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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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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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,

Jessica

 

 

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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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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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Ryan’s Birth Story (Part 3)


THE NEW DIAGNOSIS

5 weeks old

THE phone call

Dr. Flores’ words

Chris took call

Results were positive

Prader-Willi syndrome

A lifelong disability

Life-threatening illness

Scoop up Ryan

Hold my baby

Cry many cries

Chris and me

Bonded so closely

A new journey

A new family

Luke, Luke, Luke

How to cope

What is next?

PWCF Director calls

A mentor mom

A support group

Appointment with expert

Appointment with geneticist

Appointment with urologist

Specialists, specialists, specialists

Growth Hormone Therapy

Shots every night

New OT Sara

New PT Rosemary

Therapists every day

Lots of exercises

Get stronger Ryan

Wake up mouth

Wake up body

Please wake up

I will never forget the night our pediatrician called to tell us THE NEWS. We had been home with Ryan for a week or so. The phone rang and the caller ID told us it was the doctor. The answer. The future.

Chris told me when he hung up with sad, soulful eyes, “It’s a YES.”

I ran to our bedroom where Ryan was sleeping peacefully on our bed, and quickly scooped him up in my arms.  I said,” I will take care of you, I will take care of you…” Over and over I said it as the tears fell onto his baby blue sleeper.

Chris immediately called and left a message with the PWSA (USA), the national organization based in Florida for Prader-Willi syndrome. We received a phone call back the very next day from Lisa, my new “mentor mom,” from the Prader-Willi California Foundation (PWCF).

Her message to us was, “Congratulations on the birth of your new son, Ryan.”  She did not say, “Oh, I’m so sorry about your son and please call me back.” There was warmth and help and support waiting in the wings for us. We soon found out that Lisa lived 10 minutes away from our home.  This was one of many signs that God was taking of us in the midst of this unthinkable crisis.

When I was finally brave enough and strong enough to read about PWS, this is what I read:

  • rare genetic disorder, a spectrum disorder
  • occurs in 1 to 12,00 to 15,000
  • chromosome 15 affected
  • lifelong, life-threatening illness
  • symptoms include hyperphagia/excessive eating (WHAT?)
  • behavior issues
  • social issues
  • medical issues
  • parents and caregivers experience some of the highest levels of stress
If my emotions were in complete charge, they would have screamed,”How is a mother supposed to deal with the fact that her precious baby is destined to become morbidly obese, mentally-challenged, lonely, and die early?!!!!”
But thankfully, by the grace of God, and a supportive, wise husband, my emotions did not get the best of me.  Together, Chris and I went into high gear to do all that we could and should for Ryan.

The specialist appointments began. Endocrinologist. Geneticist. Urologist. Pulmonologist. A new OT started coming to our house, another ANGEL, named Sara.  A new PT (physical therapist) started coming when Ryan was two months old.

Ryan began receiving growth hormone (GH) nightly when he was 10 weeks of age. We had to give him a shot EVERY NIGHT (and for the rest of his life) to help him gain lean muscle mass, become taller, and help increase his body’s growth hormone levels. (Can you imagine how thick-skinned again we had to become to deliver shots to Ryan’s little body…every night?!)

And so our new and unique journey began…

We were “special needs parents.” We had a son with “special needs.” An entire new world just opened up for us.  We were about to meet some amazing families in the PWS world and the special needs world at large.

We humbly told all our family and friends about Ryan’s diagnosis.  From the start, we embraced our new life with Ryan, adopted a very open attitude, and shared our story freely.  We told ourselves, “We are not going to shy away, pretend it does not exist, or alienate others from helping us/supporting us/loving on us, by keeping it a secret to ourselves.”

We accepted quickly that we would need help, lots of help, throughout our journey with Ryan and Prader-Willi syndrome. We were bonded together, we had our faith and family, we could confidently take baby step after baby step. And we did. We still do.

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Ryan’s Birth Story (Part 2)


THE PEDIATRIC WARD

Only few days

Actually few weeks

Gavage tube feedings

Pumping breast milk

All the time

OT trains me

OT is angel

More tests run

Prader-Willi syndrome?

Doctors think not

First test negative

Second test run

Luke with Dad

Luke needs Mom

Lots of visitors

Lots of gifts

So much support

Prayer, love, care

Amazing kindnesses shown

Ryan can’t nurse

Still can’t suck

NG tube feedings

Nurses who care

Nurses who teach

Nurses who love

I love nurses

Sometimes he’s awake

Sometimes more alert

Still precious baby

Surgery is possible

Surgery is scheduled

G tube in

Lets go home

Home please home

I lived for 27 days in Little Company of Mary Hospital with Ryan. It felt like an eternity to me.  Waiting and watching. Questions and no answers.

The doctors offered theories as to why Ryan was struggling and weak.  Maybe I got a virus when I was pregnant, and in 6 months he will be “normal?”  Maybe he was premature and the dates were off? I knew they were not!  Maybe he was SGA—small for his gestational age and eventually he would get bigger and stronger?

On Day 4, in walked Camille, Ryan’s new occupational therapist (OT).  She was an angel. I think she floated in. She was this petite, Italian woman with dark hair and a big smile.  She was given to Ryan, to us.  Her job was to do exercises with Ryan’s lips, cheeks, mouth, and jaw in order to strengthen them to be able to suck. I grew in appreciation for the infinite number of things that must take place for a baby to be able to suck, a basic function of a newborn’s life.

As Camille pointed out to me that what Ryan’s body was NOT doing and what it SHOULD be doing, I lost it. I could not be strong mama anymore and suck it in. My baby was broken.  This was when I first heard the term “hypotonia” which means low muscle tone. Hypotonia would become synonymous with Ryan as I explained his condition to EVERYONE.

I quickly had to give up the idea of ever being able to nurse Ryan.  I made peace with it. I had to.  I was a mom already, so I knew that bonding with my child went way beyond nursing. It did and it does.  Camille reassured me of that.

The floodgates of love and support came raining down on us during this very difficult time. Gifts, food, calls, cards, prayers, babysitting.  Visits from family, friends, new friends, old friends, pastors.  Ryan was the first baby born in the new church we were a part of.  Our new family there treated us with the utmost kindness and care. And they hardly knew us.

My best friend even flew into town to SLEEP in the hospital bed for me so I could be at home with Chris and Luke for a night. The next morning as we were driving back to the hospital, Luke,age 2,  asked, “Do you really have to go back, Mama?” More tears. His tears. My tears.

Chris diagnosed Ryan with PRADER-WILLI SYNDROME.

He had been searching the glorious world wide web and found it.  Ryan’s hypotonia, undescended testicles, and “failure to thrive” all directed to this diagnosis. But the doctors didn’t think he “looked’ like a baby with PWS. Chris asked for him to be tested anyways.  The first test was negative. Chris insisted they run the second test, a DNA test. We needed a definitive answer.

Ryan’s little mouth was not getting stronger.  We needed to go home.  Luke needed me.  Chris needed to go back to work.  We needed to start our new life as parents to two delicious little boys.  It was advised, absolutely necessary really, to give Ryan a “G-tube,” a feeding tube.  Surgery was scheduled.  Chris and I learned how to feed Ryan carefully.  The nurses were extraordinary to our family throughout our stay, but they knew it was time, too.

Home please home.  Yes, we were finally released  to go home. But we still had no answers…

FOR MORE INFORMATION ON PRADER-WILLI SYNDROME, PLEASE GO TO http://www.pwcf.org/pages/Body.htm


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