Because I Can

Enjoying a ridiculously hot morning run. 

Just about a month ago, Dave and I celebrated our 11 year anniversary looking onto a beautiful beach with our two beautiful children.  

Today I celebrate another life-changing event...my run-iversary.  Seven years ago today I made a choice not just to run, but to BECOME a runner. I run because I CAN!  This is the story of the life-altering shin splint. 

I'd run before.  Beginning at about age 21, I saw something in running and in runners that I desperately wanted.  I wasn't sure what that something was, but I figured I needed to be a runner to learn the secret.  They had such purpose...such discipline.  I wanted what they had.  So I ran.

Well...sort of.  I lacked consistency and had quite the talent for making excuses, but about 3 days a week...a couple of weeks a month...I'd lace up in old Nike's I bought based on looks, strap an FM radio to my arm (this was before the days of the smart phone) and an Ironman Velcro strapped watch with a timer to my wrist, and out I would go.  Run one minute.  Walk one minute.  Repeat.  I would circle the block around my apartment complex chasing that mystery it factor all the runners seemed to have.

After about 3 years of my haphazard, poorly educated, and inconsistent search I found something so many others before me had also found.

I found that running really sucked, and I quit.

Clearly, this was NOT the mark of my maiden voyage to become a runner.

Two years, a diet of fast food and Dr. Pepper, and a toddler later, a scale I stepped on at Bed Bath and Beyond snapped me back into reality so hard I needed a neck brace.  In tears, I did the only thing I knew to do.  We got in the car and drove to Luke's Locker...the running store of all running stores, where even the salespeople are runners.  One thing I love about the running culture is how welcoming and inviting runners are, to everyone.  Even so, it took everything I had to approach the saleswoman, who may as well have been an Olympian in my book.

My first Luke's Locker shoes.
Brooks Adrenaline GTS
July 20, 2011

"What can I help you with, today?" she asked, with an inviting smile.

"Well...a lot," I responded.  "I want to be a runner."

The saleswoman chuckled, "Well, you're at the right place!  So tell me, why do you want run?"

I gestured toward my body.  Pale.  Untoned.  Still carrying 40 lbs that my one year old gifted me and that I so fiercely maintained with my love for Oreo's and cheese enchiladas.  "I need to lose weight."

"Okay, so you want to run to get in shape," my new Olympian friend replied.

"Um...well...yes, but more than that, I really want to be a runner."

She smiled again, "That's the easiest part.  All you have to do to is run!"

My face smiled, but my brain judged her.  "Easy for her to say," I thought.  "I bet she doesn't have any kids.  I bet she doesn't have a stressful job."  I'd tried to do it her way before, and it was hopeless.  "If all I had to do was run," I thought, "I wouldn't be standing here, in front of you, looking like the Pillsbury Dough-boy, wondering what's going to happen when I try to cram all this muffin top into all that spandex."

My first race:  The Vineyard 5K in Grapevine, TX. 

As I tried on shoe after shoe after shoe, she told me about how she, at 55, had taken up running when she went with a group of friends who were breast cancer survivors like her, and she walked the Susan G. Komen.  She was inspired by the camaraderie and kindness, and when she saw other cancer survivors actually running, not walking, the race, she figured if

they could do it, she could too.

If she could do it at 55, surely I could at 26.

An hour and a half later, I left the store equipped with a brand new sports bra, shirt, shorts, stability control shoes for my flat feet (certainly not purchased for looks), a new app that hadn't been out long called Couch to 5k, and a better attitude.

The first step was taking the first step and believing I was going somewhere.  I needed a goal, a destination, so I picked a race and made a plan for consistency and discipline.  Nothing would stand in my way this time, not even me.

I was slowwww...man was I slow. I had the gate of a 5-minute-old giraffe. But to become something, you have to begin. You have to make up your mind and just make it happen.

Susan G. Komen race - Dallas, TX. 

Somewhere between my very first five minute stretch of running and the bullhorn for my first 5k, I discovered something.  All this time, I'd been running searching for what they had, when the real true key was never out there.

Becoming a runner is a personal journey, crafted by every up and every down.  A runner is not defined by the miles she counts, but by the moments she embraces with each step.  Inspired to keep running, and excited to keep racing, I signed up for the Susan G. Komen, the race the saleswoman mentioned at Luke's Locker.  It was everything she said it would be, and more.  I had to keep going.

My first Half Marathon: 
Rock n' Roll - San Antonio, TX

I got faster.  Much faster.  I got so fast that within 6 months, I was finishing in the top ten of my division.  By month 8, I was sticking around for the awards ceremonies, taking home trophies, medals, and race trinkets awarded to the top three runners in each division.  Pretty soon, I added 10ks, 15ks, and even a couple of half marathons to my repertoire.

The weight I'd once set out to lose was long gone, but now I was a runner.  I no longer ran for fitness, I ran because I'd fallen in love with running, with racing, with the culture, and with all that comes with being a runner.

My first 10K:  The Bunny Run
- Dallas, TX

But sometimes there's a dark side to running...the injury...the sideline.  I'm talking, the injury that leaves you completely incapacitated for weeks or months.  For me, it started with a shin splint.

By my third year of running, a six-miler was an easy Wednesday, a far cry from the wide-eyed version of me who could not run a solid mile without walking.  I was preparing for a 15k race in January when I began noticing a pesky shin splint trying to cramp my style.  I tweaked my training plan, eased up, foam rolled, stretched, and did all I knew to do.

Running a 9.3 mile race with a shin splint not only makes for one absolutely miserable race, it is also a ridiculously stupid thing to do.  I knew that, but I ran the race anyway, and it was as awful as I'd expected.

My runs after that were pretty terrible too.  By the end of February, I was needing more rest days than ever before and cutting back on my mileage significantly, but this pain was just not getting any better.  In fact, it was getting much worse.

When I couldn't finish even half of a Saturday run at the end of March, I knew the time had come to make an appointment with my doctor for what I was fairly certain was now a stress fracture.  The feeling of defeat was mitigated only by the knowledge that this would just be a 3 to 6 week setback, at most.

The good news, the x-ray showed, was this was NOT a stress fracture.  The bad news was something didn't look right, and I needed a CT scan...which also was inconclusive, so I'd need an MRI.

Tibia - Cross Sectional image
of mass with "irregular borders"

If March was the month of pain, April was the month of radiology.  And then there was May.

On Friday, May 9th, about a week after my MRI, I was at work, wrapping up my Friday, and getting ready to head into Mother's Day weekend when I got a call from my doctor that left me utterly speechless.

"We need you to come in this afternoon so we can do more blood work," she explained.  The rest of the conversation is a bit of a blur with distinct bits and phrases such as, "getting you set up to see a really great Oncologist at Baylor on Monday morning," and words like "possible Ewing Sarcoma" and "possible Osteosarcoma" which are cancers of the bone.

Me holding Baker
Mother's Day, 2014

Suddenly, putting my running shoes on again became the least of my worries.  As much as I loved the Susan G. Komen race, I didn't want to run with a "survivor" status.  I wondered if I'd ever run again at all.  Would I be able to walk to the park with Dave while we pushed our son in the stroller?  Would I be able to give him the second child we'd been talking about?  Or worse...Would this be the last Mother's Day?

I could hardly speak the words to Dave.  We both cried and prayed all the way to the doctor's office to get my lab work done.  It was even harder to tell my parents.  There's really no good way to say, "Happy Mother's Day, Mom!  I might have cancer."

If ever there's been a time I realized my own mortality, it was on Monday, May 12th, sitting in that waiting room at Baylor, packed with people who had lost their hair to grueling treatment protocols and relied on oxygen tanks to help them breathe.

Once in the room, the oncologist remarked that he had studied to MRI reports and began explaining the odds of limb amputation for these types of cancer, various treatments, odds of remission, and actual prognosis.  Now it was time to get a game plan together.  He excused himself to go take a look at the MRI images and see, for himself.  I cannot adequately describe the moment when he returned.

"Well," he beamed, patting me on the other leg, "I don't get to put you in a wheelchair or make you bald!  You, little lady, do NOT have cancer."

I finally breathed for the first time since the previous Friday, though I was still confused.  The doctor went on to explain that while I did not have cancer, I did have a serious condition called Osteomyelitis.  The bone infection had set up at the site of what was likely once a shin splint.  Of course, at that point, as long as it wasn't cancer, I was happy to have an infected bone!

When four weeks of rest and antibiotics did not do the trick, the medical team resorted to surgery to clean out the bone.  Finally, this whole ordeal would be over, and I could run again in about 3 weeks.

What was supposed to be a half inch incision that would be a bit sore but not so sore I couldn't go camping that weekend, ended up being a 5 inch incision with no possibility of walking without crutches for at least two weeks.  Imagine my surprise when I awakened from the surgery with my leg wrapped from my knee to my ankle and my doctor explaining that he was about to insert a picc line so Dave could give me IV antibiotics every day for the next six weeks.

The surgeon stood at the foot of my bed and with complete sincerity explained, "Ma'am, I honestly don't know how you were even walking on that leg, let alone running on it.  I've performed this same surgery on professional hockey players whose injures were far less than yours, and they could barely move!"

He turned to my mother and Dave remarking, "I guess she's just got an incredible tolerance for pain."

To which they responded, almost in unison, "No, she's just that stubborn."

When the doctor said I'd be sidelined for another 12 weeks, I couldn't take it.  I knew I should be happy to have my life.  I knew I should be happy to have my leg.  But it was June 2nd, and I had been unable to run at all since March, and 12 more weeks may as well have been an eternity.

The first few days after the surgery were spent at home, feeling sorry for myself, and nursing my actual pain with the prescription we picked up from the pharmacy.

On the fifth day, I awakened with a determination I hadn't felt in quite a while.  I hadn't been able to run for months, but I was still a runner.  I was absolutely hell-bent on being cleared to run again, and I would do it sooner than 12 weeks.

I push my crutches to the side, swung my legs over the side of my mother's couch, where I'd been drowning in my self-pity for days, put my weight on my good leg, stood up, and took my first unassisted step.

As the infection had eaten mostly the side and back of my tibia, the surgeon apparently had to completely slice through my calf muscle in order to gain access.  This realization came to me as my left foot touched the floor and my leg provided the tension and support of a wet noodle.

Now my next task was getting myself up off the floor.  But I did.  Because I'm a runner.

And while my left leg was too weak to walk just yet, my right leg was just fine.  So I practiced walking with just one crutch and did exercises that didn't require me to use my left leg at all.

My leg did get stronger.  By my three week appointment, I was completely off my crutches.  At my six week appointment, they removed the pic line, and I was cleared to walk, carefully, for exercise.

"Wow, you're really looking great!" My surgeon remarked at the nine week appointment.

"So does that mean I can run again?" I asked, hopeful, but not expectant.

"Emily, you can run out of this office, if you're ready."  And boy, was I ready!

First race after July 31st clearance. 
Plano Balloon Fest 5K, Sept. 21, 2014 - Plano, TX

That was July 31.  I ran every chance I got for the next 8 weeks and on September 21, I ran my first 5k race after my 6 month hiatus.  Because I was a runner.

With just eight weeks of training and pure excitement in my tank, I ran my heart out.  I would have been proud to have just crossed the finish line, but third place in my division...I may as well have been an Olympian.

The following month, I lost my grandmother, and in the same week discovered I was pregnant with Lucibelle.  With three threatened miscarriages, 6 weeks of bed-rest, a premature delivery, and her seven surgeries before she was two and half, Lucibelle has been a novel unto herself!  I found myself needing to take many, many breaks both during and after my pregnancy.  But I always took the opportunity to run when I could, because I could.  Even during the breaks, I was always a runner. 

It has been nearly four years since the entire ordeal.  Throughout this journey, I've experienced quite a few time-outs due to illnesses, family tragedies, busy schedules, sick kids, and the list goes on...and there will be more to come.

But once you BECOME something, you recognize those situations for what they are, the mountains and the molehills, and convert them into the fuel that will drive your next mile.

People often tell me that running is crazy, and though they are kidding (mostly), they are kind of on to something. You see, so much of running really is in your head.

So much of life...really...and what we perceive to be the obstacles...it's in our heads.

Training is about establishing endurance and stamina: the "I-CAN" needed to power through. And just like that Little Engine That Could, once we convince ourselves that we CAN go that next step, there's very little (short of a true catastrophic event) that can get in our way. In fact, even in the wake of some major setbacks, that belief and strength can be sustained, and building back and exceeding your pre-tragedy status CAN be done.

What I know to be true in all of this is if I want something...I just have to get in it and do it. It's not about the time I have, it's about the time I make. It's about ignoring the voice that tells me to stop, that says it's been too long, that says I don't measure up, or that says that bump in the road means I can't get back up. It's about embracing the strength that God has infused within my soul to the point that it takes hold and radiates throughout ALL I do.

Forney, TX:  2nd Female Finisher

There will ALWAYS be excuses to stop, to give up, to NOT. Most days I don't even have to search for them.  There is very little in life I actually cannot do.  Through the courage of faith and strength of Christ, I can do so much more than I cannot. 

There was a time when I could not run because I was too inconsistent. 

Then, there was a time I could not run because it was too painful.

There was a time when I was unsure if I would ever run again.

And so, today, I run because I can.

The Baby Down the Hall

My mind’s ramblings are generally inspired by my children, and this one is no exception.  It is rooted in Lucibelle’s story, but it is really a reflection and confession of the heart for me, as a mom.  It is the story of my Hallelujah…the cold and broken kind. 

A friend today, shared an article on Facebook which stated, “Given the nature of NICU…the feelings of emptiness and grief, the uncertainty and ups and downs, the lines, wires, monitors and alarms, not to mention the security buzzers at the entrance of the unit or the constant rigorous hand-washing, it came as no surprise to me that parents who have experienced premature birth are at greater risk of postnatal depression, anxiety and post-traumatic stress disorder (PTSD)” (Oglivy, 2017).  The article goes on to explain that 40% of NICU mothers experience postpartum depression.  Now, I have not gone on a fact-check for these percentages.  To those who have never experienced a NICU or a PICU, this may sound like lies, damned lies, and statistics.  But to me, it sure seems logical. 

Coincidentally, Facebook also reminded me that three years ago, today, we got to bring Lucibelle home from a three week hospital stay that, for us, was life-altering.  At 7 weeks old (adjusted age: 1 week old) she had already endured all of the pokes and prods that comes with three weeks in the hospital, along with an EEG, an MRI, 2 nasal feeding tubes, and two lifesaving, surgeries. 

I never dreamed we would have a feeding pump, a c-pap machine, a nebulizer, a pulse oximeter, and various other medical equipment in our home.  I never dreamed that even three years later we would be planning her eighth surgery.  I never dreamed (or nightmare’d, if you will) the amount of medical bills a little person could gather.  I never dreamed of the amount of prayers and love we would receive from friends, family, and people we have never even met who live in places we have never even been. 

Even so…for so many other moms and dads out there, Lucibelle’s journey, by comparison, is such small potatoes.  There are moms and dads out there whose babies have fought far greater battles.  There are moms and dads out there with medical equipment I probably could not even power on.  There are moms and dads out there with medical bills so astronomical, I could not even begin to imagine.  There are moms and dads who pray for, support, and encourage other families of medically fragile children, while simultaneously cheering on their own children as they fight disease and disability. 

Then, of course, there is the worst imaginable scenario, there are moms and dads out there who suffer the loss of a child and whose babies will never come home, which leads me to another reminder Facebook sent me this week. 

On July 8, 2015, just before 3 a.m., I rocked Lucibelle and stared at monitors with which I had become all too familiar.  The ICU was cold, lonely, and scary.  Learning to feed my baby through the new surgically placed port in her belly, even scarier, and the IV ports and monitor leads did not make it any easier.  Not only was it an easy place to drown in sorrow for my baby, it was also an easy place to settle into my own depression.  The silence had been so loud, but the sound that broke the silence was staggering…a sound my heart will never forget. 

It was raw.  It was animalistic.  It was much too real for my sleepless stupor.  There was no mistaking the mother’s wail down the hall, “What do you mean, she’s dying?  Please, God, no!  Don’t take my baby!”

The feelings of dread, helplessness, hopelessness, despair, and darkness once looming on the horizon, engulfed me in all directions. 

I held my baby even closer.  Lucibelle would be okay.  She would come home with us.  I sobbed as I sang Leonard Cohen’s Hallelujah and watched her sleep as the storm in my heart was punctuated with electric surges of guilt. 

The mom and dad down the hall would never take their baby home, and in that moment, these strangers became some of the most poignant characters in my life’s narrative, though they will never know it.  I never saw the baby down the hall but I saw her parents pacing frantically and walking family, who had gathered in the waiting room, to say their goodbyes.  Lucibelle’s room faced a nurses station into which I would watch the nurses duck, regain their composure, console one another, and then go right back to their top priority…a priority that the term “gut wrenching” is far too benign to describe…the priority to calmly, peacefully, and compassionately guide this baby and her family in her last moments. 

Suddenly, Lucibelle’s feeding port seemed so minuscule in the grand scheme of things.  Also in that instant, however, Lucibelle felt so much more fragile in my arms.  She did not feel like a baby that would bounce.  She felt like a baby that would break.  Like if I was not ever so careful, ever so vigilant, ever so protective…like if I ever got comfortable…the next strangers down the hall would be us.  The anxiety was crippling.

Not a day goes by that I do not think of the baby angel down the hall.  I imagine she was like Lucibelle, with a fiery passion for adventure, dance, and anything that sparkles.  I wonder if she is maybe one of Lucibelle’s guardian angels, and I pray for the mom and dad who, three years ago today, were mourning the loss of their baby girl. 

Unlike other stories, where the emotional response dissipates with time, the story of this moment in our first ICU stay brings back that flood of emotions.  It is no mystery to me how mothers of children who spent time in the ICU could go on to experience symptoms of PTSD, anxiety, and depression. Even while writing this blog, fighting back the tears is absolutely impossible…as though it is all happening all over again.  The pain in that mother’s voice.  The pain on those nurse’s faces.  The pain of loving someone so much you actually ache inside.   

One of my favorite verses from Leonard Cohen’s song says, “Love is not a victory march; It’s a cold, and it’s a broken hallelujah.”  

I hum the tune.  I dry my eyes.  I take a breath.  I rejoin my now.  I try to absorb every moment and be in attendance for the beauty of today.  Sometimes with the deepest pain…in all that is cold and broken, God also grants the deepest love.  For that, we praise Him.  Hallelujah. 

Three years ago, today, our baby came home, and today, she is an energetic ball of sass and sugar. 

Sometimes, before it instantly transitions into the past, the present makes its mark…a reminder, of sorts...like the scars that adorn Lucibelle’s abdomen.  

Then, they were wounds, painful surgical incisions sewn and covered with gauze and medical tape.  Now, she doesn’t even know the scars are there, though I notice them every day.  She runs around with that little milk-belly hanging out without a care in the world.  And I chase after, hoping to catch her if she falls.  Someday, though, she will look down at her scars, and she will ask where they came from. 

We will tell her about her surgeries, but more importantly, we will tell her that these are the reminders of the many, many beautiful and loving people who loved her and prayed for her before she knew them. 

And perhaps, when she’s old enough to know, I’ll tell her how her beautiful marks are my prayerful reminders of the worst kind of pain, the best kind of love, and the baby angel down the hall.  

The Human In Me Doesn't Care What You Think...But Don't Listen to Her

My mother, Donna Rial Baker, always told me, to build great relationships keep in mind...it’s not about I feel about other people or how other people feel about me. It’s about how other people feel about themselves when they’re around me. She always told me that. That doesn’t mean I always remember.

Danny Mack, a pastor and leader I’m proud to call friend, told me I’m not a human having spiritual experiences...I’m a spirit having human experiences... Sometimes it seems like the human sure is experiencing a lot.

A great principal for whom I once worked told me, "Emily, we are perceived by our actions, not our intentions." (There's a good story that goes with that one, I'll write about some day.)  I generally forget that one too...until it's too late.

Jesus Christ tells us to pray for our enemies...to do good to those that mean us harm... He tells us that. But I don’t always listen.

Man...batting a thousand here, huh?

Sometimes I find myself racking my brain for answers...and lately it’s to the question, “Why doesn’t this person like me?!”

I mean...I like me... I didn’t like me very much in junior high but that’s a different post for a different day.  I know I’m not the coolest, smartest, funniest, or even sweetest person out there... definitely not the most organized or responsible... and I’m a terrible housekeeper... but I think I’m generally likable... so why do I still have enemies?

I don’t want enemies.  I've heard other people say things like, "Man, I don't care what other people think of me...that's on them."  And maybe they really feel that way.  I, however, will admit it, in writing: I, Emily Ann Rial Christensen, do solemnly swear... I care about what other people think of me.  

Not in the shallow...I care what people think of my looks/clothes/accent/taste in music sense.  And not in the sense that I'm going to become some inauthentic version of myself just to please others.  But I do care about how I am perceived...how my actions and words are interpreted and why they are interpreted that way...and how that makes other people feel...I do care about that.  After all, isn't that how we actually determine who we like and who we don't like?  It's about how we feel about ourselves when we're around them.  

I don't want to be hurtful.  I want to be liked.  I want to be valued.  

So maybe the biggest mistake is racking my brain for answers.

Because when I ask my brain...the human responds. The human rolls her eyes, and folds her arms (I don’t know about your human but mine is perpetually 15, has a southern attitude and a sarcastic tongue.) and says things like:

*Haters gonna hate!

*You can’t make everyone happy!

*Their loss!

The human makes me feel tough, like I don’t really care, when down, not so deep, I actually do care, much more than the human would like to admit.

And while there is truth to the idea that not everyone is going to like me...does that mean I just give up?  Is that what Jesus would do?

Maybe instead of racking my brain, I should be searching my heart. The heart knows what the human does not care to hear. And if I listen intently and intentionally, I can hear a much calmer and wiser voice prevail over the human’s snark.

It’s the voice of the spirit. It’s there all along...but my human just has such a big mouth.

My heart tells me to pray...but not to pray that they will like me... that they will “get” me... that they would be nicer to me...

Oh, I’ve prayed that prayer...the prayer for myself... the prayer that God would change their hearts. I prayed fervently and sincerely...I sincerely needed them to change. And I waited. I waited and waited and waited. And then one day, out of the clear blue, guess what happened...

Absolutely nothing.

We’ve all done it...prayed the human prayer.

But the prayer of the spirit is different.

The prayer of the spirit is reflective. It asks me to reflect on how others may feel when they’re in my presence. It insists I pray for peace for those who do not wish me well, and that I pray, for myself, a better understanding of how to live this calling...to shed the mask and to BE love.

The prayer of Saint Francis sounds, to my heart, much more like the prayer of a spirit having a human experience...like someone who genuinely cares about others with no ulterior motives...like someone who racks her heart for answers:

The Prayer of Saint Francis

Lord, make me an instrument of your peace:

where there is hatred, let me sow love;

where there is injury, pardon;

where there is doubt, faith;

where there is despair, hope;

where there is darkness, light;

where there is sadness, joy.

O divine Master, grant that I may not so much seek

to be consoled as to console,

to be understood as to understand,

to be loved as to love.

For it is in giving that we receive,

it is in pardoning that we are pardoned,

and it is in dying that we are born to eternal life.

If You've Met One Kid With Autism Spectrum Disorder...

On most days, blue is not my color, but today is not most days.  

Today is World Autism Awareness day, and one of the ways we bring attention to this cause is to wear blue.  It was never our intention for Baker to know his diagnosis until it became important to know...which may be never.  Honestly, we kept it to ourselves for a while.  People just wouldn't understand...but I guess that's why we have awareness days.  

So today, blue is very much my color.  And I wear blue today with a greater awareness of Autism than I had on April 2, of 2017.  I'm no expert in the matter, just a mom who has done my research, but as my awareness increases, I feel it is my duty to also increase the awareness of those around me...not awareness that ASD exists...but awareness of what the diagnosis actually entails (to the best of my ability, at least).  

"Autism...that's like that Dustin Hoffman character...right?"

When most people hear Autism Spectrum Disorder, their mind's eye constructs an image based on experience.  If personal experience does not generate any hits, they generally land on well known characters, such as Rain Man, Sheldon Cooper, or Carley, the non-verbal young lady from an episode of 20/20 who has benefited from the use of technology to communicate for her.  And they would be right, in part, because each of these individuals exhibit ASD to varying degrees.  

But relying on one experience to characterize a cognitive difference which has evolved from multiple diagnoses to one now defined on a spectrum, actually paints a highly inaccurate portrait of the individual diagnosed.  For those on the spectrum, one size does not fit all; one size does not even, necessarily, fit most.  

When describing autism, I often default to a quote well known to those in the ASD world.  Dr. Stephen Shore explains, "If you've met one person with Autism, you've met one person with Autism."

He is Baker

My son, Baker, is one of many amazing and unique individuals with an ASD diagnosis.  He if gifted, creative, compliant, and eager to please.  He is loving, affectionate, has a significant capacity for empathy, is protective of his little sister, and has a heart for Jesus.  He is not Rain Man.  He is not Sheldon Cooper (though sometimes he has his moments).  He is not Carley.  He is not anyone you've ever met.  He is Baker.  

From birth, Baker exhibited some quirks and delays, but all children develop differently, right?  I didn't realize that his difficulties feeding, his delay in crawling and walking, or the fact that he barely spoke until he was 2 were signs or symptoms of anything at all.  After all, once he began talking, he used full sentences and vocabulary well beyond that of a two year old...as though he'd previously lacked enough words to adequately express his viewpoints on life, and once he had collected all of the words he needed, he decided it was time.  He was like that with walking too...and potty training...and drinking from a straw.  He did these things well after his peers, but once he finally acted, it was as though he knew how all along.  

Baker began reading at three, and when he turned four we enrolled him in the private pre-K program where he soared to the top of the class in his reading skills.  Coloring, however, was another story.  Baker would rather stack and line up his crayons than color with them, and it soon became quite evident that coloring was an exhausting task.  Another challenge for Baker was playground equipment.  He would only go backward down the slide, on his belly, and he refused to sit on the swing-set. Monkey bars and jungle gyms were also out of the question.  Even so, he loved school.  He had tons of friends in his class, he loved his teacher, and he talked about school all the way home on our daily drive.  

Something else began happening toward the end of that year, and it was the first thing that really got our attention.  Baker stopped eating.  I don't mean like most kids who will only eat a few things.  I mean, over the course of about six months, Baker's diet dwindled to white Wonder Bread (no crust) and water.  When he would eat something he "trusted", he would often gag on the food and empty the contents of his stomach directly on his plate.  Going out to eat, as you can imagine, became a bit of an ordeal.  My mother encouraged me to talk to his pediatrician, who ultimately referred us to a really spectacular occupational therapy clinic.  

It was from the physical therapist that we learned that Baker has sensory processing disorder, which occurs when the brain has difficulty filtering or interpreting sensory stimuli (smell, taste, touch, sound, and even visual stimuli like flashing lights).  This explained his issues with balance, fear of crashing, preference for quiet activities, hatred of fireworks and camera flashes, and, of course, his dietary issues.  The therapist also diagnosed Baker with Dyspraxia, a motor skill condition which makes it difficult for Baker to coordinate and plan his movements.  Early signs include weak feeding reflexes in infants and delays in both fine and gross motor skills.  

Baker attended occupational/physical therapy twice a week during his Kindergarten year, and we saw huge improvements in his coordination and muscle tone.  Very gradually, he began incorporating more food into his diet, though he is still more limited than most children.  

Toward the middle of first grade, however, Baker added yet another piece to the puzzle: severe anxiety.  Baker's sensitivities to sound made it difficult for him to feel safe in large, loud crowds (such as the cafeteria and school assemblies...which he refused to attend.)  His coordination limited his balance and physical activities.  At the time he could not proficiently navigate staircases or catch a ball using both hands.  And his self awareness of these differences made PE quite uncomfortable and nerve-racking for him.  

Baker became significantly overwhelmed, specifically during unanticipated transitions and when frustrated by work or play.  He would cry and hide, not like a temper tantrum, but more like the tears shed when you are at a complete loss for words or actions.  It was time to bring a psychologist on board to help with this anxiety.  

We took Baker to one of the best psychologists in the area, specializing in pediatric anxiety, ADHD and ASD.  After observing Baker, the doctor asked if Baker had ever been evaluated for ADHD or Autism Spectrum Disorder.  He had not, though I explained with certainty that Baker did not have ASD, because he makes eye contact (usually), and he's social, and he's full of empathy, and although he speaks very slowly, he's not robotic...The list went on and on.  

That's when the doctor smiled and said, "Yeah, that's why it's Autism Spectrum Disorder."  He's the one who introduced me to the quote, "If you've met one person with Autism...". 


Sometimes, it Really Does Take Two

In that moment, I actually was not flooded with panic.  I was not nervous or worried.  Maybe the doctor was right.  But if he was, what would that change?  We already fully accepted Baker the way he was, so it wouldn't change him.  If anything it would...and did...change me.  It took TWO psychologists to get to the bottom of Baker's anxiety, attention, and sensory issues.  Independently, each psychologist came to the same conclusion.  

"Baker Christensen," one doctor wrote, "is a screening conundrum, and is the reason the writers of the DSM-5 amended the singular Autism diagnosis as one that occurs on a spectrum."  Baker was formally diagnosed with high-functioning ASD in May of last year.  But it didn't change how I see my son, rather, it increased my awareness.  But some things did change. 

Then Why The Diagnosis?

The diagnosis changed the way I quietly judged other parents at Target whose son appeared to be having a meltdown over what I assumed was something related to not getting his way.  But what if I was wrong?  What if the poor kid couldn't handle the lighting?  What if he couldn't handle the crowd?  What if there's a bump in his sock that for him feels like the equivalent to someone putting a tarantula on my shoulder and asking me to go all day and pretend there's not a furry arachnid sitting on me?  And what if the parents are at a complete loss and don't know about sensory disorders, ASD, dyspraxia, etc.?  

It changed the way I forced Baker to play along when other people would suggest he not leave the table until he ate a bite of the meat, or a spoon of the mashed potatoes.  Rather than being embarrassed by the situation or frustrated by their unwillingness to accept what I'd tried for a year to explain about sensory defensiveness and vomit on the table, I became emboldened in my role as my son's advocate.  

It changed my approach when I'd hear one of Baker's friend's greet him, and I would see him just keep walking, or when someone would hug him and he would keep his arms at his sides.  He hugs Dave and me every day, and he kisses us and tells us he loves us, but with people who don't hug him daily, it didn't come as naturally.  Before, I did not understand how this fun-loving, social child could be so aloof.  In hindsight, these are cues many of us pick up on and develop through watching others.  If, however, your brain was wired differently, you too may need direct instruction in what to do with your arms when you are hugged by someone who doesn't hug you every day.  

Is ASD an excuse for misbehavior or a poor attitude, absolutely not.  Those things are not tolerated in our home, and luckily, Baker is a pleaser.  Awareness alerts us to the concept that what absolutely is outright defiance for one child, may actually be the result of a cognitive misfire for another.  One seven year old refuses to eat his mashed potatoes out of a struggle for power.  Mine refuses to eat his mashed potatoes because the texture in his mouth tells his brain that the item he is chewing is harmful to his body, engages his gag reflex, and causes him to throw up.  It's not the same thing.  

If I put a plate of cockroaches and toenails in front of you and told you to eat it, would you?  What if you were hungry?  What if everyone else ate all of theirs?  What if I told you, "You cannot leave the table until you try a bite?"  What if I threatened to take away your toys?  

I'll tell you what I would do.  I'd be devoid of toys and sitting at that table for a long, long time.  I'd probably cry.  I might even lash out.  After all, my refusal to eat in no way indicates that I am not hungry.  No matter how much I love you, no matter how badly I'd want to comply, my brain will send every possible fight and/or flight signal to alert my body that what's on that plate should not enter my mouth.     

Because I Am Aware

I feel that, because of my personal experience with my anomaly of a child, I have a heightened awareness for how ASD operates on a spectrum.  My awareness opens the door to educate others and to continue learning.  

Because I am aware I also know...

MYTH:  Autism is on the rise.  
Autism Spectrum Disorder is not necessarily on the rise, as many would have us believe.  Rather, the amended diagnosis and inclusion of a spectrum allows for the identification of more individuals who struggle with sensory and social disturbances.  

MYTH:  ASD is caused by vaccines.  
The original author of that study actually recanted his claims.  Unfortunately this was too little, too late, as even science is not immune to the court of public opinion where the subject is guilty until proven innocent...and is still considered guilty even after that.  

MYTH:  ASD is caused by poor parenting.  
I did not cause Baker's ASD.  Sadly, another myth revolving around ASD is that of a medical belief in the 1950s that Autism was caused by "Refrigerator Mothers," those who lacked warmth toward their children and failed to meet their needs.  This belief was debunked when more studies surfaced regarding the brain chemistry of individuals with ASD, but as long as there are people who believe the world is flat and that the Mayan calendar predicts the end of time, there will be those who hold fast to the Refrigerator Mother hypothesis like a dog with a bone.  

MYTH:  Individuals with ASD don't want friends and don't feel emotion.  
People with Autism are not automatons.  Depending on the degree to which the individual is locked-in, (s)he may express a great deal of love and affection or may be unable to express his feelings at all.  The desire to love and feel loved, however, is not nullified.  

MYTH:  Individuals with ASD cannot understand the feelings of others.  
While one feature may be difficulty with social cues, many individuals with ASD can understand the feelings and emotions of others if given the time to process or if the information is clearly communicated.

MYTH:  Individuals with ASD are intellectually disabled.  
While intellectual differences may sometimes be a comorbid feature of ASD, most have average to above average IQs.  In fact some of the most ingenius and creative minds were diagnosed with (or would have been, had the diagnosis been identified at the time) ASD.  This includes names such as Mozart, Steve Jobs, Sir Isaac Newton, Thomas Jefferson, Bill Gates, Emily Dickinson, Andy Warhol, and Temple Grandin.   

Because He is Aware

Last week, when he learned why today is the day we wear blue, Baker became curious.  Of course, in true Baker fashion, he did some research.  And naturally, the question that followed was, "Daddy, do I have Autism?"  

The simple answer was, "Well, Autism is on a spectrum.  Some people, like you, have it a little bit.  Some people have it a lot.  We all have things that make us different, and that's okay.  We are all perfectly created the way God intended us to be."

For now, the simple answer is sufficient.  But it will not always be that way.  

I became aware because Baker was diagnosed.  I continue to learn because one day, he will want to know more.  

That's why, today, I wore blue.  

Love - Out of Control

Listened to a song today called Control by Tenth Avenue North. For those who don’t know the song, it’s worth a google. Anyway, the chorus says this:

God You don't need me
But somehow You want me
Oh, how You love me
Somehow that frees me
To take my hands off of my life
And the way it should go

As I listened to the chorus, I first thought...what would that look like? To let go...I mean REALLY let go, and give it to God.

Then I thought...why? Why would anyone ever give control of their life over to another?

Then I thought...when? When, in the course of human life do we EVER trust someone else fully, 100%, that whatever happens next...they’ve got control? What’s that kind of trust like?

What can I say...I ask a lot of questions...

Sometimes I answer myself too...

I’ll come back to the first question in a minute. But first...the question of control.
Why would I give that over?
Well, control not actually my possession, anyway. The way I see it I have two choices...allow myself to be guided by the Lord...or allow myself to be controlled by literally EVERYTHING ELSE. One choice results in positivity, the other in negativity. One results in faith; the other results in fear. One results in being present; the other results in future-tripping. I, however, don’t have control...but what I do have is a choice.

That being said...I’ll go back to all of the other questions I asked myself...

What would it look like to let go, and when do humans ever contain a capacity for that kind of trust?

And then I picture my children. Whom I love so much. So much. So. Much. So much that I can go from perfectly rational to certifiably insane the instant that it appears either have been or will be harmed.

I picture Dave...throwing Baker in the air when he was just a baby. HIGH in the air. It still makes me cringe. But the look on Baker’s face was pure joy. Not a worry. Not a fear. Not a moment of thought to what COULD happen...because Daddy was there. Daddy would catch him every time. Daddy wouldn’t let anything bad happen.

I picture Lucibelle, the free-est of all free spirits. Running, full speed ahead wherever she goes...which also makes for some gnarly run-ins with gravity. I see it coming, but can’t get there fast enough. Hands and knees scraped, and a busted lip...she does not first seek to determine what is hurt...she doesn’t yell at me for not catching her...she does not try to fix it herself. What does she do? She looks up, through her tears, looks for me, and cries out, “Mommy! Mommy, kiss it! Hold me. Make it better.” There is no doubt in her mind that I’ll scoop her up, hold her tight, kiss her bumps and bruises, and make it better. Not a single doubt.

It’s the purest form of trust...the trust an infant has for his/her parents. Baker, at two, was invincible in Daddy’s arms. Daddy is the strongest man in the world. Daddy can do anything. Daddy is my protector and will not let me down.

As parents we know we aren’t perfect but we sure seek to climb to the top of the pedestal our children so naturally construct for us.

Of course...then there’s God. The ultimate father. Who actually IS all of the things our babies believe US to be.

That’s what it looks like if I really believe my Father is The Great I Am. When I run headlong into a brick wall...I would look to Jesus before anything or anyone else. When I’m in an unfamiliar place, unsure of my surroundings, I’d cling more tightly, certain that although I do not know the path, He does. When I’m in a place where things could crash and burn, I’d relax and enjoy the ride, knowing that I’m totally safe in His hands.

Love is Baker

12/29/2017

Googling some verses tonight. Googled Corinthians 13:4-6, the “Love is” verses. I liked the image to the right, so I clicked on it. The title of the article was “What is Love” on a website titled “I Am Baker.”

Let that soak in? Do you have goosebumps yet?

The article suggests, as I once heard at a wedding and then stole the idea for my own wedding, to replace the word “Love” with your own name. Since we are created in God’s image, and Jesus took our shortcomings with Him on the cross...it makes sense that when He, our Father who looks on us with the same adoration as we see our own children, describes you and me...He uses these words.

It’s hard to replace Love with MY name. I miss the mark in so many places. 

But then I look at Baker. I’ve described my son as a portal into heaven...actual Heaven itself.

Perfect, he is not. But inspiring, yes...that...Every. Day. Baker’s unique approach to life...the way he perceives his world...and his spirit, clearly anchored in something I could have never *taught*...leaves me in awe.

And so when I need to pause and remember what love is...when I need an example of what it looks like...maybe I just need to remember:

Baker is patient.
Baker is kind.
Baker does not envy.
He does not boast.
He is not proud.
He is not rude.
He is not self-seeking.
He is not easily angered.
Baker keeps no record of wrongs.
He does not delight in evil.
He rejoices in the truth.
Baker always protects.
He always trusts.
He always hopes.
Baker always perseveres.
He never fails.

No, he’s not perfect. And yet, I look on my son...my little portal into heaven...with an adoration that makes me see these features in him.

God looks on His children in the same light. That’s pretty exciting news, right?