She Runs A Good Race

mothering is a marathon

 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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Why The World Needs My New “Mom Blog”

Because I love being a mother.

Because there are days that I don’t.

Because I’m not a perfect mother, and will never pretend that I am.

Because mothering IS an ongoing marathon week after week.

Because I have Luke, Ryan, and Kate filling me up with ideas for blog posts and yet I had no blog.  Till now that is.

Because I am real, raw, and honest.

Because I’m a mom who has more to say then “clean your room,” “please get in the car now,” or any other directives I spout out daily.

Because I have  a real need to share who I am and what I think, feel, experience, and observe as a mom.

Because I am a wife, mother, daughter, girlfriend, runner, and writer. I celebrate all these parts of me and you should be celebrated too.

Because I wear a special needs mom hat for my son Ryan, who was born with Prader-Willi syndrome, a rare genetic disorder.

Because I love to be inspired and hope to inspire other moms and women.

Because I dislike doing arts and crafts and science experiments, and I’m not afraid to admit it.

Because I promise to never act like my children are perfect, or my house is perfect, or my life is perfect.

Because I feel called to write. I always have. Since I was in 2nd grade.  And God keeps putting people in my path to ask me, “Have you started a blog yet?”

Because mothers need other mothers, just like girlfriends need girlfriends.  Badly. Wonderfully. Amazingly. Happily.

Because I finally got the darn courage to do this and it will be so cathartic for my heart.

Because my prayer is that this will be good for your heart as well.

So here I go…

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