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.