She Runs A Good Race

mothering is a marathon

The Burn

on January 5, 2014

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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10 responses to “The Burn

  1. Liz says:

    Beautiful as always. Happy new year. Know that we are all here walking this journey together. XO Liz

  2. Carol says:

    We are with you, Jessica. I tell people the same things about our situation. Under the surface, we are always profoundly sad. I am not sorry for me. My son is a gift who has made me a better, stronger, more purpose-filled person. I am sorry for him because he deserves everything good in this life. But I try to find strength knowing that he has love and other advantages that so many other children, of all kinds, lack.

    Hang in there. There will always be new challenges. But with love and resolve, you and your family will continue to find the way.

  3. Kirsten Hanson says:

    Hi Jess,

    I want to say ” great post!” But that just doesn’t seem appropriate or enough when you’ve poured out your heart and soul and given us readers and friends a window into your struggles. You have the gift of expressing so clearly and succinctly what is going on in the inside. Love you, appreciate you and have a huge amount of respect for you Jess and… I love Ryan. Thank you for your candor and your grit.

    Love, love , love, Kirsten

    Sent from my iPhone

  4. Suzie Lind says:

    There is power in this lesson for all of us Jess. Thank you for letting us in.

  5. Liz and Carol, I am so thankful that you are my sisters in this journey. Just being together at a moms’ dinner out fills me up. Knowing we all have our own unique struggles but shared grief binds us together with so much love and support.

  6. Kirsten, I only know how to be completely candid and raw with all this. No sugar coating possible in my life….I know how much you all love Ryan. And how much he loves you all, “the Handsomes!” I thank you for your care and deep friendship all these years.

  7. And Suzie, I learn so much from YOU my friend, and your gifts of wisdom and writing. THank you for encouraging me forward.

  8. adexoxox says:

    Friend, I wished we lived closer, not because I think I could fix it, but to help carry the load. I love you! You are one strong lady, an inspiration of how to push through the burn! xoxox

  9. Adrienne, wish you loved closer too girl!!! xoxox

  10. Christal says:

    It gets better or it can get better! My younger brother Jon is 45 years old. He was not diagnosed with PW until he was around 10 years of age. He has lived in his own apartment with assistance for the past 15 years. He goes to work, enjoys going to the movies and is much loved by his friends and family! Feel free to email me at windveilblue65@gmail.com .

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