She Runs A Good Race

mothering is a marathon

Pretty On The Outside But…

IMG_4843Don’t judge us by our Christmas card. 

We look pretty perfect.  Like the quintessential all-American family.  Don’t we?

The only thing missing in the picture is our adorable, chocolate labradoodle, Gracie, with a Christmas bandana around her neck.

It’s a great picture, if I do-so-narcissistically-say-so myself, as the mother in this photogenic crew.

BUT…

Just because I know how to pull together coordinating outfits and shoes, hire a professional photographer, and put lots of make-up on and smile just right, does not a perfect family make.

You know that and I know that.

But why do we ASSUME that because “someone is cute and wears designer jeans” as Glennon Doyle Melton (momastery.com) says, “that they have it all together?”

There’s a quote that keeps getting passed around Facebook.  I love it.  It’s truth.  Listen to it:

“EVERYONE YOU MEET IS SILENTLY FIGHTING A BATTLE.  BE KIND.”

For us Patays, the obvious battle I am so vocal about is living with Ryan’s disability (Prader-Willi syndrome.)  If you have been following my blog long enough, you know how much I vomit it all out.  But of course, there’s a thousand other battles going on in our family.

And yours.

Don’t be afraid to share, to vent, to offer honest stories and struggles.

Because EVERYONE and every family has something going on in their lives that make them uncomfortable.  No one family or marriage is perfect.

Let me say that again.  No family is perfect.  Nobody is perfect. No one’s life is perfect.  No matter how “pretty” you are, with a pretty house, and pretty garden, with pretty circumstances, you all struggle with something.  We ALL do.  I know I do.

Do you have anyone in your life that you openly and freely share without any filtering and photo-shopping?

Why not be vocal?  Why not share?  Why not try vulnerability and a little transparency?

We all like to post about our food, our restaurants, our genius and athletic kids, our vacations, our homes, and our oh-so-fun social lives on Facebook.  (Ok, not EVERYONE is on FB, and a sick, serial post-er like me, but you get what I mean.)  Why not post your struggle, your weakness, your failure?  Not in a poor-me way, but in an attempt to show your humanness and connect with others in such a humbling way?  For 2014, lets all give up pretending, masking, and posturing.  Just be who you are.

Who wants to go first?  I will hold your hand.  And be non-judgmental.  I will cry, laugh, and listen, listen, listen. To your heart.  Now give it a try.

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What’s In Your Hula Hoop?

This has been reposted from another place I write.  Worth re-posting.  

Whenever Ryan has a horrific tantrum, especially in public, I feel a sick wave inside. Internally and immediately, I ask myself,

“What will this look like when he’s 13? 18? 28?”

I feel panic and fear.  All the while, I’m utilizing my tantrum-reaction strategies and trying to appear calm and cool.  When the tantrum is over, Ryan moves on but yet I am reeling inside.  I’m left with the “oh-my-gosh-HOW-will-I-handle-this-when-he’s-older-bigger-louder-stronger” questions.

Why do I put myself on this futuristic rollercoaster?  Whenever that “wave” hits, I fast-forward and start projecting how HARD it will be.  I automatically assume it’s going to become intensely challenging as the years go on in Ryan’s journey with Prader-Willi syndrome.  It is certainly not going to get easier.  None of the symptoms or behaviors goes away as children age.  They don’t “grow out” of any of it.  (Darn…Too bad there isn’t a special needs fairy that grants every family one wish to remove one aspect of their child’s disability.)  My perception of my future with PWS is its scary, intense, stressful, and possibly unmanageable.  As I write this, even my adrenals are firing and my heart is racing like I just ate a handful of espresso beans!

As I was sharing, (ok, really venting and complaining), with a true-blue girlfriend about my current wave, she short-circuited me with a question.

Friend:  Jess, what is in your hula-hoop?

Me:  What?

Friend:  What can you hold in a hula-hoop?

So I then walked outside to pick up my daughter Kate’s silver sparkly hula-hoop.  I put it around my waist.  Literally.  Its 27 inches in diameter. And with me inside of it, it does not leave much room.

The message my girlfriend was trying to get into my fearful, worry-wart head was that I need to focus on today, this week, or at best, just this moment.  All I have permission to think, feel, and worry about is what I can fit into my hula-hoop.  THAT’S IT AND NO MORE.

A huge struggle in special needs parenthood-dom is to let our hopes for our children outweigh our worries and our fears.  The future will be the future.  I cannot control it or change it or make it infinitely better by freaking out now.  I am only doing my marriage, my family, and myself a giant disservice by ruminating about what life will look like when Ryan becomes a teenager or adult.

Now where’s that hula-hoop?

Picture from troubadourshow.com

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A Mama’s Gotta Dream

“ No matter our age or condition, there are still untapped possibilities within us and new beauty waiting to be born.”

–Dale Turner

If I were to sit down with you, fellow mama, with a cup of coffee in a cozy café, and ask you, “What is your calling—what would you say to me???

What do you feel your PURPOSE in life is?

What are you passionate about?  What makes you feel alive?

What are your dreams, that you may have buried long ago when diapers and infant seats entered your world?

Do you dare to ask yourself these questions?  EVER?  And why not?

Do you have trouble answering them? For what reason?

I don’t mean this to be an interrogation, no, not really.  I am firing these questions at you because I fear that mothers do not give themselves permission to dream dreams; to prayerfully fantasize of things they’d love to do outside their roles as wife and mother.  Notice I said ROLES, not calling.

I have always hungered for more than my wife & mother roles gave me.   I have friends and family who are D-E-V-O-T-E-D wives to their husbands and uber-moms to their children. I’m in awe, and frankly feel guilty that I may not be in love with my mom hat some days, as I see, or perceive rather, in others.  I feel guilty about the tugging’s and the passions that take time and energy away from family.  And then I remember, oh, yes, this was how I was created.  These are God-given desires and dreams.  It’s certainly up to me to keep my priorities in line, and keep family first.  But first does not mean ONLY.

While I encourage you to ask yourself these questions mentioned above, I recognize that stage of life and ages of children (or aging parents), and full-time jobs are real factors.  I have always loved words and wanted to pursue writing.  Now that my 3 kids are in school 8:30 to 3 pm, five days a week, I finally committed to it as a regular discipline and habit. Its wayyyy easier to find the time.

I realize that when you are in the pregnant-breastfeeding-baby-toddler-pre-school phase, ESPECIALLY when there is more than one cutie pie involved, is probably not the time to pick up your dreams and GO BIG.  (But who am I to put you in a box?)

I do believe there is a time coming though, mamacitas, when you MUST ask yourself, you must answer, and you must make a bold statement to yourself, to God, to your husband, your best friends…

“I AM  ________________________” (you fill in the blank)

  • A writer
  • An artist
  • A photographer
  • An entrepreneur
  • An encourager to moms
  • A mentor
  • A marathon runner
  • A designer
  • An adventure lover
  • A chef
  • A traveller
  • A baker
  • A nurse
  • A gift-giver/philanthropist
  • A prayer-warrior for others
  • A coach
  • A personal trainer
  • An inspirational speaker
  • A gatherer of women/mothers/girlfriends
  • A teacher

A mama’s gotta dream.  Someday.  I hope it’s soon for you.  I hope you will give yourself permission to ask, answer, and well in the good words of NIKE, ‘just do it.”

There is beauty waiting to be born in you…so that others may be richly blessed by it.

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 Black Toenails

Runner Silhouette“I am your mother, the first mile of your road.”  –Kelly Corrigan 

 

I run a marathon every week. 

Actually, my life is an ongoing marathon.

And so is yours, especially if you have a child with a disability, or any type of ongoing medical or special need.  As a parent of a child with Prader-Willi syndrome, I put in miles upon miles as I expend so much of my physical, emotional, and mental energy weekly, sometimes daily.  The tenacious spirit, perseverance, and endurance that is required to train for and run a 26.2 mile-marathon is what is required of you and me.

I crossed the “starting line” of my marathon when I first “knew something was wrong” with my infant baby Ryan.  Although your marathon and mine doesn’t quite have a finish line, we do have mile markers.  Our children have mile markers and so do we, and sometimes the difference between the two are completely blurred.

Some of Ryan’s past mile markers were when his G-tube was removed at age 11 months, and I could give him a bottle only.  No more carrying around the IV pole, tubes, and syringes, along with formula and bottled water.  His lips, tongue, mouth and jaw were finally strong enough to take in the milk and baby food his low-tone body needed.  Another famous mile marker was Christmas Eve, 2005, when Ryan, at age 2 ½, was able to stand up, take Chris’ and my hands, and walk from the family room to the dining room.  5 seconds of pure bliss.  The crowd (my family) hooted and hollered from the sidelines with tears falling out of their eyes.

Since then there have been other mile markers like Ryan recognizing his printed name, and subsequently learning to write his name.  Despite how terribly he grasps a pencil, we celebrate he can write his name.  Finally.  And someday he will be able to actually read and fully understand the books he obsessively looks through for hours at a time.

As Ryan accomplishes his mile markers, they feel like my own.  Because I was the one who was watching and waiting, teaching and coaching, hoping and praying, that with each baby step of progress, he would reach his finish line.  One of a thousand finish lines yet to be crossed.

As a mother of a child with PWS, I have my own personal mile markers:  1) Getting through a day without losing my patience over Ryan’s incessant questions; 2) Establishing a strong behavior program at school; 3) Resolving marital issues to maintain a close, unified relationship with Chris, despite our stress levels; 4) A proud moment when I’ve chosen to remain quiet and composed when I want to scream at Ryan (or any of my kids…). And for me, I too, have many finish lines yet to be crossed.

Runners feel like they are in a special universal club of runners. When we pass each other on the street during a run, we nod our heads, make eye contact, smile, say hello, wave, or any other friendly gesture.  “We know in our know-ers” how incredible it feels to run, to hit the pavement, to sweat and hurt, and to accomplish mile after mile.

Well, parents of children with special needs are also in a universal club.  Together.  We know the heartache and the blessing.  We know the triumphs and challenges.  We know the hurt, sore muscles, and black toenails of our ongoing marathons.  When I pass another parent with a disabled child, I always try to make eye contact and smile.  They have their unique marathon and I have mine.

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