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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That Post Christmas Blah

Some years it hits me.  Some years it does not.

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, 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 losses in our family, that quote is challenging to me for a few reasons.  

The first part of that quote is hard, because I often wonder why do we live in a world where some of my deepest desires are not satisfied?  Does God bear any responsibility? If not directly, can’t He heal and fix things here and now?  After all, aren’t all things possible through Him?   I haven’t discovered all the answers to those questions, but in the midst of daily heartache of life with a child with special needs, God does show up sometimes and I had one of those moments recently.

I was spending some time is prayer one early Saturday morning. Ryan walked in the room after just waking up.  He asked what I was doing and I told him that I was praying and listening to God.  He came and sat on my lap.  I asked him if he wanted to listen to God, too.   I told him that if you sit quietly, God will speak to you in your mind.  He 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.”

I asked him what he said.

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

I said, “That’s great. Did God tell you anything else?”

He paused for a moment and answered, “Moses makes great dinners in Heaven.”

I responded, “Yes, Ryan, Moses makes great dinners in Heaven.”

God didn’t just speak to Ryan at that moment; he also spoke to me.  God cares enough about Ryan in a personal way to reassure him that his hunger 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 his 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 its a great joy to know that Heaven is a place Ryan can look forward to and long for. Where our deepest desires and longings will be fulfilled. Forever.

ME, TOO.

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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.

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Jen Hatmaker Is My New Imaginary Friend

I have a crush on Jen Hatmaker.

She is a new discovery to me.  Writer, blogger, speaker, mother to 5 (she wins!), including two she adopted from Africa, and wife to Brandon Hatmaker.  She lives in a city I would love to live in, Austin, Texas.

Anyway, after reading her blog post that went completely and insanely viral, “The Worst End of School Year Mom Ever,” I was hooked.

Because she’s my kind of girl.  With her unbridled and unfiltered way of writing, she engages you quickly.  She is hysterical on top of that.  She says how she thinks and feels.  REALLY thinks and feels, not what she wants you to think of her.  She’s not trying to win our approval or favor.  Yet, she is not abrasive.  Some people find sarcasm abrasive; I do not.

She’s not writing to make herself sound like The Perfect Mom, The Organized Mom, or The I Have It All Together All The Time Mom.

She’s honest.  And imperfect.  Honest about her imperfections.  So you relate to her, like her, love her, want to high-five her and buy her a drink.  (I actually tweeted that to her, but I’m so tech-challenged, it probably did not reach her.)

If you’ve followed my blog or me around long enough, you know I don’t mince words.  I’m painfully honest about life as both a mother and special needs mother, and totally full of a zillion imperfections.  I am not afraid to admit Major Mommy Failures.

Jen Hatmaker, if I had my wish, would be my next door neighbor.  And running partner.  (I don’t know if she runs.)  And prayer partner.  Oh, and of course, my writing coach.  I imagine us throwing back a glass of wine and sharing war stories and encouraging each other forward.  My stomach muscles would ache from all the laughter.  Did I already say she is hilarious?    She’s the type who would never judge me for pulling one of my kid’s hair (once!)   She would remind me to have new mercies each day for my kids and remind me how deep breaths and Twizzlers help when you are pushed to the brink in Mommy Land.  She would pray for me, in a caring humble way, not in a “Lawd, HELP HER!!” way.

My other pretend next-door neighbor would be Glennon Doyle Melton.  Because I know that if she heard me raise my voice at my kids, she would probably knock on my door, and give me a wink and a hug.  And again, not judge me, but say, “Carry on warrior mama.  You can do hard.”

Glennon, creator of Momastery.com, writer, speaker, blogger, is another new fave.  She is so gutfully honest about her own struggles, and is passionate about “making the unknown known.”  Her heart and vision is to help others unmask and take off their superhero capes they hide behind.  To help others be vulnerable and truthful about who they are.  She is so snarky and smoke-and-joke in her writing that I feel she gets me and the snarky way I sometimes feel.  Yet she is so sensitive and deeply profound, and writes provocative posts.  She was born an old soul.

One more shout out I must must give is to Rebekah Lyons, author of Freefall to Fly—A Breathtaking Journey Toward  A Life Of Meaning.  (I have actually met Rebekah in person and she is lovely, I might add.) She writes like Jen and Glennon, from her heart.  She writes her own story, authentically and transparently.  She blows open the topic of depression and anxiety women face.  She bares it all and in the meantime blesses us to our souls and we are changed for the better.

What all three women offer to us in their writing is validation, encouragement, wisdom and feeling completely understood.  They offer themselves.  And if we lived next door to them, I’m sure it would come out of their pores and smiles.

What is speaking to me these days in my life as a mother, is—IT IS HARD TO BE A MOTHER.  A GOOD ONE, that is.  It’s definitely easier to be unintentional, lazy, emotionally-reactive, and neglectful.  I don’t want to be that.  God, no.

It’s HARD to do it all, wear 17 hats, and keep the Pottery Barn plates spinning and do it gracefully without ever becoming frustrated, tired, or just unglued.  NOBODY CAN, I remind myself, but not enough.  As my friend Kristin says, “NO ONE lives the Pottery barn life, and its time we all started talking about it!”

If “they” say they do, and, with a smile on their face, then they are inauthentic. And I cannot be friends with them.

–I love being a mother and then I don’t.

–I try and I fail.

–I do good and I do bad.

–I hug and I holler.

–I cuddle and I cuss (not in front of them).

–I love-on my littles, and then I’m a total lame-ass.

–I’m emotionally present, and then I’m aloof.

–I’m all fun-goofy-and-dance-party mom, then I’m somber and

preoccupied.

–Like Katy Perry sings, I’m hot and I’m cold.

–I embrace the chaos and clutter and a minute later I curse it.

–I question whether I should have become a mother—and then I have THE BEST MOMMY MOMENT EVER, and I recoil at the thought.

–I make special dates with my kids, and then I dream about special dates for me, all alone, in a beautiful hotel by the beach.  Alone.

I’m human.

I’m embracing my humanity, my feelings, my thoughts, my strengths, my weaknesses, my sins, and my angst.  I am trying to let go of the guilt I feel all of the time about the mistakes I make 23 times a day.  This is a real challenge…the mommy guilt.

I lay it all out for you to read and peer into.

And I do sometimes wonder what my mom or mother-in-law would say if they were alive and reading my blog.  Would they applaud me or be horrified at what I spill out?

It’s cathartic for me, and by the lovely and kind responses I’ve received, it’s cathartic for you.

The angst I feel in motherhood fuels my writing.  Maybe that is why God has not healed me or released me from it, nor has He slapped me up side the head with a new perspective. (Not that He, in His goodness and mercy, would actually do that.)

So, I embrace you, Mothers of All Littles out there.  I embrace your gifts and talents and courage as a mom.  Whether you are a SAHM, or a working mom, both lifestyles are taxing and wonderful.  I embrace your failures, your fears, and your anger, that you never even knew you had, till you had children.

I do not and will not judge you.  I wont judge you if you “have it all together” or if you pretend to, or if you can never, ever, ever seem to get out the door on time.  I won’t judge you if you pull up to school in a sippy-cup-laden, messy minivan, or a pristine Prius.  We all try so very HARD to get it right.  As my friend, Kristin says, “NO ONE has a Pottery Barn life, and its time we all started talking about it!”

I just lied. 

I would be a little bummed about your pretending (or just jealous of your incredible organizational skills!).  Actually really bummed.  I understand the appropriate game face at certain times and situations.  I took Social Skills 101 and 102.  But a lifestyle of pretending, denying, and hiding does not equal joy or growth. Does not.

My new mantra is:

 HONESTY+VULNERABILITY+TRANSPARENCY= TRANSFORMATION

I want to grow.  Desperately.  And I want you to grow, too.  Into the most beautiful, loving, giving, compassionate person you can be.  As mothers, as wives, as daughters, sisters, and girlfriends.  All these parts of us are gifted and to be shared.  For the good and blessing of the world.

Even though Jen Hatmaker and Glennon Doyle Melton are just my pretend BFFs, I am thankful I DO have women in my life (you know who you are dear girlfreinds) who accept me, who inspire me, and who push me (and sometimes) drag me towards a transformed life.

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When Tears Are More Than Tears

Just as laughter can be rich-belly-laughter, so can tears come in a way that you know they are from deep within one’s soul.

Kate had those kind of tears a few mornings ago.  And I had to pull the minivan off the road just to hug her and hold her.

We were on our way to drop Luke off at middle school.  Which is always a feat to get the three of them out the door that early.

Not more than a minute in, Ryan started to annoy Kate.  (But of course, what else are car rides with kids for?) And she told him to stop.  He liked the rise he was getting out of her, especially as her pitch rose and her passion ensued.  He was smiling (I could feel it) and relishing in his pestering of her.

And then she broke.  She started crying and yelling at him to stop. And it was primal and guttural.

Not the whiny-crying.

Not the manipulating-crying.

Not the baby-in-the-family-type-of-crying.

It was grief.

It was hurt.

It was disappointment.

It was anger.

It was sadness.

It came from a deep place, and she could no longer squash it and just be the sweet, motherly sister who cares dearly and is so uber protective of her older-and-younger-brother, Ryan.

All about Ryan, and having “special needs” that she wished he didn’t have.  And wished nobody knew about.

I pulled over to the side of Grayslake Road.  I did not care one bit if we were running late.  Kate needed me.  She NEEDED a hug.  She needed everything to just stop, for one bless-ed moment, so she could be comforted.  By me.

I slid open the van door and just swooped around her little body.  I held her tight.  And I held in MY TEARS so tightly.

She then whispered as our heads were so close to each other, “I love you, Mom, I love you.”  As if to say, “thank you for validating my tears, and EVERY SINGLE THING I am feeling right now.”

It was a morning that started out like every rushed, hectic before-school chaotic morning.  Unremarkable.  The usual.

But that moment with Kate, I will never forget.

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A Curved Spine & A Curved Heart

early-onset-scoliosis1-238x300 

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.

 

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Confession

Its TRUTH-TIME.  

I will share 10 ways I have blown it as a PWS mom. (I blow it as a “regular mom” all the time, too, by the way.)

We, as parents and caregivers of a child or adult child with Prader-Willi syndrome, are all trying our best to provide what our special peeps need.  We read, we research, we go to endless appointments, we read newsletters like this, we attend behavior training sessions, we follow food schedules and life schedules and implement car rules and safe eating rules, AND WE REALLY TRY to maintain a calm environment.  We desire for our child (all our children) to succeed as best they can.  And we are working so very hard.  Hard. All the time.

Then we blow it. Or at least I do.  Here are the 10:

  • I lost my cool. I yelled at Ryan.
  • I rewarded with food (the whole family).
  • I gave in to a tantrum.
  • I triggered a tantrum with my impatience with the 583rd question of the day. (Or was that 983rd?)
  • I did not monitor calories.
  • I did not do proper priming before an activity or event or change in schedule, and therefore paid the price with a tantrum.
  • I used negative consequences (took away his beloved CD player) even though they don’t work.  (And I know they don’t work.)
  • I gave up on the token system because I was sick of having to be uber –consistent with it, month after month.
  • Used a threat to motivate him to do what I needed him to do.
  • Are we at #10 yet? You get the idea…

When I make these mistakes from time to time, hopefully not all in one day,  I beat myself up horribly and feel that darn mommy guilt.  Again.  The guilt monkey sitting on my shoulder loves to taunt and berate me to no end.  And I accept it for a little while. Then I tell myself, we all do it.  We all make mistakes.  Yes, even the ones who seem to have it all together and tell you they “never ever yell” at their kids.

We must give ourselves a little grace once in a while.  We are imperfect people living in an imperfect world with an imperfect family dynamic going on.  Why do we (or just me) need to place unrealistic expectations on ourselves to NEVER EVER make a mistake as we parent?  Do we need to beat on ourselves over and over? I think not my friends.

GRACE.  Give yourselves some today.  Forgive yourself for the mistakes you made and move on.  Know that you are, that we are, absolutely making a difference in our children’s lives despite mishaps and blunders.  OH YES, WE ARE.

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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.

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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.

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