#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.