Seasons

Atop Cadillac Mountain, Acadia National Park-Maine 2009

My husband hates to read.  But not for the reason you may think.  He loves listening to a James Patterson book on CD while traveling with work.  Give him a GE or Roland electronic alarm manual and he will know the system backwards and forwards before installing it on a job.  The reason he dislikes books is because he can't sit still.  Literally, not sure what the ICD-9 billing code is for 'ants in your pants-itis' but he's got a bad case.  Anyone that knows his dad, will say it's in his DNA.  Aaron is always into or up to something.  He's like an Einstein energy theory...squared.  He learns best on the job, doing and learning in tandem. 

Me?  I'm old-school, no E-readers and books on smart phones for me.  One does not curl up with a hard piece of machinery...lose oneself in stacks of Kindles.  (A ripple of horror just ran through me!) A cold glass display has no allure for this girl.  There is nothing I like better than finding the oldest book in a library, rummage, or swap-meet.  I like my books to be a bit like me-rough around the edges, frayed in spots, even unreadable in spots, bendable and softened with time and touch.  Montgomery, Doyle, Austen, Poe, Bronte, Baum, Dante, Twain, du Maurier, Yeats & Kipling are friends that I can lose myself with for hours at a time, take them anywhere, revisit them again and again.  If I have free time, I like to slink off quietly by myself-watching and listening from afar.  Porch swings and lightening bugs, sand and ocean waves...kryptonite.

Our difference in personalities and learning styles has meant often our conversations devolve into 'I Love Lucy' worthy episodes.  It can also mean we run into Cool Hand Luke moments..."What we have here is a failure to communicate." 
Early in our marriage this meant moments of exasperation (his) and hurt feelings (mine).  Thirteen year later it ends up in "Who's on fiirst?" hilarity.  He means one thing, but sometimes lacks the panache to say it correctly.  I'm a woman...so I mean one thing but may say another. 
For example, when I started this blog post, I planned to talk about our summer and phasing into fall.  But, as is often the case, my mind doesn't always connect to my fingers as well as my heart.

The word 'season' to most, is defined by spring, summer, winter, fall.

But personally I like to dig a bit deeper into the definition:
To improve or enhance the flavor
To add zest or interest to
To treat until ready for use
To moderate, temper
To render competent through trial and experience

Our family is preparing to head into another season-literally, fall-but figuratively also. 
Each day we realize God is improving us-growing us up more in Him. 
He's molding and treating us until He's ready to use us to accomplish great things. 
Tempering us with the Refiner's fire.
We are becoming more competent in Him through our life experiences, unafraid to see where He leads.

Isn't life experience's greatest teacher?

Season changes are an exciting part of God's plan for our life.

Jeremiah 29:11 

"Me soon come..."

http://www.youtube.com/watch?v=oPWgSISdYRc

Sharing a brief video from my March Jamaica trip with the Nehemiah Project.
Had the opportunity to meet this little guy at CCCD Jamaica. He is five years old, but had yet to learn sign language. But really-who needs language of any type when you have expressions like him?! What a pleasure to share something so simple-and to see the joy he recieves from it.
Was also blessed to visit six public schools, another deaf school, and an orphange during my visit. Shared Rylee's life verse from Psalm, explaining how God made each of us unique-and that our differences are actually what make each of us so special. Took down some snow from WV-which the kids and teachers all loved-to illustrate how, like us, each snowflake is different, unique, and beautiful.
Had the opportunity to meet two amazing moms caring for beautiful little girls, like our Rylee. God allowed us to assist with linking them up with a local rotary club who gave each girl their first wheelchairs-and their first opportunity to be mobile, up and about. Planning to go back down this month to surprise them both with all-terrain strollers so that the girls can enjoy community activities and attend their doctors visits despite washed out roads, and crazy Jamaican taxi drivers!
So excited and thankful that God has allowed me to share a small part of these little girls' lives.
While we know firsthand one can never outgive the Lord...man, it's sure fun trying!
God is good...all the time!

Special thanks to Jerry & Carol with the Nehemiah Project for making my first overseas trip so easy and enjoyable (minus the straw market!), Pastor Cletus and Tammy-missionaries in Jamaica for picking up SweetPea and letting me meet her and her sweet momma, Michelle and the local rotary club for all their hard work and dedication, and each person here at home who prayed for and supported my trip in numerous ways. "much love"

Recalculating

Life for us over the past year has been a total adjustment, a 'recalculation.'
We realized somewhere in the last twelve months, our role in life has shifted to passenger.
While some would not like the change of pace, or lack of control-we've begun to relish having a front row seat, safely buckled in, anxious and excited to see what's next on the road ahead. Aaron and I have always found it comical the way we pack for trips. We think of everything...Feeding and DME supplies for Rylee? Safe and sound in stow-and go.
Activities and snacks for Ryann? In the bookbag beside her seat.
Multiple seasonal clothing? Of course, after all you never know when you may need gloves, hat, and winter coat while visiting Florida.
Traditional travel CD (really we have a playlist, doesn't everyone?) we never leave home without? In the CD player and uploaded to my iPhone.
Sunscreen and first aid kit? Filled full last night, under the front seat.
For the record, mine is categorized by problem-Bites and Stings, Allergies/Pain Medications, Minor Scrapes and Cuts, Major Bleeding, Ice pack, Anti-septic, and of course every bandage size known to man. My Troop 1041 Girl Scout leader would be so proud!
The girls' favorite blankets and stuffed animal? Just out of the wash, smelling of home, check.
One fancy outfit per person for the fancy restaurant we never seem to get around to patronizing? In the garmet bag "hang it up please honey...no it cannot go in stow-in-go. Did you just put that under the wheelchair?"
The list goes on and on until the girls are buckled in, by now asleep-and Aaron and I are sweaty messes, grinning with relief as we lean together on the back van door to close it. We quickly high five, hop in-drive to the end of the driveway-at which time one of us remembers we didn't tie down the suitcase carrier on top of the car. My husband jokes that he has to go back to work to get a break from vacation! How often we feel that way.
Now...my girls on the other hand-are blissfully out of control passengers.
All their needs are met, they have leg room to stretch out and lean back, generally everything they need for the trip is within arms length.

As a christian it's so easy to see the life parallel.
When we allow God to become the driver-He charts our route, makes sure we are on time and don't get lost.
I Peter 5:7
Deuteronomy 31:6
Matthew 10:30-32
He controls the temperature and speed of our life trip.
He guides our pit-stops-time to rest up in Him and be fed by His promises.
Isaiah 40:31
Psalm 46:10
His direction like a life-song that plays to the tune and speed of the life He has planned out, carefully crafted and thoughtfully carved.
Psalm 28:7

We still have input, but everyone knows the worth of a backseat driver. Our family is constantly discovering that when we go along for the ride-He meets all our needs. He gives us room to stretch and grow up in Him...and somehow, just when we need it everything we need for our trip is within arms lenth.
2 Corinthians 12:9

Thankful for our satellite, who guides us with His GPS (God Purposed Scenery)...buckled in for the ride, excited to see where He will lead us.
Psalm 139:13-16

Blissfully out of control passengers

"We're back.....!"

Wow...after a very long hiatus and a whole lot of changes, we're back to blogging!

In the midst of building our home last year my email (the one I've had since high school, with no security issues, mind you) was hacked. At the same time, Rylee's Google Blog was also compromised.

Our family blog has been a great way to let our close friends and family know what was going on in our lives-how to pray and how to encourage us. What we did not anticipate was all the 'six degree of Rylee' folks who began checking in on us too! We've loved reaching out to meet these new 'groupies', often ministering to other families like our own.
While I hate to restrict this avenue of communication...I also feel the need to protect our family and ensure a stranger or a hacker in a foreign country can't exploit our girls.

With that said-Google Blogs allow me to invite 100 folks to read our blog. If you've made it this far-you are one of those we granted access to!
Sorry about the extra step to check in on RyleeBug-but glad everyone understands.

Hope you check in often. I'll be updating weekly again...promise!
Much love from our crazy crew!

Here comes the sun...

Each year as green leaves begin to dry and fall, we steel ourselves-praying that RyleeBug makes it through another winter-cold and flu season, pneumonia scare. As we pull out winter scarves and hats, making piles to hang in already stuffed closets-we fold up church sundresses and flip flops packing them tightly away into storage totes, sitting on the lids as we lock them securely into place.
Our day to day life parallels so closely to our spiritual walk with Him.
In two months Rylee will be celebrating her sixth birthday. Our first few weeks of her life-even the first three years-we hunkered down, chin tucked, body braced against the constant storms in our life. Emotions and thoughts were guardedly caught between life's layers. As her health stabilized and we settled into living with our hearts in our throat and somehow making it normal-it felt a bit like sitting on a full tote, hoping the weight in our hearts wouldn't burst out-our neat pile of pent up emotions bursting out where everyone could see our pain and hurt and fears.
As God continues to hold us, showering us daily with His love and grace-we feel a bit like spring- showing our faces (literally and figuratively) as trees and plants bloom and the dingy grey of winter turns to the bright green of spring. How very thankful that God continues to teach us and lead us through all the seasons of day to day life...and our spiritual life with Him.


Rylee has had a wonderful winter-no pneumonia and no hospitalizations. She continues to make huge progress visually. It still seems a bit weird when she tracks us around the room, not moving her head if she can see us. Reminds you of being a kid in a museum...no matter where you stand, those oil paintings of strangers are always staring at you! We had a huge upheaval in her daily care when we had to switch therapists. We miss and are so appreciative of her entire team of therapists over the last five years-but it's also exciting to bring in new people with new ideas and care plans. A special blessing for me as a mom-God has consistently given us Godly women to teach and guide me as I care for Rylee. RyleeBug has responded surprisingly well and is making marked progress in her visual tracking, swallowing/mouth reflexes, and free will movement.
A few weeks ago we had our first scare of the entire winter. Aaron and I took Ryann out of town on an overnighter to support our friends the Vannatters (see link to right for Emma). When we got home I noticed that Rylee had a huge gap in her smile! She had lost and swallowed (gasp!) her TWO bottom front teeth. It's still a shock-she looks like a mixed up vampire-but what a joy that she met another milestone as a little girl! Needless to say, the ToothFairy got an IOU, and after an xray to confirm all was indeed well, we are breathing a bit easier.

Ryann is anxious to finish out the school year and continues to make us laugh with her antics. We let her try out for a local christian soccer league, and she thankfully has her daddy's athletic abilities. Dick's had a sale on cleats so we grabbed a pair and brought them home for her to try out. Within a few minutes Aaron had her out in the drive, running practice drills. He turned his back for a moment to brag on his girl to the neighbor-but was a bit dismayed when the neighbor began to snicker and look over Aaron's shoulder. Ryann was in full uniform-cleats and shin guards...performing all five ballet feet positions and then proceeded to top if off with a dashingly graceful recital...all while 'en pointe' on the tips of her cleats!

Our house is coming along-(see picture on right!)-and I believe I will probably cry like an idiot when we walk (and roll) into the front door of our completed home. Our church family has been such a support-helping us prepare our old home for sale-and now as we build our new home fully accessible for Rylee. What a joy to know that so many people love us and want to see us succeed!
The 3rd Annual Rylee's Rally is next Saturday. We plan to cover all age groups this year-so anyone caring for an individual with special health care needs will be able to access the information and services their loved one needs and deserves. Please pray God will again bless the day-the weather-the volunteers-the vendors-and especially the visiting families. Our hope and prayer is that folks go home with a renewed hope and feeling that people not only care about them-but are ready, willing, and able to help.

Thanks so much for your continued prayers, support, and encouragement-we can't wait to be out and about again showing off our girls!

Aaron, Deb, Ryann, and RyleeBug