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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The Burn

UnknownI’m going to burn up this year. 

My favorite Equinox instructor (and my friend), Rebecca, always tells us, when we are dying in her hard-core fitness classes, that the burn means that change is happening in our bodies.  We want that burn.  We need that burn.  Even if we are screaming and whining like little girls on the inside.

She always reminds us we can do it and to just push through the burn and DO. NOT. GIVE. UP.  Embrace it, when what you really want to do is stop, quit, and take a sip of water.

Every time Rebecca says this, it speaks a life-metaphor to my soul.

Right now we are in a particularly challenging new phase with Ryan.  Symptoms of PWS are popping up in intensity, frequency, and severity.  And may I just say for the record that Prader-Willi syndrome is from the pit of hell!  I will stop there, before I begin to rant and rave.

In this new season of high anxiety for Ryan is high anxiety for us.  All of us.  We “walk on eggshells” as they say so as not to set him off, and then be forced to deal with crying, perseverating, and tantruming.  His food drive, (what makes the syndrome famous or newsworthy) is kicking in and I must be more vigilant and watchful at parties and restaurants, so that he doesn’t overeat.  Overeating in PWS is harmful and life-threatening.  It’s not just like if you or I overeat at a meal and feel uncomfortable, and our stomachs pooch out all prego-style.  (For more information on PWS, please visit the website pwcf.org.)

Throughout the 10 ½ years we have raised Ryan, I have come to describe in different ways how it affects ME personally:

“It comes in waves.  The stress, the pressures, the appointments…there is an ebb and flow.”

“It’s like living with chronic grief, deep below the surface, but always there.”

“I am NOT grateful for having a disabled son, but I AM grateful for how my soul and heart have expanded as a result of our journey.”

And on a completely maddening and exhausting day:

“F— this syndrome and how it tortures my son and the rest of us!!”

It’s January 2014 and I am burning.  My emotions, my thoughts, and my heart are on fire, as we deal with new behaviors or more intense behaviors.

I have a choice.  To just get flipping angry or have pity parties or give up and use some form of escape to numb the pain and stress of it all.

OR—I can remind myself that this BURN means that changes can happen in me.

Changes like practicing and experiencing gratitude in the midst of hardship and grief.  Changes in the form of implementing new methods to manage Ryan’s behavior.  Changes in my attitude and perspective.

I will embrace the burn in this new year and phase with Ryan/PWS, and therefore embrace the changes I desire for my soul.  That God desires for my soul, my family, and home-life.

Painful? Yes.  Easy? No way.  But like I do in Rebecca’s classes, I will close my eyes, breathe deeply, and pray through the burn.  I will remember that I CAN DO THIS.  And I won’t give up or give in.

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