Acute Respiratory Distress Syndrome. You can learn more about that here.
Scary stuff.
Taking her upstairs to the ICU, they placed a central line near her collarbone - which punctured her lung and caused it to partially collapse. They added a shunt in her ribs to drain liquid and gases surrounding her lungs.
I eventually arrived from work and had some time alone with Miriam and my wife. My daughter was in bad shape. How did things go downhill so quickly? For the first time in a while I was visibly shaken at the unexpected turn of events.
A friend and I provided Miriam with a priesthood blessing. Again, for those not of my faith, it may seem a quaint ritual, yet I have seen miracles exercising this power. For those unfamiliar, here is a great primer on priesthood blessings.
Inspiration is another name for personal revelation. This means you get information unavailable to you at the time (such as what the future might bring), but in a way that provides complete confidence. I remember the distinct feeling that came moments after the blessing finished, something I've felt many times in my life.
She will be fine.
I haven't always felt this after a blessing, but when I do it has been right. Always.
Fair enough, I thought, as if God was standing there. Thanks for the update.
***
With inspiration, with the Holy Spirit, there is no fear. The doubt is gone, I feel confident in my choices. I actually feel something I normally never feel: peace. I cling to this feeling when things look the more hopeless.
I felt this inspiration the night Miriam was born, struggling to live.
I felt this inspiration the night Miriam had the flu a few years ago and it turned out to be a rotavirus.
I felt this inspiration during a grand mal seizure, when I placed my hand on her head and offered a blessing and watched the seizure stop within seconds. Without medication, mind you.
***
Inspiration often comes as shared intelligence. I expressed to my wife I felt Miriam needed to be intubated. That's a rough thing to do to anyone, but it felt right.
She looked at me and said, "You know, I've felt the same thing."
We told the attending nurse a few minutes later, who looked a little surprised and said, "I came to see what you thought about that option."
Of course you did, because we knew before you arrived. We'd been inspired and prepared in advance. She's never been intubated aside from surgery before. No one had suggested it. She was stable, but struggling. For both Mom and Dad to have this same thought, mere minutes before the doctors come to the same conclusion in another room?
Coincidence? Maybe. Mutual decision-making based on experience? Perhaps.
Nah. It felt different, for one clear reason: My fear was gone.
***
Please Note, Part Three: Another analogy.
***
Please Note, Part Four: What the dragon really looked like at the time.
All of us fight dragons. Our family's particular monsters are more obvious because cerebral palsy is overt. It can be easy to think we have it worse, but because it's...well, so obvious.
So now I'm going to get schmaltzy, but there a good reason for it. It's called context.
Ready? Okay, here goes.
It is easy to define ourselves by our trials. One of the many hazards of that kind of thinking is that when all we highlight are the dragons in our life, all the troubles we face, we never see the treasure that may be at our feet. There IS treasure in everything, but sometimes we have to force ourselves to see it to keep going.
All right. I'm off the schmaltzy soapbox.
My daughter Miriam gets sick every winter. It used to be chronic, not because she is sickly or has a poor immune system, but because cerebral palsy reduces the ability to do those things we take for granted: cough and spit, blow our noses, spit a gob off a bridge, that sort of thing.
Gross? Yep. Essential? You betcha.
For kids with this challenge, illnesses––especially the respiratory kind––crop up more frequently. Pneumonia is one of the leading causes of death for those with CP so, add to the mix that public school is one giant petri dish, winter is always a scarier time for us.
So we take precautions when she gets sick to help prevent a visit to Urgent Care. We have an oxygen pump she wears for extra saturation at night to help with the sleep apnea, and a saturation / heartbeat monitor as needed. We have a suction machine––the single grossest device more appropriate for the Baron Harkonnen in Dune, but very, very useful when she cannot clear the gunk the rest of us discard in a tissue.
We also started using a chest physiotherapy device. Miriam wears a vest and it literally inflates and shakes her like a doll to clear her lungs.
The jury is still out on this one.
So it was of no concern when she started showing signs of a cold or flu early last month. She coughed more and spiked a high fever. She spikes a fever at the opening of an envelope, so no surprise there. With all the interventions and monitors, we could keep an eye out for anything more serious.
By the third day she was sleeping through the night. The fever was lower, though she was still showing signs of distress. Instead of coughing, however, she was making weird retching sounds. We figured it was nausea, since with his stomach surgery it is more difficult for her to throw up.
Again, appreciate the gross stuff. It literally saves your life.
The next day, she was in a medically-induced coma on life support.
***
Hindsight is everything, of course. Looking back on this past month, I have tried to set aside my frustration and anger and exhaustion and look, really look, for those blessings we often miss.
It still sounds like a discarded Hallmark quote, but it's true:
Every dragon has its treasure.
Where is the treasure you may ask? Why does this post sound like the text version of a Thomas Kincaid painting? Read the next post to see.
___
P.S. I include this because it matches my analogy. And because it's just rad.
P.P.S. Yes, I used the word rad. If bell-bottoms and facial hair can make a comeback, so can groovy slang words.
We had a close call this past month, one that saw Miriam in the ICU at Children's Hospital for three weeks on a respirator and medical-induced coma. It was a very close call.
Many years ago, I was serving as a missionary in Marseilles, France for The Church of Jesus Christ of Latter-day Saints.
One afternoon we passed through a dense ghetto near the harbor. Tenement buildings, some hundreds of years old, crowded until the sky was just thin strips of blue. Trash lay everywhere and, in the heat of the day, the air stank of old fish and sewage. The style was noticeably Arabic, a street more appropriate for Cairo than Paris, and the mood toward Americans was tenuous at best.
Ugly. That place was ugly.
In that moment, however, I recall hearing birds––countless birds. Above, swallows nested in hollows where old stone had crumbled away. They had built an entire colony along the red-tiled roofs. The sound was lovely, echoing through that spot as it had for over 300 years.
It sounds like a badly-written poem, but it was true: in that moment, that place was infinitely beautiful. I had to stop and look with different eyes and see things clearly visible yet unnoticed.
Being a father of a child with severe disabilities is a mixed bag. There are equal measures of guilt and uncertainty and anger. There is also a nobility to the work. I would be remiss if I did not notice––and call attention to––those hidden blessings that are so hidden they stare at me in the face every day.
So over the course of this coming week, I plan to share insights we learned the three-week experience at Children's Hospital.
I hope it comes across as less "Woe is us" and more "Whoa, look at this!" Until then, to quote The Beverly Hillbillies:
It has been a while since my last entry. I did not realize HOW long until I crossed paths recently with a former coworker. Like so many interactions in life, most of interpersonal dialogue tends toward superficial moments you're both currently experiencing such as, "It looks like it's going to rain."
"So what happened to your blog?" she asked instead. "You were writing regularly, then just stopped."
I dunno, I thought. The skies look plenty clear to me.
Then it occurred to me this conversation was not about rain. I have a blog?
"Oh," I said. "The one about my daughter? I didn't think anyone read that."
"Well I did," she said. "So you should get back to it."
"Sure," I said, laughing. "I'll get right on that."
So I did.
It is easy to lose track of time when one is absorbed in the day-to-day. I have to remind myself that there are plenty out there who love and pray for my daughter, but don't have the luxury of seeing her on a daily basis.
So in no specific order, here are some selections of what's happened in Miriam's life since my last entry. Consider it a Five-Minute Catchup:
***
Miriam is twelve years old and currently in the seventh grade. With her speech device, she is slowly growing a more complex vocabulary.
She recently used her device to tell us to Stop because we were not attending to her fast enough. A couple of times, if she did not get her way, she announced I am angry.
She has also started this new expression of a lower-lip and exasperated breath, the pffffbb of someone irritated when she bored.
Yep. She's a pre-teen.
The Good News:
Since being on the ketogenic diet, Miriam's seizures went from 1-5/week to none in over two years. Extraordinary.
The Also Good News:
Mom and caregiver diligence has helped reduce Miriam's "tone-tantrums." This means she is not so stiff when she's uncomfortable and burning so many calories. She's grown over an inch and is finally gaining weight.
The Not So Great News:
Replacing her leg-joint back into its socket during her double-hip surgery revealed serious scoliosis of the lower back. She's now using a brace regularly (with Batman labels, naturally). The specter of back surgery looms in her future.
Making lemons into lemonade, Sharla wants to use the gnarly metal rods that were removed from Miriam's hips to hang curtains. Or melt them down into cool 80s punk jewelry. Rad!
Upon becoming twelve years old, Miriam now attends the Young Women's program in our church. She was kindly welcomed with fun chalk drawings on her birthday.
She attended her first church Girls Camp at Ensign Ranch, east of the Cascades. Upon her return, I saw a very, very happy and exhausted girl, excited to show off her beads she had earned.
With her permission, she donated her long, long hair to Locks of Love, getting a certificate in the process.
Meanwhile, her Mom graduated from South University with a B.A. in Health Science after nearly five years of online classes. She and I flew to Savannah, Georgia for the graduation and a great weekend celebrating our 23rd Anniversary.
We are thankful to those friends and caregivers who worked together to watch Miriam while we were away!
Miriam's brother Alex graduated from high school, earned his Eagle Scout award, and left earlier this year to serve as a missionary for The Church of Jesus Christ of Latter-day Saints.
He is serving in Colorado for two years, without pay, and enjoys the experience.
Just the other day, Miriam mentioned on her device––with no prompting–– Something's Wrong. I Miss
Brother.
Yes, she does.
There'a a good deal more to share, but I promised five minutes...and my time is up.
Thanks for reading.
(And yes, it does look like rain. At least by tomorrow.)
Today is Miriam's eleventh birthday. I cannot express how much I love this little goofball. Her spirit, enthusiasm and endurance motivates me to be a better person every single day. There are times that I mourn the things she will never enjoy. Yet I celebrate the hurdles she overcomes, again and again and again. And she does this with a smile. I wish I had her courage.
Speaking of courage, sometimes she scares me. Shhhh. Don't tell anyone. It's because she's a girl. A pre-teen girl. We endured the drama that was our son's early teenage years, but a girl? What new horrors will this bring to our household? I'd love to tell the future, yet there's a problem with prediction. To illustrate, enjoy this little gem:
We really can't predict a thing, can we? Yet I do it all the time. I am obliged to, because the day I let my guard down and stop considering what the future might hold is the day when the bad stuff happens. I have to predict yet I cannot predict, so fate is a crouching monster waiting to pounce when my attention falters. The future is like those statues in Doctor Who that look fine when you stare at them...but when you look away they will eat you.
If you don't know this reference to how life works, don't worry. You don't want to know.
To add more fuel to this ridiculous fire, here's EXHIBIT A.
A numerologist (defined here as a person who likes to make things up) said these pronouncements about the number eleven. You'll note the number eleven is the same number as her age:
Saint Augustine stated “the number eleven is the blazon of sin.”
Eleven is considered a symbol of internal conflict and rebellion.
Eleven is compared to the unbalancing of the number ten, a pillar in the universe, number eleven represented disorder.
Ten symbolized a complete cycle, by adding one; eleven was a symbol of exaggeration, extravagance and human sin.
“The eleventh hour” suggests urgency. Because the clock runs to twelve, this is the last hour to get things done.
My daughter is eleven. She is now a pre-teen. She likes pop music more than classical. She giggles when she's around other girls. She dresses better than I ever have and ever will. I think I saw a blemish. I'm doomed.
I rest my case.
***
Okay. Indulge me a little.
Here are a few pictures from various stages of her life, because it's her birthday and I have the right to show her off.
Note the Dorothy Gale hairstyle…
…Which makes sense, since her ensemble includes the heart-on-his-sleeve Cowardly Lion, the calm and deeply loving Tin (Wo)Man and the happy-go-lucky Scarecrow.
Years ago, but one of my favorite pictures ever. And I mean ever.
Back when she was two, with the same smile.
I think she was smiling when she was born, which is really weird.
Kindergarten.
This is a picture I both love and hate - because she is there and yet she is not, included yet a mile away.
Still, she made a great piggy.
See? Now that's just cute.
Do I sound biased? Yes I do. Because I am. Always.
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. 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.
PART ONE:
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 her challenges…" This would prove prophetic.
PART TWO:
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."
PART THREE:
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.
Awesome.
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.
***
WARNING:
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.
T CL EF CS K RU U
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.
PART FOUR:
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.
CONCLUSION:
Beautiful
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.
