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.