She Runs A Good Race

mothering is a marathon

If I Can Run, ANYBODY Can

Real runners don’t care if they wear matchy-matchy outfits when they run. 

Real runners run in the rain. Or wind. Or heat. Or snow. They just gotta run.

Real runners run in the street, despite the sidewalk on their route.  Real runners run even if it means the run begins and ends in the darkness and cold of the early morning.

Real runners have a love affair with their running shoe label and become fiercely loyal to their chosen brand and type.  Real runners don’t care if they have that funny ankle-sock-tan-line all year round, not even in summer sandal season.

Real runners focus on their own PR (personal record), not anyone else’s.

Real runners know the incredible exhilaration and elation of finishing a big race, and not necessarily winning the race.

I am a real runner today, but I did not start out that way. I did not start out in childhood doing “fun runs” and community 5ks.  I hated running as a kid. You could not have paid me to run.

In college I was forced to run.  I was forced to run by my very conservative college’s 3-mile running proficiency requirement.  Every student, in pursuit of “the whole man concept” (or woman, ahem) was required to take a physical activity class each semester AND pass a 3-mile proficiency test.  We were actually graded on our time.

I didn’t know diddly-do about running except you move forward around a track, round and round.  In fact, my bright white, high-top, 80’s aerobics-class shoes doubled as my running shoes.  (I am mortified at this admission.)

I used to run on my toes without any knowledge of it.  UNTIL one day Snotty Blond Athletic Girl behind me whispered to her Girl Jock friend, “Look, she runs on her toes.”  From then on, I stared at others’ form and tried to imitate them.  No more bouncing.  No more toe running.  Still the same shoes.

I preferred running indoors instead of fighting the Oklahoma elements of humidity, cold and rain.  This California-born-and-bred girl did not know what to do with real weather.  Each lap on the university indoor track gave me the false sense that I was putting in so many miles.  I learned later that each lap was 1/6 of a mile, but by that point it didn’t matter.  By that point I was hooked and determined to keep at it.

There was something about running that made me feel alive and strong. I was not fast, but still felt athletic.  To feel athletic was a new and empowering feeling for me, the one who was always the last one picked for every team as a girl in grade school.   I was reborn.

I “crashed” my first post-college road race in order to forgo paying the entry fee.  (I didn’t know that real runners never crash a race. Major party foul!) My very first 10k I ran in my fashionable aerobics-class shoes.  Why hadn’t anyone informed me that I needed good shoes, the real deal, the ugly-striped athletic sneakers that soon I would fall in love with?  One day it all finally clicked.  Maybe it took that long for the endorphins to kick in.

What did it for me?

What turned me from a reluctant, ignorant toe-bouncing runner to a self-motivated, outdoor distance runner with REAL RUNNING SHOES, my beloved ASICS?  I attribute my transformation to the passage of time, two people (a best-friend-runner-girl, and a boyfriend who would become my husband), and an inborn sense of tenacity.

I discovered a new sense of “I Can-Do-It-ness” in me as I took on a physical challenge that I thought was IMPOSSIBLE for ME to do, the non-athletic, non-sports-playing girl.  And if God could enable me to take on this incredible challenge and accomplish it, WHAT ELSE could I do? It became my new mantra.

Fast forward 20 years and I’ve run one full marathon (pre-kids), 8 half marathons, and one overnight 200-mile relay. I have led running groups and passed the addiction on to other women.

If I can run, anybody can.

I am not fast, but I run.  I am not competitive, but I run.  I start, and I finish. For the girl who was always picked LAST, it feels quite amazing to complete a long training run or cross that finish line.  If I can run, you can too.

 

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When I Became A Grown-Up

I became a grown-up when I was 9 years old and tried cigarettes for the first time.  It was July of 1979, Southern California summertime.  My sister and I were enjoying our break from private school.  Apparently the babysitter was on vacation, too.  In my Ditto shorts and rainbow top I watched myself in the full-length mirror glued to my bedroom door.  I looked so chic as I tried to make rings of smoke come out of my mouth like I’d seen on Charlie’s Angels.   My sister and neighbor friend were in on this grown-up experimentation with the Merits stolen from my mom’s carton in the laundry room.  The three of us were quite taken with ourselves.  Thankfully my idea of what was chic changed each year and cigarettes didn’t stick.  Mom never knew.  Or at least she pretended not to notice heavy rose-scented perfume masking the smoky odors.

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I became a grown-up when I bought my second car, a used 1986 black Honda Prelude.  (I knew I was not quite a grown–up with my first car.  I was 18 years old and learned the hard way that regular oil changes are not optional, and subsequently ruined the engine.)  My Honda had power steering, power windows, and can you believe it, a sunroof!  As I drove it to my first post-college job, I anticipated changing the world, one person at a time, with my shiny new psychology degree.  The shine soon lost its glare. As a “psychiatric assistant” in an unlocked psychiatric hospital and rehab facility in Orange County, I was required to transfer urine samples here and there and sit in during male doctors’ physical exams of female patients.  Patients who were either drunk or angry in their detoxification phase and not too thrilled to have a spring chicken sitting there.  However, it was not a completely fruitless position as my worldview opened up about the trials and sufferings others endured.  My little Honda took me back and forth to my first real job in Orange County, exposing me into the lives of women, men and young people in need of intervention, and who were humbly and bravely willing to seek it out.

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I became a grown-up the moment I was wheeled to the parking lot curb of Little Company of Mary Hospital after my first child, Luke, was born.  It was time to leave the bubble of care and extraordinary help from wonderful nurses (and a few not quite so…), and go home.  Didn’t “they” know I wasn’t old enough, at age 30, to take care of this beautiful boy?  This newborn who had the cutest upturned nose and full lips, but who screamed a lot, peed on me, and had his days and nights mixed up?  This precious newborn who was kicked out of the hospital nursery because he was too loud?  Didn’t “they” know that I had never changed a diaper before this day and that I was scared to death of having poop on my hands?  At the same time that I rose from the wheelchair to get into my car, ever so slowly (ouch!) and with all those fears, I was in absolute mush over my Luke.  Luke Christopher, seven pounds of sweetness, and full of the intoxicating newborn scent only mothers love, and miss, after it is long gone.

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The grown-up pendulum swung hard and far when my second child, Ryan, was born in the summer of 2003.  He was very weak at birth. He didn’t cry for food.  In fact, he didn’t cry at all.  I will never forget the night a few weeks later when we received THE PHONECALL from our very kind pediatrician.  He confirmed that Ryan has a rare genetic disorder, Prader-Willi syndrome, with a lifetime of challenges ahead.  I ran to my bedroom where Ryan lay peacefully asleep on my bed and scooped him up into my arms.  At that moment my world completely shifted on its axis.

I knew that Ryan had been given to us because we were able to love and care, and fight for him like warriors in a long battle.  We were grown-up enough.

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The following year I became a grown-up when my mother was diagnosed with terminal lung cancer.  It was summertime again.  With the help of my sisters, natural caregivers both, and the unwavering support of my husband, we moved Mom into our home to care for her.  The angelic nurses from hospice came to journey with us and make her comfortable.  My mom, or “Grammy” to her grandchildren, became Ryan’s roommate that summer.  Each morning they greeted me with sweet smiles, Ryan’s chubby hands on his crib, mom’s long bony fingers holding the hospital bed.  Having graciously accepted her prognosis, truly without anger and bitterness, she awaited Heaven.  We said goodbye to her September 12, 2004.  A professor in college once said to me, “You never fully grow up till you lose a parent.”  I understand that now.

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With each year, each crisis, and each celebration I feel like I’ve finally become a grown up.  But then another life lesson comes along reminding me that I’m still learning, stretching, evolving, and becoming.  I’m not really a grown-up.  But I’ll finally become one someday.  Maybe next summer.

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I Will NEVER Drive a Mini-Van, and Other Stupid Things I Said Before I Had 3 Kids

I will never yell at my kids.

I will never be one of those moms.

I will never bribe my kids to invite good behavior.

I will never let the TV be the babysitter.

I will never drive a mini-van.  (I’m too cool for that.) 

I will never let my kids eat at Taco Bell.

I will never let my kids talk back to me.

I will never have kids that jump on other people’s furniture.

I will never be one of those moms who doesn’t let their kids paint and do artsy stuff because I don’t want the house to get messy.

I will never yell at my kids.

I will never, ever give in to a tantrum. (This is mostly true.)

I will never care if they are dressed appropriately in matching clothes.

I will never allow my kids to watch Sponge Bob Square Pants or Power Rangers.

I will never fight with my husband in front of the kids.

I will never nag my husband in front of the kids.

I will never model slamming doors when I’m upset or frustrated.

I will never serve eggs or cereal for dinner.

I will never be the mom who is a germa-phobe and mess-a-phobe.  (I carry wipes in my purse and car at all times.)

My mother always said, “NEVER SAY NEVER.”  She was right. Again.

 

 

 

 

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Ryan’s Birth Story (Part 3)


THE NEW DIAGNOSIS

5 weeks old

THE phone call

Dr. Flores’ words

Chris took call

Results were positive

Prader-Willi syndrome

A lifelong disability

Life-threatening illness

Scoop up Ryan

Hold my baby

Cry many cries

Chris and me

Bonded so closely

A new journey

A new family

Luke, Luke, Luke

How to cope

What is next?

PWCF Director calls

A mentor mom

A support group

Appointment with expert

Appointment with geneticist

Appointment with urologist

Specialists, specialists, specialists

Growth Hormone Therapy

Shots every night

New OT Sara

New PT Rosemary

Therapists every day

Lots of exercises

Get stronger Ryan

Wake up mouth

Wake up body

Please wake up

I will never forget the night our pediatrician called to tell us THE NEWS. We had been home with Ryan for a week or so. The phone rang and the caller ID told us it was the doctor. The answer. The future.

Chris told me when he hung up with sad, soulful eyes, “It’s a YES.”

I ran to our bedroom where Ryan was sleeping peacefully on our bed, and quickly scooped him up in my arms.  I said,” I will take care of you, I will take care of you…” Over and over I said it as the tears fell onto his baby blue sleeper.

Chris immediately called and left a message with the PWSA (USA), the national organization based in Florida for Prader-Willi syndrome. We received a phone call back the very next day from Lisa, my new “mentor mom,” from the Prader-Willi California Foundation (PWCF).

Her message to us was, “Congratulations on the birth of your new son, Ryan.”  She did not say, “Oh, I’m so sorry about your son and please call me back.” There was warmth and help and support waiting in the wings for us. We soon found out that Lisa lived 10 minutes away from our home.  This was one of many signs that God was taking of us in the midst of this unthinkable crisis.

When I was finally brave enough and strong enough to read about PWS, this is what I read:

  • rare genetic disorder, a spectrum disorder
  • occurs in 1 to 12,00 to 15,000
  • chromosome 15 affected
  • lifelong, life-threatening illness
  • symptoms include hyperphagia/excessive eating (WHAT?)
  • behavior issues
  • social issues
  • medical issues
  • parents and caregivers experience some of the highest levels of stress
If my emotions were in complete charge, they would have screamed,”How is a mother supposed to deal with the fact that her precious baby is destined to become morbidly obese, mentally-challenged, lonely, and die early?!!!!”
But thankfully, by the grace of God, and a supportive, wise husband, my emotions did not get the best of me.  Together, Chris and I went into high gear to do all that we could and should for Ryan.

The specialist appointments began. Endocrinologist. Geneticist. Urologist. Pulmonologist. A new OT started coming to our house, another ANGEL, named Sara.  A new PT (physical therapist) started coming when Ryan was two months old.

Ryan began receiving growth hormone (GH) nightly when he was 10 weeks of age. We had to give him a shot EVERY NIGHT (and for the rest of his life) to help him gain lean muscle mass, become taller, and help increase his body’s growth hormone levels. (Can you imagine how thick-skinned again we had to become to deliver shots to Ryan’s little body…every night?!)

And so our new and unique journey began…

We were “special needs parents.” We had a son with “special needs.” An entire new world just opened up for us.  We were about to meet some amazing families in the PWS world and the special needs world at large.

We humbly told all our family and friends about Ryan’s diagnosis.  From the start, we embraced our new life with Ryan, adopted a very open attitude, and shared our story freely.  We told ourselves, “We are not going to shy away, pretend it does not exist, or alienate others from helping us/supporting us/loving on us, by keeping it a secret to ourselves.”

We accepted quickly that we would need help, lots of help, throughout our journey with Ryan and Prader-Willi syndrome. We were bonded together, we had our faith and family, we could confidently take baby step after baby step. And we did. We still do.

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Ryan’s Birth Story (Part 2)


THE PEDIATRIC WARD

Only few days

Actually few weeks

Gavage tube feedings

Pumping breast milk

All the time

OT trains me

OT is angel

More tests run

Prader-Willi syndrome?

Doctors think not

First test negative

Second test run

Luke with Dad

Luke needs Mom

Lots of visitors

Lots of gifts

So much support

Prayer, love, care

Amazing kindnesses shown

Ryan can’t nurse

Still can’t suck

NG tube feedings

Nurses who care

Nurses who teach

Nurses who love

I love nurses

Sometimes he’s awake

Sometimes more alert

Still precious baby

Surgery is possible

Surgery is scheduled

G tube in

Lets go home

Home please home

I lived for 27 days in Little Company of Mary Hospital with Ryan. It felt like an eternity to me.  Waiting and watching. Questions and no answers.

The doctors offered theories as to why Ryan was struggling and weak.  Maybe I got a virus when I was pregnant, and in 6 months he will be “normal?”  Maybe he was premature and the dates were off? I knew they were not!  Maybe he was SGA—small for his gestational age and eventually he would get bigger and stronger?

On Day 4, in walked Camille, Ryan’s new occupational therapist (OT).  She was an angel. I think she floated in. She was this petite, Italian woman with dark hair and a big smile.  She was given to Ryan, to us.  Her job was to do exercises with Ryan’s lips, cheeks, mouth, and jaw in order to strengthen them to be able to suck. I grew in appreciation for the infinite number of things that must take place for a baby to be able to suck, a basic function of a newborn’s life.

As Camille pointed out to me that what Ryan’s body was NOT doing and what it SHOULD be doing, I lost it. I could not be strong mama anymore and suck it in. My baby was broken.  This was when I first heard the term “hypotonia” which means low muscle tone. Hypotonia would become synonymous with Ryan as I explained his condition to EVERYONE.

I quickly had to give up the idea of ever being able to nurse Ryan.  I made peace with it. I had to.  I was a mom already, so I knew that bonding with my child went way beyond nursing. It did and it does.  Camille reassured me of that.

The floodgates of love and support came raining down on us during this very difficult time. Gifts, food, calls, cards, prayers, babysitting.  Visits from family, friends, new friends, old friends, pastors.  Ryan was the first baby born in the new church we were a part of.  Our new family there treated us with the utmost kindness and care. And they hardly knew us.

My best friend even flew into town to SLEEP in the hospital bed for me so I could be at home with Chris and Luke for a night. The next morning as we were driving back to the hospital, Luke,age 2,  asked, “Do you really have to go back, Mama?” More tears. His tears. My tears.

Chris diagnosed Ryan with PRADER-WILLI SYNDROME.

He had been searching the glorious world wide web and found it.  Ryan’s hypotonia, undescended testicles, and “failure to thrive” all directed to this diagnosis. But the doctors didn’t think he “looked’ like a baby with PWS. Chris asked for him to be tested anyways.  The first test was negative. Chris insisted they run the second test, a DNA test. We needed a definitive answer.

Ryan’s little mouth was not getting stronger.  We needed to go home.  Luke needed me.  Chris needed to go back to work.  We needed to start our new life as parents to two delicious little boys.  It was advised, absolutely necessary really, to give Ryan a “G-tube,” a feeding tube.  Surgery was scheduled.  Chris and I learned how to feed Ryan carefully.  The nurses were extraordinary to our family throughout our stay, but they knew it was time, too.

Home please home.  Yes, we were finally released  to go home. But we still had no answers…

FOR MORE INFORMATION ON PRADER-WILLI SYNDROME, PLEASE GO TO http://www.pwcf.org/pages/Body.htm


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Ryan’s Birth Story (Part 1)

JUNE 27, 2003

It’s a girl

No, no ,no

It’s a boy

Ryan Bradley Patay

He doesn’t cry

Boy parts wrong

He doesn’t eat

He can’t suck

Mom, Dad happy

Mom, Dad worried

So many tests

Don’t have diagnosis

Transferred to “Peds”

Mom with Ryan

In walks Camille

Camille the OT

I break down

Tears, worries, tears

What is happening

Why why why

Something’s very wrong

My baby’s broken

No one knows

No answers yet

Poor Baby Ryan

And poor me

He didn’t cry.  Hardly at all. Ever.  Ryan didn’t cry pretty much his whole first year of life.

When Ryan first came out of my body after two pushes and a picture-perfect delivery, and a picture-perfect pregnancy, mind you, what struck me was he let out barely a cry.  I thought I won the lottery and got an “easy baby,” a mellow newborn.  This was quite a change from Luke,  who got kicked out of the nursery as a newborn because he had his days and nights mixed up, and my darn nurse was not too forgiving about that.

The other striking issue at the moment of birth was that his testicles were not descended.  Both. Not just one, which is very common, my mother reassured me. I thought, “hmm???”  but really was not freaked out.  His respiration rate was high but otherwise he seemed perfect and tiny and beautiful to me. I was in love with my second son. Ryan Bradley Patay, his middle name given to him from Chris’ twin brother and best friend.

The first 24 hours for me was a little bit of a blur of post partum joy and some concern but not all out worry about my newborn.  NOT until the doctors and nurses said a bunch of tests needed to be run.  They ordered an ultrasound of his abdomen “to rule out if he had a uterus,” (WHAT??) and a brain scan and lots of blood tests.  That was Day 2.

Ryan was not waking or crying for food, nor could he suck very well. Day 1 this didn’t stand out to me–again, I thought I had a mellow, sleepy newborn. But by Day 2, the nurses got more insistent I try waking him and stirring him,  try a bottle of formula and see if he could take an ounce, even a sip.  He could not.

Next they told me I would be discharged and Ryan would not. Because he was showing a “failure to thrive” ( a term new to me), he would go to the Pediatric Ward (“Peds”) for a few days.  He was to have some tube feedings, and work with an OT (occupational therapist) to wake up Ryan’s mouth. Just a few days, right? And then we could go home??

This was not the case I would soon discover…

FOR MORE INFORMATION ON PRADER-WILLI SYNDROME, PLEASE GO TO http://www.pwcf.org/pages/Body.htm


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Because I Deserve It, Right? Hmm…

As I checked my inbox of email one morning, all the retailers notifying me of 30% off deals, all stated in bold caps “YOU DESERVE IT.”

And depending on the day or week I’ve had, or the season of life I’m in, I just may choose to agree. 

Inside I may say “OH, YES I DO!” and start click-clicking away and fill up my cyber-shopping cart with lots of goodies.

It is so easy to get into the mentality as a mom, that because I work so hard, because I work 24/7, because this maternal hat squeezes my head daily, that I deserve…. (You fill in the blank for what your vice, escape, or your want-disguised-as-need is.) We moms could get together and have whole parties over this and fully justify it and rationalize it.

But something’s not right.  Deep inside this does not sit right in my soul.  As I go on year 12 of being a mother, I see how selfish I am.  Really.  I want to be different, more giving of myself, especially of my time, which I hoard, hoard, and hoard.  I hoard it Because I Deserve It.

  • I deserve to exercise 5-6 days a week.
  • I deserve mommy breaks to get a pedicure or lunch with a sweet girlfriend.
  • And yes, I deserve another pair of shoes.

Hmm…

Now I’m not saying that I, or any mother should turn into martyr-mom with no boundaries, and do everything for everyone and never take care of themselves. There are some moms who swing to this other side of the pendulum, which can be dangerous and detrimental although it may appear altruistic and selfless.   If I don’t take breaks, have date nights, girls’ nights, and make healthy choices for myself, then I am headed for a serious breakdown and major mommy revolt!

What I am striving for is a heart and attitude of giving to my family and community cheerfully.  To look for ways to reach out, and get out of my proverbial, comfortable box.  To give personal touches, to be generous, and to help those in need. (I must knock on my elderly neighbor’s door today.)

What I am striving for is to NOT be irritated by my little people’s needs (or my husband’s, lets be real here…) or interruptions while I’m cleaning, working on a “project,” emailing or reading or…you get the idea.

To be happily willing to stop, look at them in the eye and say, with true sincerity, “What is it, honey?”  Because, they are more important than my never-ending to-do list!!

If I am supposed to be an example of God’s amazing love and care to my children—

If I am to be modeling selflessness and generosity—

I can’t be all consumed with my to-do’s, my wants, my, and mine.  Not if I stay in my own little wrapped up world where my schedule is about me and what I deserve.  To say to my kids and husband, “You are worth my time,” is a powerful message.  It feeds their souls.  For a lifetime.

And THEY deserve it.  They deserve the best of me.

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