"To live is the rarest thing in the world. Most people just exist." - Oscar Wilde

Halloween 2015 as Where's Waldo

Rylee”Bug” Erin Davis, 11 year old daughter of Aaron and Deborah Davis and little sister to Ryann, passed away in her parent’s arms on Thursday, December 17th. Rylee was a much loved daughter, sister, and friend who impacted the lives of everyone who met her.
Rylee taught us how to love unconditionally and unreservedly, holding nothing back. She showed us how to live life to the fullest, in the moment-with no regrets and no fear. Each day with her was a joyful lesson as she amazed each of us and defied all odds with her sheer tenacity and sweet spirit.
We will never be able to thank our church family, friends, or the community enough for the way they loved Rylee-as a young lady with bright blue eyes, big curly hair and the ability to bring out the best in those who took the time to know her.

To the circle of people who loved on her regularly we are so grateful for the love and gentleness you showed to her-MawMaw Vivian, Gigi, Granny Franny, Fric & Frac, ClaraBell, Troy Arron and her entire care team-with special thanks to Auntie Charlotte, Dr. Pippa, and Nurse JudyJudy and Nurse Becky. It is impossible to mention each person by name but our family will never forget the folks who fell in love with our sweet girlie: our friends who raised their children to see Rylee as herself not a diagnosis, her entire team throughout the years who gave her care grounded in humor and hope, our entire church family at Antioch, and of course all of her “RyleeBug Groupies” who span states, countries, and continents.

What an awe inspiring thing to be able to say, “Our girl lived well and she was so loved.”

Hall’s Funeral Home is handling arrangements. A service to honor her life well lived will be held Monday, December 21st, 2015 at 2pm in her home church Antioch Missionary Baptist Church on Little Fudge Creek in Ona, WV with graveside service to follow at Spring Hill Cemetery. If you’d like, please wear a spot of red in honor of Rylee.
We hope the services will give everyone the ability to remember Rylee’s impact and leave each person with the impression of peace and joy she brought to us.

In lieu of flowers, we ask that folks help us honor Rylee as we continue to minister to families like our own.
Checks should be made payable to “CIA (Compassion in Action) Project” and mailed to:
First Sentry Bank
PO Box 790
Barboursville, WV 25504
ATTN: Fran Howard

While we will always miss our sweet girl we revel in the thought that she is running with her sissy and Jesus in Heaven. Psalm 139:13-16

We hope you will leave us comments on the blog about the impact Rylee made to your life.  Comments and notes to our family may also be left at:
http://www.timeformemory.com/fh_obituary.cfm?obitid=43858&fhid=16&locationid=16

For those that know, love, and prayed for Rylee-
and even those we may never meet personally-
please feel free to share her blog URL www.ryleebuggroupies.blogspot.com
and the above photo on your social media with the hastags:
#red4rylee #RyleeBugGroupies #Psalm139:13-16
The more folks who visit her blog the more her blog map gets covered with red...it's a fun and great way for her big sister Ryann (and us) to see her sister's impact.

For such a time as this

https://youtu.be/kUeTGVF9TJk

I'll write in more detail when I have a moment to collect my weary thoughts.  Rylee is dealing with her annual spring allergy/seizure cycle and we are all exhausted.  In the midst of it all WVDHHR submitted their 5 year application proposal for the I/DD Waiver Program.  This program is what allows West Virginia residents with intellectual and developemental disabilities to live in their communities where they are known by name and valued.
The current proposed cuts will decrease supports and services by half in most cases. 
I had an opportunity to speak publicly on the Capitol steps about what this means to those of us accessing the services for a loved one.  I've been proud to be involved in several advocacy and education events in our state since having Rylee.  I've never been more honored and proud to stand side by side with self advocates and other parents as we fight to affect positive policy change for so many throughout our state.

If you youtube search "Title XIX waiver" you'll find all the speeches from the day.  I hope you'll take time to watch not just my speech but all of them.

Miracle in the Moment

I've no idea what family night looks like in other homes - but in ours, it generally begins with cooking together seasoned with laughter.
(Special thanks to my friend Sarah for capturing our crazy!)

Love our evenings at home together.  We may not have it all together, but when we are together it seems like we have it all.

Sometimes you never know the true value of a moment until it's a memory. 

The gift of Contentment

Like everyone else, we are right in the midst of the holiday season. 
Aaron outdid himself again this year with his deep fried turkey on Thanksgiving day and we enjoyed unhurried visits from friends and family.  The girls had the week off from school, Aaron and I both had a few days off work, and we all throughly enjoyed relaxing together.

Last week we spent a few evenings putting up the Christmas decorations while trying to find the best Pandora holiday music channel.  I rounded off the weekend by getting distracted, leaving a faucet running, and flooding our upstairs bathroom.  Thankfully my husband laid our tile correctly and we discovered happily my grout work wasn't too shabby, which equates to no permanent damage.  I am however up past midnight with my snuggle bug Rylee...washing all the wet towels and laundry from the debacle.  In between laundry loads I'm sitting here under a warm blanket, steaming Irish tea in hand admiring the Christmas lights.   I will admit to late night Netflix binges of any BBC programming.  Often the allure of a colorful pie chart has me doing family budgets on my Mint app while listening for Rylee's slow, clear breathing.  Or you'll find me curled up with yet another five pound book that I will devour in the course of one weekend up with Rylee.  But, I'm also just as happy to sit quietly thinking.

In the midst of this holiday season I am overwhelmingly grateful for all the blessings we've been given, especially this year.  After squirreling away money for several years, Aaron and I had the opportunity to do our second favorite thing together - traveling.  We spent ten days together laughing, getting into hilarious predicaments, and being thoroughly content wherever we went.  As I'm sitting here looking at these pictures and typing these words, I realize the previous sentence also describes every day of our last fifteen years of married life.  Granted the scenery, lighting, and wind in Ireland make the photos turn out a bit better...but even with the dishes stacked, a flooded bathroom, and piles of laundry it's rare to find either one of us without a goofy grin. 

How grateful I am to be married to my best friend, partner in crime, and father of our sweet girls.

This year Ryann discovered a passion for cross country running.  It's been a joy to watch her fearlessly jump into something new with little reservations.  She really enjoyed pushing herself to do better each time and we are so proud of her and the discipline it took to run several miles each day.  I also had the opportunity to take her to Washington DC with me over the summer when I attended the annual NACDD Conference.  A good friend and her daughter went with us - and we had a great time.  They took in the sights (and the summer heat) during the day, and when my meetings were over we had a few adventures on the subway, Rita's Ice in Chinatown, and just enjoyed making memories together.  Ryann continues to be a constant source of hilarity in our home - the frankness of her momma combined with the dry humor of her daddy ensure it's never boring around here.  She continues to monitor Rylee's clothing choices and makes sure Rylee has access to all the "cool music" the "kids these days" are listening to.

On a health level, Rylee has had an unusually rough year.  Folks forget that while she has a disability, she still experiences the same things a "typical" child her age goes through.  Ten year molars have been rough, along with other issues - but overall, we are still extremely grateful to say we've been able to treat all issues at home with the guidance of her phenomenal medical team.  There is absolutely no way to properly express enough how thankful we are for the folks God has put in our life because of Rylee.  She continues to grow in length, so long and lanky like her big sister. 
What a gift she has been in our life; teaching us daily to slow down, find joy in simple occurrences, and celebrate what others consider mundane. 
What a privilege to raise both of these amazing young ladies together with the help of our friends and family who support us, encourage us, and love us in ridiculously bold ways. 


If a Taylor Swift song and YouTube had a baby, it would look like these leggings. 
Thanks Aunt Rebecka for keeping her swanky!

While incredibly thankful, grateful for the way God continues to bless us - we also frequently realize, take note of the fact that a deep seated contentment has enveloped our home. 

Thankfulness seems temporary, an in the moment realization of gratitude. 

Contentment is the firm acknowledgement and satisfaction of reaching capacity.

Contentment should not be confused with complacency.  In fact, in our home, this contentment makes us desire to continue to serve others, love others as completely as we've been loved. 

Contentment makes you unafraid to open your heart. 

Contentment makes you hungry to follow your passion, that idea or goal that makes your heart beat faster and awakens you in the middle of the night. 

Contentment makes you confident enough to try, fail, dust yourself off, and try again.

Contentment makes you realize you've reached your capacity - in love, in joy, in understanding, in thankfulness - in such a manner...that it overflows to a point that you want, you need, to share it with others.

Imagine if every family like our own felt as loved and supported as we've been.

We have some ideas of where God is leading us as the next year approaches. 

Anxious to continue to grow and learn.  Incredibly grateful and content in the thought that He has plans for our little family.

Jeremiah 17:7-8

 

Halloween 2014

Another successful Halloween is in the books! 
Ryann decided she was old enough to go candy begging with her friends.  She spent her first Halloween trick-or-treating without ol' Dad and Mom.  She had great fun with her school buddies and hauled in a stash of sugar large enough to last her through...well, let's be honest, no matter the amount...if it makes it to the end of the year we all will be in shock.

Aaron started early this year making Rylee's costume and then we finished decorating it in a bit of a frenzy right before treating time.  Always the handy man, he never ceases to amaze, coming up with costumes dreamed up - but he turns into a reality.

So, without further ado,

I give you

our Nerd and The Claw Machine.

Disclaimer: No child was harmed in the making or wearing of this costume.

Astonishing what cardboard, spray paint, duct tape, and imagination can accomplish!

2013

2012 Ghost & Elliott and ET

2013 Ballerina Bandit and Chicken Soup in a Pot (featuring Daddy as the Swedish Chef)

 



Husband & Wife

Early in our marriage - not long after having our girls, Aaron and I had the chance to sneak out with a large group of couples.  The majority of us were couples in the midst of the three ring circus of parenthood.  Conversation was dominated by teething solutions and breastfeeding hilarity.  Lack of sleep was a constant complaint, quickly followed by a sweet story about snuggling said crib jail breaker and then much ado was made over the sweet pacifier breath of our kids and the boys all rolled their eyes as the girls sighed in tandem while discussing the smell of Johnson & Johnson.  After the bills had been paid, the ladies all hugged each other before the men shepherded their wives off to their own demesne of domesticity. 
Fifteen years into our marriage it's a rare treat to spend time with the friends we have so much history with. We pass at church, phone call and Facebook each other if someone is sick, and plan well meaning lunches that never end up getting scheduled.  As much as I love my close girlfriends, and treasure time with them giggling - it's even more rare to have uninterrupted time away with Aaron.  Sure we sneak away like teenagers to movie date nights - but I'm embarrassed to say our talk usually centers around the girls' schedules, the advocacy I'm working on, his work travel schedule, and grocery lists.
Once a year we call in favors, and spend a night away within a few hours of the house.  And guess what?  The sky doesn't fall, the house doesn't burn, and our kids are still happily breathing on our return.  While happy for the respite and time to reconnect, however brief, we still felt a deep desire for more.
On our fifth anniversary we planned and schemed for a year to be away for a whole week.  We called our close friends the Carters and their family made our week hiking in Maine's Acadia nothing short of sublime.  We had a beautiful home to stay in and we traipsed around like teenagers with no plans except to visit at least two lighthouses a day, hike, and eat fresh seafood until we burst. 
The success of that trip galvanized our planning for the next one - our tenth anniversary was going to be a blow out.  God had other plans in mind and instead of purchasing airline tickets for Europe we were putting our home up for sale and planning to build our new one.  While we don't regret the practical decisions we made at the time for our little family, we promised ourselves we wouldn't forget our dream.
While not quite an official "anniversary trip" on technicality of the date, I'm ridiculously happy to say we just returned from...Ireland. 
(I still can't believe we did it, even when I see it in boldface type!) 

My built in GPS husband drove on the opposite side of the road as though born to it.  We went around the coast of the entire country (Ireland & Northern Ireland) and decided that if the trip had been any more perfect we would have thought we were in a movie. 

Looks like a movie set doesn't it? 

Ladies View, Killarney National Park

 

Our entire trip was full of sunshine (an unheard of number of days without rain), warm weather, great Irish food, music and of course the craic everyone talks about. 

 

Church at Kylemore Abbey, Connemara, Co. Galway

We flew into Dublin then headed south for our first night stay in a tiny town called Ballymacoda.  The farmhouse we stayed in was older than America.  The owners were extremely friendly and helpful, and we had a beautiful view of the beach across the street where we walked hand in hand that evening.   From there we headed out for the Ring of Cork, which we felt rivaled the much promoted Ring of Kerry.  A triathlon stopped us from spending a day in Cobh but Kinsale turned out to be beautiful.  We only scheduled the first four nights of our stay which ended up being perfect as we rounded the Ring of Kerry, took in Skellig Michael, and discovered veg mash in Kilkenny as a local attempted to explain hurling to us.  From there we found another back road up towards Killarney - I believe we stopped every quarter mile to take photos in the sunset light.
The next day we conquered the Cliffs of Moher - and we still can't believe there are no real set barriers on the Cliffs.  On our walk back to the car an older gentleman was busking, playing the penny whistle as though it had been attached to him his whole life.  The high sound actually carried all the way around the Cliffs - from the steep left side to O'Brien's Tower on the right.







Cliffs of Moher, edge of the Burren, Co. Clare

Musseden Temple, Castlerock, Co. Londenderry

From there we dropped into Doolin and decided to stay for two days, most of the first day spent on the Aran Island of Inis Mor.  We stopped in for craic that night at the local pub, only to be regaled by live music and an older gent who sang stories with a voice weathered by experience.  The history and architecture of Kylemore Abbey captured our attention and imagination for the day, and once again we had another beautiful old home to spend the night in.  The next morning reality set in that we still had so much to see, but unfortunately nowhere near enough time to see it all.  From Connemara we caught the main highway into Northern Ireland to see some sights and were surprised by the massive change in accent.  After days of the soft, melodic Irish lilt the Northern Ireland accent, to our ears, more closely resembled the Scottish brogue.  Here we caught the Giant's Causeway at early morning as the tide was leaving - reveling in the fact that we almost had the whole place to ourselves.  Then we braved the Carrick-a-Rede Rope Bridge and once again marveled at the weather and the clarity of the ocean water. I had my longed for Leap Year movie moment when a herd of dairy cattle crossed our path for a few moments.  Aaron even used our tiny diesel car to herd one stray into the next pen as the local farmer took off his cap to wave his thanks.

I cannot begin to even tell you, in words, the memories we made...

The sights - architecture fully intact dated hundreds of years ago weathering storms and holding life secrets not found in history books; turning a corner to find yet another ruined tower, fort, or castle covered in vines but somehow uncannily giving off a presence that made you feel as though the owners could return at any moment.  The unhurried gait of the locals as they stop to chat in doorways - cell phones an unneeded nuisance for most in rural areas.  Moms headed to weekday morning mass in Sunday best, heads covered. Shrines and holy wells along the back roads, trees decked in ribbons and shiny items as a reminder to the saint.  Cathedrals containing such intricate details you couldn't take it all in if you spent the whole day gazing in wonder.  Family cemeteries centuries of years old, yet still someone brings fresh flowers to honor the long passed loved one.

The smells - barley and oats destined for some one's glass in the form of some type of stiff drink, the brine of the ocean, the delicious fresh food that just came of the fisherman's boats, the damp moist smell of age; in the evening the warmth would slowly fade into a crisp fall air followed by the smell of burning peat in wood stoves and fireplaces; flowers everywhere, laundry on the line.

The sounds - the ocean tide and the birds that fed with the tide schedule, bleating of sheep, cows noisily letting their owners know it was time to be milked; accents - Irish, Northern Irish, Scottish but also the Gaelic of a sean nos singer, and the surprising melting pot of other languages-Poland, Slovenia, Iceland, French, German.  On the radio the 90's music listened to in high school, on the streets more traditional music.  Laughter and stories spilling out of the town pubs rife with craic. Bodhran, piano accordions, penny whistles, flute, mandolins, guitars and fiddles usually played with an abandon only matched by skill.  Constant humming of the locals.  Bark of dogs as they herd sheep or alert the owners of a stranger, followed by a soft command from the owner.  Laughter.

I will try to get some additional photos posted as we cull through our memory cards.  What a gift and joy to travel-but to experience a new culture, new sights with your best friend...well, honestly, it doesn't get much better.

Aaron and I love being Daddy and Mommy. 

But we take even greater joy in being Husband and Wife,

knowing that our strong marriage makes us a better team as we parent our beautiful girls. 

To all those at home who made this possible, our "Merry Band of Crazies" a list of folks that encompasses Rylee's medical team...thank you for encouraging us to do this.  Thank you for loving on and downright spoiling our girls in our absence.  Thank you for being so joyously excited for us.  If every family like our own had the support group that we do - imagine what could be accomplished.

To Aaron - thank you for giving me the gift of dreaming as we scrimped and saved together for years to make this trip a reality.  Thank you for helping me teach the girls to live life without fear, embracing difference, and relishing the excitement and challenges that come with change. 

"Twenty years from now you will be more disappointed

by the things you did not do than by the things you did do. 

So throw off the bowlines. 

Sail away from the safe harbour

and catch the trade winds in your sails."

- Mark Twain



#ThankfulTuesday

Never one to follow the crowd, we opt to eschew social media trends and embark upon #ThankfulTuesday(s). 
For those not "in the know," Facebook, Twitter, & Instagram feeds are flooded each Thursday with #ThrowbackThursday photos that generally involve horrendously bad hairstyles and ridiculously mismatched haberdashery.

We decided to kick off the first #ThankfulTuesday with someone who's been in Rylee's life since we brought her home. 


“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” - Maya Angelou


I won't give you the long, dramatic, three hour Gilligan's Tour about how Mr. Rick came into our life...what's more important is that we can't really remember a time when we didn't know him.

He will more than likely be mortified when he sees this post on the blog (Hi Rick!  See you soon! ) but despite his embarrassment we shall press on. 

In his town, anyone will tell you Mr. Rick wears a lot of hats.  Most know him as a pharmacist, owner of the soda shop, the town mayor, and of course the crazy Pumpkin House guy.
We are fortunate to know him as a humble man of integrity, quietly going about his work with a smile on his face and a kind word for everyone he meets. 
In the ten years we've known him he's encouraged us, prayed for us, and been a friend.  After filling a prescription it's not uncommon for him to check in a few days later - just to be sure Rylee's on the mend.
I wish I could more eloquently convey what his continued friendship and thoughtfulness means to us. 

Rick,
thank you for going out of your way to make each customer feel important, as though we all are part of your family. 
To your sweet, crazy, fun employees (especially Carolyn, Heidi, and Ms. Tubbs) we love swinging through to see you each month, in spite of the drive. 
(And seriously your corn dogs rival those at Camden Park!) 

You exemplify the best of small town living. 

"We raise our strawberry shakes to you sir!"

"A hearty 'here-here', and um, can I get a refill?"

 

Proverbs 17:17 - "A friend loves at all times..."

Road Trip (more to come!)

Here we go again...

blah blä/ an informal interjection

1.  used to substitute for actual words in contexts

where they are felt to be too tedious

or lengthy to give in full.

Just a week ago we were anxious to be out together. 
 

Ready for shopping trips, planning vacation, sunning at the park, spending lazy days floating in the pool, preparing the garden, and counting down the days until the end of the school year.  Unfortunately, this year Spring blew in fluctuating temperatures, high pollen count, and a respiratory illness for Rylee. 

One all too brief jaunt out to church and lunch at a local restaurant with friends - and the long awaited and much watched for yearly winter illness caught up with her. 

Our attention is now diverted to tracking a small pharmacy of medication regimens, tube feedings, suctioning and nebulizer treatments, positioning, percussion chest massage, and the realization that everything within a ten foot radius of Rylee smells of Vicks Vapor Rub. 
 

Pool floats, hammocks, and beach umbrellas have been temporarily supplanted by a thermometer, O2 monitor, and stethoscope.

The feeling of a gentle breeze ruffling her hair and the sound of our neighbor's wind chimes have been replaced by her favorite music and DVD which we hope drowns out the sound of the machine beeps and whirls.
 

Her occasional productive coughs and rapid breathing causes us all to live with our hearts in our throats and vicariously clear our own.  Normally on her blog we only discuss the positives...and we still maintain our sunny dispositions but will admit to a few dark clouds obscuring our horizon. 

Aaron and I continue to be thankful.  Thankful for the training of wonderful physicians and nurses who've taught us to do all this at home, hopefully dodging a hospital admission one more time.  Thankful for the help of a night nurse and my mom who attends to Rylee as diligently as I would, allowing me to rest my heart and mind for a few moments.  Thankful for a big sister who encourages and snuggles with her sister, undaunted by the unusual sounds and odors that accompany illness.  Thankful Aaron and I have great jobs-his allows me to be home, mine allowing me to miss work with no repercussions to care for Rylee.  Thankful for humor in the midst of everything.  Thankful for an accessible house that allows me to care for Rylee and keep her comfortable.
Thankful that while Rylee has a devastating disorder with no cure...she is still overall remarkably healthy and stable for the majority of the year.

So-temporarily-allow us to have the "blahs." 

I don't post for pity...if we need that we have a pity party easily assembled, "check please." 

Instead, I post to ask for an interest in your prayers and thoughts. 
We are on day four of treatment and are slowly seeing small improvement. 
Please pray our sweet Rylee feels better as we go through the weekend. 
Our faith gives us hope and grace but it is heart searing, mind numbingly difficult to watch and wait.
 

In the home stretch now...

Halfway through February and the "itch" has begun. 

It starts out as a desire to see green poking through the brown mud of winter and quickly moves

into a irrepressible need to spring clean months in advance. 

More recently the "itch" has manifested itself in the desire to wear shorts around the house,

lay out the flip flops for quick runs (a few through snow) to the mailbox,

and a deep seated desire to sun tan.

Here's a lovely token family photo, taken in front of the Christmas tree this year:

 

But...we can't wait until we are posting photos like this one:

 

Stay warm, safe, & healthy!

 

p.s. - for those of you asking for the annual Super Bowl photo,

please be sure to check back in over the weekend. 

 

Attitude

at·ti·tude n.

1. A position of the body or manner of carrying oneself: stood in a graceful attitude.

2. A state of mind or a feeling; disposition

 

Winter months are always long...but thankfully never dull around here.  We are now officially halfway through Rylee's mandatory "house arrest."  While it's difficult to stay in, it's what keeps her safe and as healthy as possible. 

She's had a rough few weeks with a mystery ailment that didn't increase her seizure activity but affected her respiratory system.  The hardest part of having Rylee is that she cannot tell us, in words, what's wrong.  We think it was a minor cold-which we are relieved to say didn't head into pneumonia.   Thankfully she seems to be stabilizing and breathing normally again.  We are always incredibly aware of the great medical team surrounding her, and very thankful that they took the time to properly educate us so we can give Rylee the best care possible-in her home with her family.

 

We had a very nice Christmas and New Year's.  Lots of family and friends stopping by - everyone knows the routine...leave your coat on the rack by door, take off your shoes, wash hands in warm water for at least one minute (preferably while singing a random show tune and hopping on one leg), apply GermX up to elbows...and then settle in for good food, loads of laughter and noise, and snuggles.  Aaron jokes and says if I could, I would have a HazMat OSHA approved shower at my front entrance.  (Note to self-Google "human sized autoclave" and "how hot can humans get?) 

It's not that we are "germ-a-phobes" necessarily...we just don't want to contaminate Rylee.

Doesn't that sound like a great front door sign? 

"Welcome-No Cross Contamination Allowed."

 

Our bonus room hosted our first "Girls Night In" with some of our crew-we ate entirely too much and critiqued Carrie Underwood's Maria.  10 out of 10 for singing abilities.  5 out of 10 for acting.

General consensus was men, namely those named Rolf, should never wear knickers.

Rylee loved all the attention and always enjoys the music.
 

We've had several hilarious-"I think I pulled a groin muscle"-Wii nights with friends.  Dance Revolution never fails to remind the grown ups how decrepit we really are when all the kids want to know who Journey, Backstreet Boys, and Europe are.  Definitive proof no one has "Moves like Jagger" except Mick and Adam Levine. 
Encore paybacks to all the children? 
One of the couples breaks out "Time of My Life" from Dirty Dancing!
 

Fondue nights are an ever present occasion-folks just seem to turn up with random packages of bread, cheese, or sweets.
 

We are also gearing up for the annual St.Patrick's Party with sweet friends.

 

 So-to all the crazy folks who make sure our family's mandatory house arrest
doesn't feel like "solitary confinement..." 

Thank you and we can't wait to see you.*  

                 

 *Invitation null and void if you or anyone within a five mile radius have had,

but not limited to, one of the following:

vomiting, a productive cough, diarrhea, nausea,

or any additional symptom covered on a NyQuil commercial.

 

Love you.  Mean it.

 

 

 

Gratitude

Like most women, I occasionally get caught up in all the stuff, bother, and static of life-forgetting to stop and just enjoy the spectacularly normal moments.  The attitude of complacency and complaining can sneak up on you so quietly-until suddenly you realize your Tigger self has been supplanted by a bad case of the Eeyore blues. 
For many like us who've lost a child or loved one, the holidays can be an especially bittersweet time of year.  Yet, in the midst of everything, our family daily feels an overwhelming sense of God given peace and contentment.  We have an overriding sense of thankfulness constantly rising to the surface, buoying our deep-seated belief that God continues to have more plans and blessings in store for our family.

grat·i·tude

noun \ˈgra-tə-ˌtüd, -ˌtyüd\

: a feeling of appreciation or thanks

 

 

Especially through the holiday season we are daily reminded of the many things we are grateful for.

 

I spent the weekend doing one of my favorite things-binge baking.  My kitchen is currently in such a state of disarray it looks like a chapter from Pippy Longstocking.  I love putting my heart into each sweet confection, hoping it somehow conveys to the receiver how very grateful I am for them.

Now, I get that to most people it's just peanut brittle, biscotti, cookies, cakes, and "Christmas Crack" (seriously, if you haven't looked up the recipe Google it now!)...

but to me, baking is a reminder of so many important life recipes we've experienced this year. 

 

Each ingredient-the sweet, the savory, the bitter even-is necessary to making the final product delicious. 

If you leave one ingredient out of the recipe, you can taste it-or rather you notice it, you miss it.  In life and in baking-you can always tell when someone substitutes one ingredient for another.  A Christmas treat could quickly turn into something the dog won't even eat.

I don't always like all the "ingredients" life throws our way-deeply felt heart hurts, misunderstandings, the feeling of isolation, unspeakable sorrow...

but when the few bitter ingredients are overwhelmingly tempered with the sweet ingredients-

a home filled with laughter, friendships tried and tested by fire, contentment, unconditional love...

you find the final product is baked to perfection.

 

So while I'm busy this weekend loving on the folks who love on us daily-God whispers to my heart that in all things...

in all things...

in all things...

give thanks.

 

 

Shout it from the roof tops, love "recklessly" as a family we know says.  Display your gratitude for all to see.  We are so very thankful, grateful for every thing God has given to us. Thank you for checking in on us throughout the year.  Thank you for your prayers, encouragement, and support.  Thank you for being patient with us, gentle with our hearts, and thoughtful of our feelings.

It's still very overwhelming and humbling to realize how many folks-many of whom we may never meet-check in on RyleeBug and our family. 



A life not given to mediocrity

Happy Halloween from all of us! 
This time of the year it's rare for Rylee to be out and about.  Flu season and germs are lurking around the corner and usually it's too cold.  We were so thankful for a reprieve-an unseasonably warm evening offered the chance to get out one more time as a family before winter lockdown.
Anyone who knows me well will laugh and agree when I mention I'm frugal...but at the holidays-any holiday-I really enjoy the challenge of doing everything affordably.  Anyone can go out and spend a wad of money on an impressive gift-it's the rare few who take the additional time to really think about what that person would most like, which usually ends up being something inexpensive in cost but invaluable in sentiment.

The same ideology applies to Halloween costumes in our house.  Ryann is a great sport about helping me think up creative costumes and then bears with me as I drag out my Singer sewing machine and hot glue gun, attempting to rival Martha Stewart and her minions. 

 

With Rylee I pull out my secret weapon...

the man of our house, Aaron! 

 

Aaron has the creativity and mechanical skills of McGyver.  Thankfully he's always up for a challenge since I usually need an extra brain to make Rylee's costume.  Whatever I dream up, he makes happen-pretty much in all aspects of our life. 
One can of metallic silver spray paint, a plastic drop sheet for oil changes, and fishing wire for electrical/IT cords later---presto---a huge cook pot that fits perfectly around Rylee's wheelchair.  Add the Muppets Swedish Chef and one very sweet, but sleepy, chicken...along with balloons to look like boiling water...and you have a recipe for hilarity!

Of course, nothing is complete without big sister Ryann-

who decided to be a Ballerina Bandit this year. 

 

 

 

Who strives to be "normal"...mediocre? 

In this house-we embrace the CRAAAAZZYYY, find the humor in the mundane,

and make sure we soak up and revel in these sweet memories.

Extraordinary things...

There's a great quote out there that attempts to encompass, in words, what it means to be a parent.
"Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body." - Elizabeth Stone

Our girls continue to amaze us-cause our hearts to ache with bittersweet joy, swell with unexplainable pride, love on a level we never knew we were capable of.  They cause us to catch our breath with the wonder of how God could create these extraordinary girls and give them to such ordinary people.

Tonight I'm especially thankful for Rylee's big sister Ryann.  She with an insatiable deep seated desire to know about the "whys" in life.  The rolly-polly big haired, giggly little baby who has grown into a remarkably wise and settled young lady.  Ryann a crusader for compassion, always choosing to pick the least first.  A quiet demeanor that hides a hilariously dry sense of humor. 

When the girls were younger, Ryann would often ask if she and Rylee could spend some "girl time" together.  This usually consisted of Ryann playing dress up with Rylee-often dissolving into Rylee looking like a drunken gypsy-complete with every Disney costume, make-up, and stickers to "decorate" Rylee's hair. 
Now, Ryann seeks out opportunities to share her favorite music with Rylee after a spa party.  As I clean up dinner dishes, music floats through our downstairs.  Bruno Mars, Train, Jason Mraz, Casting Crowns, Third Day, Norah Jones, Josh Groban-the gang's all here.  Ryann's Pandora channels are as diverse as the people you see at Wal-Mart on a Friday night.  Then, she shares all the latest crazes and memes with Rylee-Kid President and Soul Pancake, the Pinterest page she is working on, Flipboard, and the most recent apps for Rylee's iPad and Ryann's Kindle.

"Extraordinary things are always hiding in places people never think to look." - Jodi Picoult

In our house, we are reminded of these extraordinary things everyday when we see our girls.

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.