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.
Miriam's older brother, Alexander Soren Tavares, was born in 1996. He was due to arrive in August but decided he was bored and arrived in June - nearly 11 weeks early. He also decided Dad didn't need to be involved, since Past Erik was racing to the hospital during said birth. The nerve. Adding insult to injury, he was also supposed to be a girl (Alora). Upon his unexpected arrival, announced proudly that the stem was indeed on the apple. Goodbye, Alora. Hello, Alexander.
Note: Not a girl.
Anyone who has had a premature child knows the slow dance between hope and despair.It's also a great way to gain a lot of weight.
What does "skin with dusky complexion" mean? Will my child have long-term issues? Why aren't there more snacks in the Parent Lounge? Will my child survive? Yep. He did.
He had a dark side, though, prone to rampant destruction:
We were so sure we were going to have a girl, so why the surprise? Alex explains he shoved past his sister in line on their way to Earth. He figures, tongue firmly in cheek, he wanted to give us a test run to prepare for Miriam's arrival. As he described it, with a few details thrown in for dramatic effect:
***
INT. HEAVEN WAITING LINE - DAY MIRIAM and ALEX wait in line to be born. She stands ahead of him in line. The two chat quietly until they realize they are both scheduled to join the Tavares Family. Realizing they will be siblings, they clap a high-five.
CU - CONTRACT Miriam reads the fine print at the diving board. She discovers she has a 89% chance of cerebral palsy. MEDIUM SHOT - MIRIAM & ALEX Alex is reading over her shoulder.
ALEX
Cerebral palsy, huh? Wow. Tough break.
MIRIAM
I know. Mom and Dad are going to go nuts. The good part is that they'll probably treat me like a diva. (she smiles) I also won't have to waste precious time chewing food.
ALEX
(thinks a moment)
Hmm...
(points toward the far right)
What's that?
Miriam looks, distracted. Alex shoves her aside, sprints down the runway, and dives off the diving board toward Earth.
ALEX
(voice fading as he falls)
"See you in a few yeeeeeaaarrrssss!" HEAVEN BORDER GUARD
(cupping hand to yell)
Hey, buddy! You're blankety-blanking eleven weeks early! (looks at his chart) And there's a stem on that apple!
INT. OPERATING ROOM - DAY
Doctors work furiously as they complete an emergency C-Section. INTENSE MUSIC, possibly something by Hans Zimmer.
INT. RECOVERY ROOM - DAY
MOM is, naturally, recovering. Her auburn hair cascades in curly waves upon the silken pillow; she is awake and alert and beautiful, an eye in the storm. DAD rushes in. He is ruggedly handsome, tall, slim, with a happy-go-lucky manner like George Clooney. As the baby was born while he was racing to the hospital, he enters out of breath. The nurses in the room gasp audibly, transfixed by his Clooney-like features.
DAD
Well?
MOM
The stem is on the apple. I repeat: the stem is on the apple.
CUE SFX - Long sad trumpet (wa-whaaaaa) and CANNED LAUGHTER. Scene FREEZES as they, the doctor and the nurses, are laughing. CHEEZY 80s STYLE MUSIC plays over the racing credits.
***
Better early than never.
I have no evidence to deny that this happened.
Our son gave us a scare, and his own challenges did prepare us for the strum und drang of Miriam's tragic birth and subsequent disability Yet he has done more than prepare us - he is a helper and friend and protector of his sister. Here's proof. We have this.
And this.
Don't forget this.
Or this one.
I almost forgot this. (But I didn't.)
I love this.
I imagine Alex has suffered in his own way since Miriam arrived. He is also burdened with people constantly staring - or idiots asking questions like: "So, is your sister retarded?"
(If you're curious as to my reaction to THAT little ditty, please peruse my post here.)
As Alex grew up, we found ourselves becoming very controlling. At first, his obedience and complicity seemed like a godsend.
Wow, what a great kid. He's unnatural, a golden child. He does everything we tell him. Kids are easy! We don't have to worry about him as much.
Or did we?
You have a life? Well neither so I, so step to it!
Children need guidance and discipline, and Alex was a very, very, very active child. Yet I remember the day when I realized my control was influenced by something greater - he had (occasionally) become the target of my fear.
Things are out of control. Alex was 11 weeks early. That was scary, and now this is worse. He is our one shot for grandkids. When does the other shoe drop? Clunk. There it went.
I hope our relationship is not overly tainted by our naive attempts to wrestle the chaos in our life. Time will tell. He bears with patience our requests for his service, or when Miriam's presence affects our ability to travel or have fun.
I swear. It's the flagon with the dragon.
I imagine he feels like both the Court Jester and the Henchman, constantly bid here and there by the King and Queen to do this and that for Princess Diva McSillypants.
Alex graduates from high school this year. He plans to work, maybe some college, then head off on a LDS Mission. Upon return, he will sail off to an independent life all of us are destined to live.
Where has the time gone?
I do not think he realizes what his service and sacrifices have meant to us. I hope he knows that we love him. I hope he knows his sister adores him. I hope he knows that he has not been swept under the rug.
Are we distracted? Yes.
Is he forgotten, or unnoticed, like a chair? Never.
I hope he understands that, when we are all reunited on the other side, to our heavenly home, he will see his sister in all her glory and realize - finally understand - what impact his service had upon her life.
