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The feeling of a gentle breeze ruffling her hair and the sound of our neighbor's wind chimes have been replaced by her favorite music and DVD which we hope drowns out the sound of the machine beeps and whirls.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