Thank you!

For those who have checked in on Rylee over the weekend-she is well, thank you for the calls, texts, and prayers.  She had a minor outpatient procedure Friday.
We left home around 7am after getting Ryann off to school, arriving at Nationwide around 1030am. 
The physical medicine doctor and their staff have been wonderful to us-going the extra mile to ensure Rylee's insurance would cover the procedure.  I don't think they could have treated us any better if we were family.
The procedure was brief and almost pain free for Rylee---she handled it so well.  We hopped back in the car headed for home only to realize I had left my license at the hospital (wish they could find my marbles too!).  After a quick dash back in and a drive through White Castle (my first) for lunch we somehow managed to beat Ryann home from school!

Rylee handled it all like a rock star...Aaron and I however felt a bit like groupies the day after (minus the mysterious tattoos and bad 80's hair).

We should know in the next week if it worked-and if it does, we will have one more avenue to offer Rylee more range of motion.  Thank you, thank you, thank you for the encouragement and support.

I hope to post more this week-we've had a crazy few days and I'm prepping for a certification test so bear with us, but I have several more things to share.  In the meantime, I leave you with last year's homemade Halloween outfits...keep checking back for this year's pic!

Ryann as a ghost, Rylee as Elliott from E.T.
Halloween 2012

Will try our best to get a photo of the Pumpkin House too-with RyleeBug's favorite pharmacist and the town's Mayor.

For those moments Hallmark just doesn't cover it...

ro·mance noun

a love affair

ardent emotional attachment or involvement between people

 

Romance can have many forms. 
There's the Hollywood version-the man realizes too late how perfect she was for him, cue music as man runs through airport desperately trying to locate his love.  The leading lady realizes her life of success and independence is nothing without the mysterious man she met on the subway. 
In literary circles, romance comes across as a morose, wealthy and despondent bachelor-the Darcy figure women dream of.  Maybe the romantic hero of the story meets an untimely death as seems to be the unfortunate scenario in most Nicholas Sparks' books.

As a newlywed I had an idea of what romance was, could be.  But somewhere along the way-in the midst of diaper changes, paying the bills, work, unending nights of no sleep, worrying about the health of our children-my definition of romance has changed.

So, on the anniversary of our wedding fourteen years ago-let me tell you about my romantic husband.

I'm married to a man I respect.  He's hard working, fair minded, ethical in his dealings with others, direct, and expects that from others.  When Aaron says he is going to do something-he does it, whole heartedly, to the very best of his ability.
I trust my husband implicitly. 

My husband may not be the stereotypical romantic-roses, dates, flowers, and love notes...but his romance is better in my opinion.  Fulfilled promises...in sickness and health, for richer and poorer.

He works every day, never complaining, so I can take care of the girls and have time to advocate for Rylee.  Every night he comes home to us, world weary and in need of his girls. 
He loves each of us with a depth that only increases as we mature in our relationship.
He puts up with my crap.  Which isn't excessive (in my opinion) but may explain why he says our marriage has been the best two weeks of his life.  For the record, he also states that in his old age he is never getting hearing aids.
No matter what the situation or crisis I know without a doubt that we are in this together, and he's always got my back.  In fact, sometimes when my soul is too weary he carries me on his back-shouldering heart hurts and world worries.
I never fear he will leave me.  (Although if we ever divorce, my mom claims she gets Aaron in the settlement.)
My husband is so romantic that there are parts of his personality, his heart that he only allows us to see.  He finds time to give us the very best of himself.
He realizes my deep seated desire to serve others like our own little family.  He gives me the ability and encouragement to dream of what could be possible.  He embraces who I am and expects me to be myself.  Loves me because of everything, not in spite of.
My romantic husband realizes that while I love flowers-I'd rather have practical gifts.  The dishwasher one year for Christmas was a huge hit.  The riding lawn mower for Mother's Day, eh-maybe not so much.  Garbage disposal for my sink this year-another winner.
Aaron is so romantic that he bought my engagement ring and paid it off for a year before giving it to me.  The day it was paid for, he asked me to marry him...on Ground Hog's Day.  Not romantic you say?  I'm thankful he was so excited and enamored that he could wait no longer.
He will take the dreaded "Walk of Shame" to buy the things I need, but forgot in my addled state to pick up.  He volunteers to purchase Midol in bulk.  (This veers from romance and possibly boarders on self-preservation.)
He loves that I bake for others-as long as I make a double batch in order to leave one batch at home.
Aaron is steady, solid, dependable.  He acts with his head first and heart second-which is the exact opposite of me. 
There is no one that can make me laugh like my husband.  I'm not talking giggle and sigh type of laughter.  I mean the type of laugh that catches you off guard in the middle of a disagreement and causes you to forget your point.  I'm talking about the type of laughter that makes you laugh until you cry, your sides cramp up, fall off the chair laughter. 
He loves our girls.  He wants to fix everything but has learned sometimes the best ability you can have as a daddy to little girls-is availability.  He takes them on date nights, has slumber parties, watches musicals (pretty sure he's asleep but that's beside the point), and falls prey to Ryann's schemes every single time.
One gentle touch or look across the room-and we can generally tell what the other is thinking.
He tries hard to make the right decisions-covering things up in prayer and including me in his thoughts and plans.

Romance these days for me-is finding joy and contentment in the mundane.  Discovering and discussing topics with such passion and humor that you feel better after the interaction.  Realizing you fell in love with a sweet boy that has turned into a man deserving of respect, who carries himself with integrity. 


Romance isn't just in the grand, expensive gestures-it's found in the day-in-day-out grind of life.  The moments that remind you that somehow you were fortunate enough to marry someone who is your best friend. 
As I see him tuck in the girls, brush their hair away from sweaty foreheads. 
When he climbs out of bed one more time to check on Rylee or make sure all the doors in the house are locked.

Young girls dream of and get caught up in the dazzling, momentary spectacles of romance displayed.
A wife in the midst of a love affair with her husband is caught up in the long lasting expressions of life forged with shared battles and is tempered with humor conveyed.

To my husband-I love you and cannot imagine sharing this life with anyone but you. 

 

A day in the life...

 
A quick snapshot of Rylee's back to school shopping trip this fall.  My mom had "parked" her while she was looking for bargains.  The photo op was too good to pass up! 
Seriously thinking RyleeBug has a career future in modeling and PR.  Also pretty sure that dog appears to be sniffing her (Chick-fil-A lunch?).

Shortly after this picture my mom-who is just out of the photo frame-turns around in a panic because she had 'lost' Rylee.  Needless to say we are still teasing her about that one.

Bringing it to the masses people...
Equal opportunity modeling for everyone.

(Next stop-Abercrombie & Fitch I hear they need some PR education regarding their models! grin)

Be sure to check back late late tonight or early in the morning-I've got another big blog post simmering in my head itching for relief via the keyboard.

And another thing...

I've hesitated to write this post, because frankly I wasn't quite sure where to begin.  The whole experience remains jarring to my sensibilities.  In nine years Aaron and I have been asked a lot of questions about Rylee.

Seriously...a lot.

Occasionally rude, barely appropriate, often ill-timed.  While we usually stop and kindly inform people about advocacy, people first language, and the importance of individuals living in their community-every once in awhile there are comments and conversations that cause you to catch your breath, count to ten, and hope and pray that you make it to your car before crying or cause you to contemplate jail time for slapping someone across the face.  I mean seriously, that's just a misdemeanor right? 
We've yet to fully get over the fact that people, often strangers, feel the liberty to not only utter these questions or comments but then feel the need to give us advice or share their opinions.

Exhibit A
Rylee and I were shopping commandos two weeks ago. 
Our target-"upscale shopping" as in, not Wal-Mart. 
The mission?  Locate and secure the intended hostage-the sale item, men's Docker's dress shirts that are not only wrinkle resistant but impervious to Sunday dinner stains.  At a sale price of $28 each, we braved the light rain and rushed inside.  As per the usual marketing M.O., the department store had squirreled away the item in question-making sure that I had to pass by full price pleated slacks (Really? Women still buy these for men?  Tim Gunn would be appalled!), ties and socks that charge you for the celebrity name tag rather than the quality, and men's scent spritzers that a case of Juan Valdez coffee beans wouldn't let you forget.  There, in the back I see our target.  I maneuver Rylee's wheelchair around the packed aisles-because most department stores think they are ADA accessible if you can get through the main walkway.  People with disabilities are often relegated to asking for assistance unless all their needs can be served by end caps and one half of a clothing rack.  Great if you need shoe strings, cuff links, or an "As Seen on TV" item. 
As we are working our way through the racks and display maze, I notice a couple in my peripheral.  They've been following us through the store-and now seem intent on intercepting our path. 
The lady is moving fast for her age-maybe she and her husband really need those pleated slacks?  She suddenly says, (brace yourself folks!)
"Who are YOU to bring a child like THAT out into the community?" Emphasis hers.

My first reaction was to turn around and look.  Maybe I had picked up a child that didn't belong to me?  Nope.  Just me, Rylee, and two Docker's 16 1/2-36/37 dress shirts.

At this point, we were cornered.  We're tucked into a corner and Rylee's wheelchair has been ensnared by a rack of Donald Trump menswear.  The lady's husband looks mortified already, as he sheepishly takes a few steps back.  The lady in question, leans in to repeat the question. 

Taking my slack jaw, gaping mouth countenance as an invite to share her opinion-she proceeded to stand for a good five minutes explaining to me why children like "that" have no value and should be kept where they aren't seen.

Quickly gaining my wits, composure, and mouth all at once-I pulled out one of the kindest responses I could think of-reminding her that it wasn't 1930 when she, by the looks of it, grew up.  People with disabilities are not relegated to an institution and cared for by strangers, only visited at major holidays or when a family member is reminded of their guilt.  I quietly told her that we value Rylee and she holds a very important place in our family.  While she may only want to see her disabilities-we recognize and celebrate the value she brings to all those that know and love her.
As she interrupted to inform me what should be done with "that" child-I reminded her that society has changed and evolved to have space for everyone...even those of such distinguished age as herself. 

Smelling of White Powder and Rolaids she huffed, then puffed, and turned to trot away with her hen-pecked husband in tow.  Reeling for a moment I looked down at Rylee who picked that moment to look at me and gift me with one of her rare crooked grins.  Yep, we were still standing.  God's still on the throne and my integrity was intact.  Although I won't lie-I totally contemplated creating a domino effect with the Donald Trump dress shirt display cases...but I figured the guy already gets enough bad press.  Didn't want to add insult to injury-literally.

So to "The Lady in Question" let me answer your question.

Who am I to bring a child like that out into the community?

I am a wife, mother, friend, and warrior.  My docile demeanor hides a momma bear so fierce I once looked into the belly of the beast (WVDHHR and legislature! grin) to make sure Rylee and others like her in our state maintained their services.  I can run on three hours of sleep for months at a time-granted, it ain't pretty.  I've been known to take off work to babysit children with disabilities...for free (gasp!).  I am a veracious reader, with a constant "you can never fill me up" attitude to learning.  When I'm stressed I bake and then bake more, then make homemade bread just to knead out my tensions.  I have a self-depreciating attitude which often means I'm underestimated.  I lose my temper about three times a year.  I make mistakes and while I always learn from them, I've found not all mistakes are easily remedied.  I am learning to not always naturally take the blame when things happen.  I am slowly realizing I can't control other's opinions of me.  When someone questions my integrity it hurts every part of my being.  I dream of traveling one day-and meeting Sir Richard Branson who will love my idea of making planes accessible for people who want to sit in their wheelchairs during air travel.  (I mean really, we put men on the moon and he's planning commercial space travel-and we haven't figured this out yet?  I've got ideas mister, I mean, Sir. )  I love sneaking away with my husband, still laugh at his jokes, and find that it's a joy to be married to your best friend.  I am scheming how to get back to Jamaica to care for children with disabilities.  I often type faster than my mind can process.  I am proud of each of my girls and our family.  I am addicted to Ikea.  Seriously.  I refuse to believe we are "special" because we have a "special" child.  All children are special, gifts from God-and we are just ordinary people living an extraordinary life...but heck, yeah-you can pay for our family meal anytime-but only if you are doing it because you think we rock, not because you pity us.  I have a deep seated, heart knowledge that God is in control of our life and He "has plans to prosper us, not harm us"-we've seen Him in action.  I've been known to tear up during Hallmark commercials and any YouTube videos involving military reunions.  I tend to be too trusting.  I whistle like a dervish and can remember and sing a song for any life situation.  I love with all my heart.

And "that" child?
She has a name. 
Rylee. 

"That" child brings out the best in people who know and love her.  This child continues to defy all medical odds.  She loves music-especially Swahili (who knew our Tanzania friends had such an impact?!) and Irish tunes.  She has beautiful big blue eyes, the kind that make your heart realize that sometimes, when a little girl has eyes like that, words just aren't necessary.  She has sandy hair and long lanky legs like her daddy that, true to her personality, cannot be tamed or fully understood.  She vocalizes her needs and dislikes.  Rylee has a funky fashion sense ruled by bright colors and layers.   She isn't defined by her diagnosis but rather by who she is to those that love her...daughter, sister, friend, granddaughter.  Rylee is a best friend to Miss Livie Lou-and they try to get together at least once a year to see each other.  She has a gaggle of Groupies who love her, pray for her, and are invested in her success.  Rylee inspires others to do great things-ask the LadyBug Club in Florida, her parents and family, those impacted by the resource fair and Compassion in Action, even her medical team who blur the lines between professionalism and family, just for RyleeBug. 
She confounds, astounds, and rebounds.  She is a fighter-a tough cookie.  Rylee can snuggle up with you in such a sweet way that you forget the cold outside, your hurt heart.  She reminds us to stop, let go of the materialistic, the unimportant, the 'static' of life-and focus on what's most important in life.  Unconditional love and acceptance. 
"That" child isn't a rare ICD-9 billing code, black letters on white paper.  Rylee isn't an annual budget and her life can't be templated into an IEP or IPP.  She's not a patient or a "non cost effective" consumer within the system of care, a stereotype discussed by pundits. 

She's Rylee. 
She's ours and we love her, as any parent should love and care for any child regardless of their age, diagnosis or prognosis, or even if they're (gasp!) "normal."

So, to the lady in the department store...I wish you'd had time to get to know who we are.  Maybe we could have changed your mind, or at least caused you to broaden your opinions a bit more to allow room for ours.  While your words and actions towards my daughter were momentarily earth shattering...we're still here. 
Making things work. 
Impacting others. 
Ensuring your archaic ideas don't encroach back into society's norm. 
Still thankful for the way God blesses our life daily and surrounds us with a cocoon of support. 
I'm so thankful you don't have the right to determine how we live our life as a family.

And p.s.-We also don't believe in geriatric euthanasia, so I'll be expecting my thank-you card shortly.

Miracles in the moments...

miracle \ˈmir-i-kəl\
an extraordinary event manifesting divine intervention in human affairs

an extremely outstanding or unusual event, thing, or accomplishment

a divinely natural phenomenon experienced humanly as the fulfillment of spiritual law

 

When I found out I was pregnant with our first daughter, Ryann, I became a little obsessed with feet.  Early on in my pregnancy it was because there were two things graphically clear in her ultrasounds-her waving hair (seriously, I place full blame on the midnight Mexican food runs) and long lanky feet.  In the last trimester of my pregnancy my obsession felt a bit more like a possession!  Night and day she rolled and moved, assuring me of her desire to vacate her cramped quarters.  As I talked and sang to her throughout my pregnancy her feet kept up a frantic stucatto, somehow dancing around my belly and heart all at once.

Ryann made her appearance eleven years ago this week-as easy in birth as she was in pregnancy.  She arrived so quickly, politely ensuring we never missed a meal.  As they handed her to me I remember inhaling deeply, introducing myself to those big brown eyes and then touching, kissing, and counting each finger and toe.

What an amazing miracle this little person was that God allowed me to carry and nuture for ten months (only men say nine months!).  Every bit of her identity already inside of her-a pint sized, fully equipped person with unique DNA, personality, and fingerprints. 

 

Miracle.

 

My experience was no less impactful with our next two precious little girls, Rylee and Kaymaen.  While they didn't keep me up at night with movement, their sweet chubby bodies-right down to those hairy little heads!-were perfectly made, "fearfully and wonderfully," just as God intended.  Every toe and finger imprinted with a pattern my heart already knew and understood.  God knew the number of hairs on each head, all the days He had planned for each-as He whispered to our aching hearts.

They both defied all odds...unbent, unyielding, and undefined by their diagnosis...but rather by who they were to those that loved them so very dearly.

 

Miracles.

 

I know we've mentioned "miracles" before in previous blog posts.  Yet, somehow I thankfully can't seem to get past these quiet moments so many walk by. 

Miraculous moments unseen, unnoticed, unremarked upon.

 

We all crave them.  Those "outstanding moments" that can only be described as "divine intervention." 

 

While waiting for that Dead Sea moment to part turmoil in our life.

While crying out for a heart breaking diagnosis to be a mistake.
While watching a loved one make decisions that you know will only hurt them.

 

But here's the thing...what are we missing in the meantime? 

 

Experiences that strengthen our resolve.

Miracle.

Having additional time to make ammends, correct past regrets.

Miracle.

Learning to love someone with an abiding unconditional love.

Miracle.

 

Everyone has different miracles in their life.  An "extraordinary event" that causes them to catch their breath.  A moment so seared into the deepest part of one's heart that its meaning redefines your very being.  An "accomplishment" that reminds you of who you are...and who you have the potential to become.

 

We embrace fully and are so thankful for the miracles in our life.

A marriage tried by fire, shaken with sorrow, and full of laughter and acceptance.

A friendship with a spouse who knows the darkest parts of you, yet loves you because of it...not in spite of it.

Two imperfect people meeting and making three gloriously beautiful, sweet daughters-heads full of hair, chubby dimpled bodies, and lanky legs.

Finding grace and mercy in the midst of the mind numbing, heart breaking sadness of losing a child.

Friends that somehow became family along the way-standing in the gap for us, lifting us up constantly in prayer, sharing each sorrow with us, and cheering with joy for us.

Understanding that throughout the tapestry of our family's life is this common thread of faith and hope in Him.

 

Miracles don't always come in big earth shattering packages. 

 

Jericho's walls crumbling at a trumpet sound.  The sick receiving a Savior's touch and being healed.  A little boy conquering a giant with a sling and pebble, then later becoming king.  A man stinking of three days death, walking out of a tomb alive.

 

Most often miracles move in small, quiet ways...not in the storm, the fire, the wind...
but in the moments of stillness where you realize the life God gave you...
is the miracle.

 

Jeremiah 17:8-9

Blessed is the man that trusteth in the Lord, and whose hope the Lord is.

 For he shall be as a tree planted by the waters, and that spreadeth out her roots by the river,

and shall not see when heat cometh, but her leaf shall be green;

and shall not be careful in the year of drought, neither shall cease from yielding fruit.