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)

Yikes!

Everyone is well-sorry for the delay...long story, but I should have the site updated (yes, with pictures!) by the weekend. Apologize for leaving everyone on edge, explanations to follow!