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
