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.


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 ( 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:


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.


Chop Chop

ImageAll I wanted was a fresh, sassy haircut.  Not the sassy-pants visceral responses from my beloved children.

I bravely chopped off my A-line bob, which I had been calling the “mom-bob”.   I say bravely, because I am surrounded by women with long to very long locks of flowing, or wavy, or stick straight hair.  But still long.  I was blessed with very fine hair, and have had shorter hair most of my adult life.  Chris met and married me with short hair, thank God, and has never imposed any sort of  “you must have long hair to be beautiful” nonsense.

Of course, I didn’t chop it; my forever-hair-stylist-Dave did.  I had been salivating over short-short cuts for a year.  Looking through fashion magazines and watching Red Carpet shows only fueled my desire.  And then, Michelle Williams ruined me.  The talented actress is photographed in the Louis Vitton campaign.  I was undone.  I was ready.  Almost fearless.  And my husband was ready.  Well, sort of.

Snip, snip, a little color and 100 minutes later in Champions Salon, I was new.

However, silly and superficial, a fresh look feels invigorating.  My mom used to say to me that my face came alive with short-short hair, and I felt that way.  Inside too.

I kept looking in my rearview mirror the whole way home.  Sunglasses on, sunglasses off.  Berry lips.  Smile.  No smile.  Ya know.  The girlie-girl stuff.  I was a really safe driver.

THEN, snapped into after-school reality, I arrived home.  And when my three darling children all saw the new me, they CHOPPED me up with their responses.  Oh so many responses and opinions!  At first, one of my littles wouldn’t even look at me.  I will keep it anonymous who said what, but here is the life-giving feedback I received:

  • Where did it go”
  • Are you getting your hair back?
  • Are you going to be bald?
  • If you start wearing skull jewelry, Mom, you could go all Goth.
  • It’s REALLLY short, Mom.  You kinda look like a boy.
  • When are you growing it back? Soon?
  • I mean, its ok, its not my favorite.  You don’t look like my mom.
  • Now you can dress up like Pink for Halloween.

Wow.  Even our dog, Gracie, looked at me sideways and seemed to wonder if it was me.

Sheesh.  Good thing I have thick skin, a strong mind and a sense of humor.  These remarks come on the tail of my daughter Kate saying to me in what I thought was a sweet goodbye moment before school, until….”You have too much eyeshadow on, Mom.”  Ouch.

Kids are so unfiltered and honest.  I love what spills out of their minds and hearts so freely.

I tried to humor them and get us all moving into our after-school routine of snack, homework, chores and then dinner. But to no avail.  The energy was all aflutter and we were out of sync.  I was stupidly and vainly distracted with trying to take THE PERFECT PICTURE to post on Facebook and Instagram.  I knew my peeps there would cheer me on with emoticons and love despite my children’s frowny faces.

As I sat in the salon yesterday, looking amazing with foils all over my head, I thought, it’s too bad heart and soul transformations aren’t as fast and painless as hair transformations.  But that is definitely a post for another day…

Excuse me now, while I go play with my hair.  😉


Cigarette Girl

images-1It was summer.  1979.  I just finished 3rd grade with a wonderful teacher, Mrs. Finefield.  I was nine.  I wore the Rainbow Shirt. You know that shirt that had the rainbow splashed from left arm, across the chest and onto the right arm?  Super groovy.

I was a child.  And I smoked all summer long.  (You can gasp now.)

My mom was a smoker.  She had been smoking for decades.  She always had a carton of Merits in our laundry alcove.  Our house smelled like smoke but it was all we knew.  I didn’t even notice it.  I wonder if the nuns at school smelled it on our brown plaid uniforms? They must have.  But then again, it was the 70’s.

My older-by-11-months sister, Jennifer, and I played with neighborhood friends.  In those days you did, you could, and no one was overscheduled.  We were fancy free.  We swam, we walked to the candy store, AKA “the liquor deli,” on the corner in Rossmoor, and we made up skate routines to disco music.

It would be easy to blame the older neighbor girl for influencing Jennifer and I to steal my mom’s smokes and give it a try.  She was 11 after all, and so worldly.  It may have been a factor.  Maybe.

Or it could have just been childish, foolish curiosity.

I was  a ”good kid,” a people pleaser and a rule follower.  I kept my side of the bedroom neat and clean and organized.  I liked school and always got outstanding citizenship awards at St. Hedwig’s Catholic School.  I may have mouthed off once in a while to my mother’s dismay, but I was not an out of control 9 year-old.

However, in a whim or a dare or a thought, we stole my mom’s cigarettes for a whole summer and smoked in our playroom.  We played office or restaurant and had ashtrays nearby.  My mom was a single working mom and we had our little puff parties while our babysitter was downstairs watching tv or who knows what.   What was she doing?!  Because how did she NOT check on us and catch us?  We were three young girls, ages 9, 10, and 11.  Not needing constant supervision but A LITTLE MORE that we were getting obviously.  She could have protected us from our silly selves.

Again, I cannot really blame the sitter.  We made our choices.  And we liked looking like Farrah Fawcett with our feathery hair (or was it Dorothy Hamill bowl cuts?) and trying to blow smoke rings. So cool and sophisticated were we!  So grown up.  So we thought.

As a mother who worries about the choices my kids make, and WILL MAKE, I’m a little taken back with this childhood memory.  Not really proud of it.

Yet, the big take away from this trip down memory lane does leave some wisdom.  What I extract from this is that good kids make mistakes.  Really good kids make mistakes.  They do.  My kids will. Your kids will.  Even if I passed Parenting Perfectly 101.  They will have their own ideas, their own will, and their own immaturity to contend with.  Not to mention peer influences and unique opportunities that will be in front of them.

I never became a full-blown smoker.  It did not lead to pot addiction at age 10, 13 or 17, etc.  I did not turn into an uber rebellious teenager.  I absolutely made bad choices; I am not trying to sound pious or self-righteous in any way.  No.  But I did not go off the proverbial deep end because I tried cigarettes at age 9.

I share this story because it (strangely) comforts me as I begin a new chapter as Parent-To-A-Teenager-Boy.  He will make mistakes.  He will even be foolish or reckless. (Only once or twice, right?)  But I do not need to have a panic attack and imagine he is ruined forever if there is one or two or three bad choices made, even one BIG ONE.  It does not determine his whole identity and existence and future.

I still wonder if my mom knew what we were up to that summer….


Tales from the Toilet

I am literally sitting in my bathroom.  And yes, I do keep little notebooks EVERYWHERE for when “aha-writing-moments” appear.  Which is often, but I don’t always stop long enough to jot it all down.  But, I digress.

I am in here not due to tummy catastrophe but because a tantruming child is outside the door.  He or she (I won’t give it away) is pounding on the door and apparently did not read the Boundaries book.

I am giving myself a mommy time-out as they say.  Or I should really call it the “count-my-blessings-so-I-don’t-curse-at-you and-then-feel-eternally-guilty time-out.”  Now, I would NEVER actually curse at my children.  Never.  (Well, be careful to never say never…I’m not perfect and I make mistakes all the time.)  But I think about it and feel it in those moments.

You know.  THOSE MOMENTS.  All mothers have them.  All.

When your kids are unkindly fighting, or they are fighting with you, or having a tantrum of epic proportions, or having a major teen attitude, or when they are in egocentric, narcissistic me-me-me mode.  I know my kids are the only ones.  Yours are all perfectly behaved at all times.  And all you have to do is give THE LOOK and they back down from a potential bad choice in words or actions.

Well, if you live in my reality, you sometimes need to run to the toilet.  You stop, sit, collect yourself, and literally BY AN ACT OF YOUR WILL, tell God thank you for your life, your children, your home, and for being a mom, until…poof, the anger is gone.  Or mostly gone.  Then you can re-enter mom-life in the kitchen or wherever you are and not be unkind, or irrational or impatient.

It takes a decision, a will, and great intention to not act their age and lose my cool and say emotionally reactive words.  This is easier for some of you than me.  If you have less stress or pressure, or protect your schedules from total craziness,  it helps.  When you live with ongoing chronic stress from ____(you fill it in), that won’t go away (a disabled child, as in my story), its easy to find yourself in the “I’m going to lose my cool again” category of moms.

I will combat my stress and heated difficult parenting moments with trips to the toilet.

I read a really darling short story about a woman who locked herself in her master bathroom happily for the weekend.  It was her own special stay-cation, complete with Orangina and crackers.

I may have to try that.  Don’t tell my kids.


The All-Together-ness of Summer

I survived the first week of summer break with a smile. Barely.  Only 10 more weeks, but no one else in the Patay household is counting.  But me, I admit.  Deep breaths.

Don’t get me wrong.  I welcome the respite from homework, projects, meetings, volunteering, packing lunches, and staying on top of endless papers that come home.  My in-basket is sooo happy to be less full.

I have loved a week free of nagging, pleading or threatening to get out the door on time.  Three kids in three schools.  Sounds worse than it is, but sheesh.  I am happy not to think about that right now.  The end of the school year trauma for moms (or dads) was captured hysterically and so-right-on by Jen Hatmaker’s article, “Worst End of School Year Mom Ever.”  A must must must read.  You will love her honesty and humor.  You will feel incredibly validated.

We did have a highlight moment I must say.  The first Sunday after summer break invaded my life and personal space…oh, I mean joyfully began…we, as a whole family created our “Summer Bucket List.”  This is year two of this tradition.  I am not your fun-summer-mama-full-of-arts-and-crafts-and-amazing-outings, but this bucket list makes my kids think I am.  Heck, it makes me believe I am.  It helps me to be intentional and look forward to many special events and memories to be made.  And my kids loooove the Bucket List.  They will lock this in as a childhood AHHH.  (And hopefully forgive and forget some of the ways I have blown it.)  Our Bucket List is on a huge colorful poster board in our dining room. I see it every day and it helps remind me that I won’t completely suffocate over summer.

Yes, I used the word suffocate. Because, we are All. Together. All. The . Time.  And the three little darlings are around EACH OTHER all the time.  They bug each other and stare at each other and touch each other and copy each other and it escalates and then they are at war with each other.

Every day its “What fun activity are we doing today?” And after we get home from said fun activity, “Now what, Mom?”  “Mom. Mom. Mom. Mom. Mom. Moooooommeeee.”

It seems the SoCal June Gloom hit RIGHT as the clock turned 12:46 pm on the last day of school.  This does not help me at all.  We had positively gorgeous sunshine day after day.  Until we didn’t.  And still do not, (mostly).  Which means we have not been swimming, beach-ing, or park-hopping.  Lots of being at home.  All of us.

There are many ways for moms to cope with this.  I found myself hiding in my closet the other day, “cleaning it out,” with the iPad in tow, watching an episode of Breaking Bad.  Yes, I was hiding away. Proud Mommy Moment #2089.

Another coping mechanism is to drown out the noise (I must be getting old) and other unpleasantries, with music.  PANDORA is on 24/7 in my house and I’ve also been carrying around my iPhone with various tunes shuffling through.  Music is my happy place (one of many) and it lifts me up and fills my soul.  No, I’m not

checking out here, friends.  Don’t judge me.  Prayer, exercise and mommy-breaks are also utilized as coping skills.  Jen Hatmaker, my new pretend BFF, also has a piece called “Survivng Summer,” which is chock full of ideas.  Wish I lived next door to her.

As I was writing this, and sharing my theme with my husband, he started with, “Not another…” I stopped him right there where he would possibly say “another venting piece.” I’m guessing, because I did not let him go on, and further justified my venting because of how HARD it is for me. Maybe not for him.  He is more tolerant and patient.  And he is not here all day either.

The all-together-ness that leads to fighting, to loudness, to constant questions, to the never-ending, “Now what, Mom?” makes me want to pull my hair out.  Or theirs, but I DO refrain.  Kate asked me why I had to go to the gym again this morning, and I said, “Because you know those times I get grumpy and lose my cool?  That would happen A LOT more if I did not exercise.” She does not get it, but when she is a mommy she will.

I am one who needs a little alone time, a little space, a little time to myself.  To think, to write, to exercise, to work.

I need space just to keep up on the household to-do lists.  I NEED them to be in school, and I could never homeschool, because of the all-together-ness factor.  I have projects that awaited me till now like two boxes of filing that are so over-full.  My house is photo-shopped all neat and tidy, but don’t dare look inside my closets and drawers.  I’m in desperate need of deep organization.

I am really not a Negative Nellie or a Sourpuss Sylvia.  Ok maybe today. And then the pity party will be over.

I do LOVE summer, the theme, the feel, the weather, the tanks and flips, the sun and trips, the grilling, and the endless memories made.  Even in this week of I have had belly-laughing moments, doubled over in the kitchen, when I thought my bladder would give out.  Yes. That kind of fun and humor and goodness.  Its possible in the Patay House, despite my ranting and raving.

Long mornings of pajamas and tv time, or hanging out and playing with no where we HAVE TO BE is bliss.  Truly.  Lets all have a collective sigh. Once the June Gloom subsides and real sunshine takes over, our souls will open up a bit.  Our Summer Bucket List of FUN awaits us.  And maybe you could join us, too.


A Curved Spine & A Curved Heart


Ryan has scoliosis, and I have another kind of OSIS.

Ryan has had it since he was a baby.  It’s a “C” curve to his left side.  His OT and I noticed it as Ryan would lean to one side in his infant seat.  Today, its not obvious to others unless in a bathing suit and swim shirt.  You can see him lean and favor one side.  And with his shirt off, well, it just makes me sad.

He was first braced at a little over age 1.  He would wear the little toddler-sized brace at naptimes and bedtime.  Every time we squeezed his skinny low-toned body into it, he would gasp a touch, and breathe harder.  Until at last he would adjust and relax into the brace.  Not that it was a relaxing thing, but he would just surrender to the process, the sweetie pie.  Ryan wore that brace until he was finally up and walking at three years of age.  How we waited for both of those major milestones!

The protocol after that was to watch and wait and get yearly x-rays.  We would have check-ins and check-ups with our “orthopod” in Beverly Hills.  Notice I say weWhen you are a mother, sometimes the lines just get blurred, don’t they?

Ryan is “9-almost-10,” as he says it, and he has a new brace.  The curve is at a 28-30 degree again, and surgery is recommended at a 50 degree curve.  His new brace is huge and clunky and cumbersome compared to the toddler brace of days gone by.  It has spaceships all over it as if somehow that is comforting to him, even though he cannot see it when he wears it.  (ok, my sad-bad attitude about this is poking out…)

However, Ryan, yet again, exceeds our expectations and WILLINGLY wears his blue brace.  And sometimes the sweet boy actually seems proud of it.  Luke calls him “Ironman” when he wears it, and Kate reminds him, “It’ll make your back so strong.”  And sometimes I smile-the-proud-mama-smile, and sometimes I hold back tears.  Will we surprise the doctor again with dramatic improvement after 1-2 years of bracing?  OR is surgery completely inevitable?  I tell myself, “Wait and see…wait and see. Hope.  Have some hope, Jessica.”  (I know you talk to yourselves, too.)

I have a different kind of OSIS—-perfection-osis.  Yes, I just made up a word.  My heart is curved.  Figuratively speaking of course.  The more years go on (just had my 43rd birthday), the more I am aware of my perfectionism.

I do not say this like it’s a wonderful badge of honor.  Its more like an admission and confession, an owning up of a condition that has plagued me since I was a kid.  Which is why I have had headaches, and now migraines, since I was 12.  I’m sure of it.  I even had a neurologist tell my mom when I was in college that headaches come with my type of personality and expectations.  I may have food allergies, but truly I think I have heart and soul allergies.

There is a brace for this sort of problem:  God’s love.  For me.  Wrapped around me.  If I would be so willing, as Ryan, to accept the brace daily.

Lately, through books, devotionals, and messages from my pastor, loud and clear, this is what’s coming through:

That if I could “live increasingly from my real Center, where God’s love has an eternal grip on me, “ I could let  go of my perfectionism.

If  I truly understood the depth of how the amazing God of the Universe sees me, loves me, accepts me, cherishes me, supports me, heals me, and embraces me unconditionally:

–I would care less about others’ opinions or approval of me.

–I would be less obsessive about working out and staying fit.  (Yes, I do this to be healthy, it’s a passion of mine, but honestly there is vanity mixed in as well.)

–I would spend less on the frivolous stuff.

–I would probably be a more patient mom and more fun, too.

–I would not be driven by such self-imposed high expectations.

–I would therefore have less stress and less headaches.

–I would be more “others-focused” and giving of myself.

–I would probably never or less often hear the words, “Oh, Jess, you are so hard on yourself.”

Which you might be saying as you read this blog post.

Yet, I say all this openly and share this because I so want to live my life with intention, and grow, and not be stuck with my curved heart.  Perfection-osis leads to heart and soul death.

Ryan must wear his brace.

And so must I.



Divine Appointments & Chili

Touchdown_Chili_Recipe.ashxToday’s post may not be full of a thousand words.  But its packed chock full.

Of heart.

Of soul.

Of spirit.

Of joy.

Of awe.

Of humble appreciation.

Of gratitude.

Of humanity.

What comes out of a simple invitation for hot chili on a cold winter day astounds me.

A new family, new to us, and us, new to them, came over for lunch.  The house was picked up. Bathroom cleaned. Table set. Flowers in a vase. Nice-smelly candle lit. Fireplace on.  Cozy was the call.

Doorbell rang. We did the usual introductions. Hung in the foyer a few minutes. And then invited them in. Fully in.  Some of the kids were shy, some eager to play together, one full of questions (always, wink wink…).

We sat down and the floodgates opened.  We shared. We exchanged. We laughed. We over-shared and apologized, but it didn’t matter, not one bit.  It was rich.

And the whole time I am thinking and feeling grateful to be a part of a Larger God-Story going on here.

I love those moments, conversations, and meetings of new people, when you know God is behind the whole thing.  That there is a reason I am now in your life.  That there is a reason you are now in my life.  Its naught for naught.  Its deep. Its spiritual.  I call these Divine Appointments.

And always, a Divine Appointment is orchestrated by God, who loves and cares deeply about people.  He brings people together because someone needs wisdom.  Or inspiration. Or healing. Or love. Or a word of encouragement. Or an act of kindness. Or a new friend.  Or a special connection for personal or even business reasons.  Or deep spiritual truth and conviction that always points one or another back to the Lord.

Yesterday’s hot chili-and-chips-or-cornbread-lunch may have filled up my tummy.  Which lasts a few hours.

Yet our exchange with this new family filled up my heart and spirit forever.  I am so very humble to be a part of what God is doing in someone else’s life. I am grateful that God would use me, (really, Chris and me), a person so flawed, so messy, so full of my own sinfulness and mistakes, to be of inspiration to another.

I always say that crisis brings clarity to one’s life. And it does.  But on the happier flip-side, Divine Appointments with another human being also bring clarity and perspective on what really matters in this short life on Earth.


Moses Makes Great Dinners In Heaven

Some years it hits me.  Some years it does not. That post-Christmas blah. The let-down.

On December 26th.  Or even sometimes RIGHT after the Christmas morning of fun and frenzy and children’s delights are all over.

Even though I don’t believe in Santa Clause or any Christmas magic per se, I have realized my adult self still has this longing and expectation at Christmastime.  That somehow a special fulfillment will arrive on December 25th.  And then the day comes and goes and poof, it doesn’t happen.

Unmet expectations.

Longings unfulfilled.

Wishes not granted.

Hopes disappointed.

Dreams dashed into despair.

This is the reality for many, at any time of the year.

This reminds me of a time my husband, Chris, had an opportunity to share at church. The theme was surrounding suffering and desires unfulfilled. He did an eloquent job, (if I do say so myself), and its so worth passing on right now.

Here is an excerpt:

Doesn’t it seem the bigger the shattered expectation or the greater the desire that isn’t satisfied, the greater our unhappiness, pain, and suffering?  It was painful to learn that our son, Ryan, has Prader-Willi Syndrome (PWS), and it shattered our desires for a son who would naturally develop friendships, graduate from college, get married, have children, and grow up to live an independent life.

The most unique characteristic of persons with PWS is that they have an insatiable appetite–actually they never feel full.  Hunger is never satisfied.  Eventually persons with PWS become very food-seeking and develop an extreme food obsession.  Although Ryan does not sneak or steal food, one of his biggest anxieties arises around his eating schedule.  He needs constant reassurance every day that he will get his breakfast-snack-lunch-snack-dinner without fail.  Cutting off a meal or snack-time for Ryan is like cutting off his oxygen.

C.S. Lewis has an intriguing quote in Mere Christianity:

   “If I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another wold.”

In light of all our struggles with Ryan, and other rough seasons for our family, that quote is challenging to me for a few reasons.  

Why is it that we live in a world where some of our deepest desires are not satisfied?   For Ryan, it’s his hunger.  It’s something for all of us.   If God created this world, doesn’t He bear some responsibility for our struggles and unsatisfied lives?   If  God doesn’t directly cause our suffering, can’t He nonetheless heal and fix things here and now — in this world?   How can I trust that heaven will truly satisfy all longings of my heart?   I haven’t discovered the best answers to those hard questions, but in the midst of daily heartache of life with a child with special needs, Ryan has helped me learn more about who God is.  I had one of those moments recently.

I was praying one early Saturday morning (not often I confess) and Ryan walked in the room after just waking up.  He asked what I was doing and I told him that I was praying.  He came and sat on my lap.  I asked him if he wanted to pray, too.   I told him to sit quietly and see if God had anything to say.  Ryan said ok, and put his head down on my shoulder and we sat still. Together.

After a few minutes, I asked, “Did God say anything to you?”

Ryan said, “Yes.”

Surprised, I asked Ryan what He said.

Ryan responded, “God told me I’m a great boy and He likes me.”

Hmm…perhaps God is speaking to him?  “That’s great,” I said.  “Did God tell you anything else?”

Ryan paused for a moment and turned to me and answered, “Moses makes great dinners in Heaven.”

I was truly moved and simply replied “Yes, Ryan, Moses makes great dinners in Heaven.”

God didn’t just speak to Ryan at that moment; He also spoke to me.  If Ryan had asked me what God or heaven is like, that’s certainly not how I’d answer.  However, that IS the way a personal God who cares about Ryan would describe Himself and heaven. God assured Ryan that his hunger — which nothing in this world can ever satisfy — will be satisfied in Heaven.  There’s nothing more I’d want for Ryan than for him to truly believe that God loves him, and despite such exceptional challenges, to understand that God can satisfy the deepest longings of his heart.   

I may never know why we, or Ryan, have to endure such trials and challenges, but it’s a great joy to know that Heaven is a place Ryan can look forward to and long for. Where his deepest desires and longings will be fulfilled. Forever.

Although this year was NOT one of those blah years for me, I am thankful for this reminder that Heaven is real and no blah moments or blah seasons of life exist there.


Still No Tears Over Sandyhook

I am surprised at my reaction to the Sandyhook tragedy.  Or my lack of reaction, in terms of tears and sadness and heaviness.

For anyone who knows me, I am a touchy-feely girl who cries at sappy commercials and gets choked up EASILY at others’ joys or woes.  I FEEL.  I LIKE TO FEEL.  I go to movies that are contrived and emotional because I like to FEEL things.

Last Friday I was in a meeting until almost 1:00 pm (Pacific Time), so I did not hear about the Sandyhook incident till after that.  I did not turn on the news.  I did not check the internet.

I saw people’s posts all over Facebook. But I could not read any articles.  I could not look at pictures.  I could-not-would-not look at anything too closely.

My defense mechanism was and is to put it at arm’s length.  I could not dare personalize the drama and imagine this horror happening at my little Kate’s elementary school or Ryan’s elementary school.  I could not think about darling little children being gunned down by an evil maniac.  It was and is JUST TOO MUCH  for me.  So I push it away.  I don’t even want to talk about it.

And although I recognize this is my defense mechanism, I feel embarrassed and kind of ashamed.  Especially when I have briefly read other people’s dramatic posts.

I still have no tears.

The jaded part of me says, “Bad things happen all the time.  There are horrors going on daily in millions of people’s lives.  We live in an extremely broken world.  This is yet another unbelievable story.  And there will be more.  I cannot let myself get dragged down, or dwell on it.”

Please don’t judge me.  I am not as insensitive as this sounds.  Maybe this cynicism is born out of experiencing crisis after crisis in my own family life.  Maybe it’s because I know this world is not as it should be, not as God designed it to be.  And Heaven will be.  (I don’t mean that morbidly, friends.)

The only article i did read was “I Am Adam Lanza’s Mother” by Liza Long, a freelance writer, whose piece made it into the Huffington Post.

As a mother of a son with special needs, I did personalize THAT.  Although Ryan does not have the same challenges as this young man did, I do think about the greater mental health issues of our country and the lack of adequate funding and help for all affected.  It may become epidemic someday especially if there are not proper, long-term, costly-but-made-affordable-to-most, interventions.  For all ages.  Many children and adults will Fall. Right. Through. The. Cracks.  I do not want that to be Ryan, especially if his psychiatric health takes an ugly turn.

I thought that maybe writing about this today would elicit some suppressed emotions. But it has not.  Maybe it will all be delayed.  Maybe not.

What are your thoughts and reactions??


Just Unwrap

toyshop-pile-of-presentsA dear friend of mine says to her “special” daughter every morning as she looks into her chocolate eyes, “You are a gift.”  It’s her daily mantra.  Before the cares of the world set in, before the grind begins, before any reminders of the challenging journey she is on, before.  She has chosen to remind herself, despite the hardships of having a disabled child, that her daughter is a gift. Everyday. To her.  To her family.  To the world.

My friend’s beautiful way of facing every day of her daughter’s disability has had a profound impact on me. That I need to adopt an “attitude of gratitude” about Ryan before my day begins.  Armed with my morning coffee, I should clear my head of concerns and worries and to-do lists (so many of them!).  As my earliest riser Ryan comes down the hallway, I need to hug him, look into his watery blue eyes and say, “You are a gift to me.  You are a gift to our family.”

It sounds so sweet and syrupy and cliché sometimes.  It’s very hip and chic these days to throw around phrases of thanks and take on a no-complaining-no-whining rule.  We “say” we are grateful.  We keep gratitude journals. We say having a disabled child is a “blessing in disguise.”  We say it in our head.  It’s true in theory.  Yet when our hearts ache with the reality, and the on and off grieving we parents undergo, we quickly forget.  We can so easily get swallowed up in just how darn hard our journeys are.  And they are.

Therefore, in an effort to be proactively adopting a theme of gratitude in my head AND heart, I have compiled a list of things about Ryan that I am thankful for.  Here are some examples:

  1. Ryan is very polite and appreciative.
  2. Ryan never complains about any meal or snack I make for him.
  3. Ryan never complains about chore time.
  4. When I say its time for a bath, he says, “Can I play in there?” versus “But I am not dirty, and do I have to?”
  5. Ryan is very enthusiastic about family outings.
  6. Ryan has language and uses it.  (Yes, despite the 873 questions per day or per hour, I am thankful.)
  7. Ryan loves to go to school.
  8. Ryan never pops out of bed once tucked in. He’s asleep in 60 seconds.
  9. Ryan is fearless. (which leads to #10)
  10. Ryan loves roller-coasters, all sizes and speeds!
  11. Ryan is a go-getter at times and surprises us with great tenacity in physical tasks.
  12. Ryan is extremely thankful, for everything, even stickers from the Trader Joes clerk.
  13. Ryan hugs me and says, “I love you Mama” completely unprompted.  He says it often.

Have you ever NOT OPENED a package or present? Just left it in the closet?  By not listing, thinking about, and meditating on qualities and traits in Ryan I am thankful for, I am basically choosing to not unwrap a gift.  That would be foolish at best and detrimental at worst.  I owe it to Ryan.  I owe it to myself.  I am one of those people who, when receiving a birthday present in the mail, opens it immediately.  My husband will tease, “Can’t you wait till your actual birthday?” And I quickly and sheepishly say “No!”  I’m like a kid again on Christmas morning voraciously ripping through gifts with parents pleading me to slow down.  So how can I NOT unwrap Ryan?  He’s my sweet beautiful ocean-eyes blondie who is social, affectionate, and very complimentary.  Who, despite his many limitations and anxieties, has a true zest for life, and family, and holidays, and of course, food.  Ryan Bradley Patay is a gift, a gift I get to unwrap every single day.