She Runs A Good Race

mothering is a marathon

A Raw and Honest Love Letter

126018790Dear Sweet Mama,

You have been given an incredible, amazing, and heartbreaking gift.

You have been given a child with “special needs.”

The needs could range from severe allergies to severe handicaps and/or anything in between.  Not that there is a spectrum and your story is worse than another’s mom’s story.  Or her story is worse than your story.  You just each have a story.  And a journey that has been difficult.  It may get easier.  It may get harder.  BUT you are all “special mamas” together.  You are all in this TOGETHER.

And it’s not the road you asked to travel down.  You were hoping for the raod that leads to Italy, Fiji, or Santorini.  Yet instead your travel stop landed you in the middle of a war-torn country you’ve never been in.  There are landmines to baby step around.  There are well-meaning but insensitive people there.  And there are downright nasty, unjust humans there, too, who make your struggle to provide everything your child needs, all that more challenging.

It is TRUE, though, that in this distant land of life with disability there are angels.  There are lovely souls who care, and whose patience and compassion are as vast as the universe sky.  There are angels each step of the journey if you look for them, in the smallest cracks of your day. YES.

Sweet Special Mama, do not think for one second that your experiences in Motherhood are in any way on par with families who have not encountered disability.

Do not think for one second you should be like THAT MOM, wife or family.

Do not expect that you will cherish motherhood and parenting in the same way.

Do not expect that you will not need breaks.  Lots of them.

Do not expect to never fantasize what life would be like if your child was born perfectly healthy in every single possible way.

Do not condemn yourself for wishing, hoping, praying, and pleading for a re-do.

Do not condemn yourself for wondering if life would be easier for you, your husband, and your other children, if your child passed away.

You, Mama, carry heartache.

You carry loss.

You carry an on-again off-again grief.  And it comes in waves.  And in your everyday life, its there underneath the surface, threatening to come up.

It takes some of your joy.  It makes you tense.  It makes you more snappy and less carefree-and-happy.

You have become more tender and you have become tougher as a result of this terrific trial in caring for your disabled child.

And it’s ok.


You are ok.


You are very ok.


You can do hard.  You already have.

I know there are moments you absolutely want to curse and cry, “Why me?  Why us?”  You want to pull your hair out after a day of dealing with illness, or medical specialists, or anxiety or behavioral issues.  That is normal.  You are normal.

You need to vent.

You need to cry.

You need to share, with raw intensity and honesty, with other moms. Just be WITH.

You absolutely must exhale or your soul and spirit and body will implode.

That cannot happen because your precious child needs you, mama-bear-advocate-extraordinaire.  So find, seek, and chase after moments or days of respite.

In your brighter moments, you completely recognize that you are deeper, richer, more compassionate and more sensitive to the needs and crises of others because of what you have been through.  Because of what you go through every day.

Yet, it is VALID to wish that this unique opportunity for major emotional, spiritual, and intellectual growth was not given to you.  That personal growth could have come, should have come, in a different vehicle altogether.  No mother, however excellent and mature she is at having wise perspective, wishes for their child to be disabled.  No mother.

So again, do not place unrealistic expectations on yourself, your heart, your mind, and your day-to-day dealings with disability.  It is hard.  It is maddening.

And when the sweet moments and small victories come, inhale them, deep into your soul.  Because of these, you will survive.

Sweet Special-Needs Mama, you will survive, and the sun will still shine.

I love you,





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, 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


–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:


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.


For Their Father

IMG_9072I hear some women snippily say, “My husband is not MY father, why do I need to celebrate him?”  And despite that I can be selfish and snarky (once a year), I wholeheartedly DISAGREE with women who say this.  

Chris is the father of my children, our children.  Therefore I will celebrate him today for being the amazing father that he is to Luke, Ryan, and Kate. And if this post today is just too sappy and sweet for you, you can wait for my next one.  I’m sure the humor and edge will creep back in.   Besides this one is for CHRIS, who truly blesses our family with his love, dedication, and uber-patience.

Here are some of the many reasons I am extremely thankful that my kids have their dad:

  • He loves being a dad.
  • He prays for our family.
  • He works hard and exemplifies a strong work ethic.
  • He has a rich faith and shares it with our kids.
  • He makes regular one-on-one special dates with them.
  • He sets up backyard camping.
  • He sets up treasure hunts.
  • He reads parenting books.
  • He is cool, but not TOO cool that he can’t go to amusement parks with our kids (even without me).
  • He ensures we make it to Family Camp at Forest Home each year.
  • He is affectionate and playful.
  • He is hands-on and involved despite his stress and his demanding profession.
  • He loves me and tells me in front of the kids.
  • He found Ryan’s diagnosis of Prader-Willi syndrome online and pressed for testing.
  • He has attended all of Ryan’s IEP’s, critical meetings & doctor appointments.
  • He doles out praise and compliments.
  • He is not lazy.
  • He is not a chauvenist.
  • Even at bedtime-ish hours he is game for lighting up the fire-pit and making smores (I, on the other hand, not so much…).
  • He is the FUN ONE and makes memories happen.
  • He is the reason my kids see the snow and know how to ski.
  • He takes daddy-breaks (probably not enough).
  • He is not perfect, even though this post makes him sound so perfect, and he admits mistakes to the kids and me.

Happy Father’s Day, Chris!!  I am blessed beyond measure to have YOU be the dad to our children.  I love you and am eternally grateful for your support and partnership in this joyful and maddening journey of parenthood.


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.


So…About Blogging on Mother’s Day

frugal-gift-ideas-mothers-day-1-intro-lgSo I write this blog about life as a mom. And as a special needs mom, too. Duh….

And its 10:56 PM on Mother’s Day and I have yet to write something as beautiful as Ann Voskamp or witty as Anne Lamott, or just about Ann Young, my dear sweet mother, who passed away in 2004.


Instead, I will insert some quotes I love from my new coffee table book, Mom Candy.

Here goes:

“Making a decision to have a child–its momentous.  It is to decide forever to have your heart go walking around outside your body.”  –Elizabeth Stone, writer

“Mighty is the force of motherhood.  It transforms all things by its vital heat.”  –George Eliot, novelist

“There really are places in the heart you dont even know exist until you love a child.”  –Anne Lamott, writer

“I am your mother, the first mile of your road.”  –Kelly Corrigan, novelist

“A mother understands what a child does not say.”  –Jewish proverb

“Kids spell love T-I-M-E.”  –John Crudele, columnist

“(Motherhood is) a choice you make every day, to put someone else’s happiness and well-being ahead of your own, to teach the hard lessons, to do the right thing even when you’re not sure what the right thing is…and to forgive yoruself, over and over again, for doing everything wrong.”  –Donna Ball, novelist

“The real menace in dealing with a five-year-old is that in no time at all you begin to sound like a five-year-old.”  –Jean Kerr, writer and playwright

“Raising kids is part joy and part guerilla warfare.”  –Ed Asner, actor

“Children are a wonderful gift.  They have an extraordinary capacity to see into the heart of things and to expose sham and humbug for what they are.”  –Desmond Tutu, activist

“Your children are the greatest gift God will give to you, and their souls the heaviest responsibility He will place in your hands.  Take time with them, teach them to have faith in God.  Be a person in whom they can have faith.  When you are old, nothing else you’ve done will have mattered as much.”  –Lisa Wingate, writer

“Rest easy, real mothers.  The very fact that you worry about being a good mom means that you already are one.”  –Jodi Piccoult, novelist

“The story of a mother’s life:  Trapped between a scream and a hug.”  –Cathy Guisewite, cartoonist

“Parenthood is sh**, snot, slime, fear, tears, spit, and spills.  It’s as intense as combat, which is to say hours of tedium relieved by moments of alarm and flashes of joy to remind you that you are alive.”  –Scott Simon, journalist

“Its a marathon; not a sprint.”  –Melinda Gates, philanthropist

“Parenting isn’t a noun but a verb–an ongoing process instead of an accomplishment.”

“You may not be able to leave your children a great inheritance, but day by day you may be weaving coats for them which they will wear through all eternity.”  –T.L. Cuyler, minister

HAPPY MOTHER’S DAY to all you uh-mazing women out there who wipe noses and tears, who holler and hug, and who are just trying, praying, hoping, and sweating it out as the best mother you can be for your children.

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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.



I could run away today.

I told you that I love being a mother.  And I told you that there are days that I don’t.

I do sometimes fantasize what it would be like to just travel, write, have some adventures (if I were truly that brave) and somehow make money to support myself.  To be my age, with life experience, wisdom gained, and little responsibility.  Not that I want to be IRRESPONSIBLE.  Not at all.

NOT that I don’t love my sweet husband or children or family life, even with the hot minivan and all.  Not that I don’t have a million zillion things in this life to be grateful for.  Not that I want someone else or different children.  I am NOT saying that.

I just sometimes want to feel that carefree feeling again.  To not worry or feel the mom-guilt or wife-guilt about what I do or don’t do in my roles. To not always think about how I need to change this or that, and finish those scrapbooks (where are they?) and try harder, and be more patient, and give more of myself, and meal plan and schedule plan, and life plan.  (I’m a planner by nature but sometimes I want to chuck my old-fashioned paper schedule into the Pacific Ocean. But then panic would set in and it would get ugly.)

Do you ever feel this way? EVER?  Do you ever fantasize about those days before kids when you had 54 hours in a day and all you cared about was seeing your spouse at the end of a workday? What did Chris and I do with all our time? We ran together, we trained together for our first marathon, we travelled,we slept on Manhattan Beach on Sunday afternoons because we just FELT LIKE IT.  Ahhhhh…..


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.





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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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.