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

Remembering...

Having Rylee has brought so many blessings to our family-not the least of which are the families we've met. Sometimes the families have children with the same disorder as RyleeBug or also have special needs children. Often we've met these families over the bedside of their child-forging friendships, conversations set to the tune of heart and oxygen monitors. From time to time God allows us to cross paths in the most mundane of settings-work or WalMart-grinning over buggies and wheelchairs as we discuss ways to stretch a dollar. Rylee's Rally allows us to personally meet and love on the families we've only met over the phone or prayed for through a church's prayer line, heard of through a 'friend of a friend.'

For some reason God has blessed us, allowed our hearts to touch-in those quiet still moments we gain a small glimpse of His purpose for us. While we can never fully trace His hand drawn masterpiece for our family, we can always trust His heart.

'The Lord himself has gone ahead-He will be with you, He will never leave you or forsake you. Don't be afraid and don't be discouraged.' Deuteronomy 31:8 (paraphrase)

"For I know the plans I have for you,'declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" Jeremiah 29:11 NIV


Please remember in prayer this month and next those of us who have lost a child. Look us in the eye, put your arm around us...word aren't always necessary. We can never say enough what it means to us when someone remembers, talks about our sweet baby girl. Our special needs family has lost several children in the past few months-our dear friends the Fitzpatricks and Vannatters are remembering their daughters, the first year mark of Fiona and Emma's passing. Other families like our own-the Cribbs, Laneros, and Carters-are marking in our own way birthdays, imagining what their little one would look like three years old, four years old, seven years old; remembering smells and touches as a mommy, carried in their hearts forever just as they carried that precious, much longed for, perfectly made masterpiece under their heart for nine months.

Pray that God will continue to fill our hearts with a peace that passes all understanding. That our families can live the very best life possible-living with joy, laughing loudly, soaking in and enjoying every precious moment...and in doing so, by living each day to the fullest-we honor and celebrate our children's lives, and the One who gave them to us.

All decked out...now, where do we go in the middle of winter?!

First things first-let me apologize sincerely for the long delay in updating Bug's groupie page. Since her birthday entry we put our house on the market, sold our house, moved into a rented townhouse, went on a goose chase for the next house, and have finally settled into the idea of building. Aaron has worked some crazy hours, Ryann got glasses and H1N1(not in that order), we celebrated our ten year anniversary in Maine, and Rylee had her first big holiday out and about with family.

And she has begun to smile.

sigh

Life is good.

Hope everyone likes the new picture-her Daddy picked out the music...gotta admit it does seem to fit! Thanks to everyone for all the support, prayers, encouragement-and for helping to move those boxes. (We will need you guys again this summer! And yes, I will feed you.)

In the midst of house building we are also gearing up for the third annual Rylee's Rally. Be sure to let us know if you'd like to volunteer this year.

Now that our Internet is up and running again I'll be posting regularly again. (promise!)

Thanks to all the groupies for continuing to check in-still amazes us to think that after five years, folks still want to hear what we have to say. Still very humbling-we never take it for granted.

To all our family across the pond-the Laneros, Johnsons, Lemos, and others...you guys must get Skype! We miss ya'll.

To our friends and family here and a few states over...can't wait 'til Spring is here and we can see you all again. Fitz, Carter, McLaughlin, Pickem, Williams, Durin, and Vannatter families-"partay" at our house once we are moved in...ever wanted to vacation in 'Wild & Wonderful' West Virginia?!

To our faithful few who check in AND leave comments-keep 'em coming what an encouragement! To you who 'stalk' the site (*ahem* we know who you are! grin) we love you and miss you too!

"Oh give thanks unto the Lord, for He is good;

for His mercy endureth forever."

Psalm 107:1

Yes I realize a verse sounds and looks better with a

Casting Crown/Third Day/Leeland--KLovey type song.

I'll repent on the next post! :0)