No deep discussions today.

Just a quick note to say I love my sweet husband.

(please refer to blog entry: 02/26/08 'Fact is better than Fiction)

Aaron spent last Friday making sure his tags were correct, only to discover later they gave him the wrong tag. A few phone calls from the DMV later, and trying to explain his work schedule, our life with Rylee, too many hours missed from work, and $50 bucks in gas - they corrected their mistake. Even though it was at our expense - it just reminded me how thankful I am for Aaron's calm disposition.

He's the calm...I of course am the storm.

(no comments please, from the peanut gallery! grin)

'A soft answer turneth away wrath:

but grievous words stir up anger.'

Proverbs 15:1

Trying out a new map-let me know what everyone thinks. Aaron and I love seeing who's checking in, and it's a great way to teach Ryann geography. Shout out to Ankara, Turkey and Ile-de-France. Also-to our local yokels who are faithful groupies. To the folks in Cranberry Township, PA and everyone else that pray for us, but we've never met personally - God bless, thank you for being faithful prayer warriors on our behalf...and drop us a line on the guestpage - we'd like to know how you heard about Rylee! Thanks!

Taking things in stride...the Davis Crew

This week the Lord has really burdened my heart as a mother. I struggle daily as I try to grasp God's sovereignty in the midst of my everyday life. How do I convey what we've learned to those around us? How do I teach my five year old to have joy even in the midst of great heartache? Can I...am I, reflecting His glory as we love and care for Rylee?

There are so many people struggling, painfully making their way through life.
What worth does faith have in a materialistic world?

"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

We get so focused on what we can't prove scientifically or physically grasp.
In that single mindedness we forget that the important, valuable things in life are just that-intangibles...'incapable of being perceived by the sense of touch, not definite or clear to the mind.'

Love, hope, faith, trust, peace, thankfulness, contentment,...

Sometimes, in the midst of the hurt, the pain-when your soul cries out for His mercy and grace...when your head knowledge of His Word can't seem to find its way into your breaking heart...in the stillness of prayer you can almost feel it...
He's there, wrapping His arms around you, lifting your burden.

And you remember, this is what it feels to be held.

Many times, I will add a post - trying to be honest with my emotions. The turmoil of my private thoughts and prayers can be difficult to see written down. When I posted this entry last week it was with a heavy heart for a dear friend. Many of you know of our special friendship with the Carters. They are going through a very difficult time right now...grieving the loss of a child already named, wanted so desperately. Please remember this sweet family in your thoughts and prayers. Words cannot begin to articulate our hurt for them. Pray they will feel God's mercy and grace...and a peace that passes all understanding.

We plead guilty...to temporary insanity!

Now, most parents will admit to becoming immune, at some point, to their child's 'look.' You know the one...mouth puckered, big eyes, head tilted...it is as though a magical spell momentarily robs you of your sanity. Then when they say, "But, I promise, I'll take care of it!" you for some reason believe them. On reflection you wonder what robbed you of your intelligence. Especially when you consider that they can't read or tie their shoes...but in that moment, you think to yourself, "Maybe she really could take care of a pet."
Now, all you readers know about the demise of Doe, Ray, and Me-Ryann's goldfish from WalMart. Deciding we needed something with more staying power, we went through the list. Tadpoles turn into frogs and you have all that water to keep clean. Hermit crabs...yeah, not really movers and shakers. Turtles and rabbits, well they kind of stink. A cat claws things and of course could climb onto counters or up on Rylee as she sleeps. Mice...don't think so.
So...what of course does that leave? Yes...a dog.

Now I will be the first to admit I'm not a pet person...let alone an indoor pet person. Keep in mind that I already have one butt (albeit a cute one) to wipe-why would I knowingly submit myself to house training a dog you ask? Take one look at the picture below and I think you will understand. Temporary insanity.


Ryann and Rylee decided to name the little pooch, 'Princess Sophia Fluffy Hallelujah Davis.' Aaron's first comment, "Seriously, couldn't you have at least gotten a boy dog? I'm surrounded by women!" His second comment involves a mental picture that I relish telling. Imagine my manly husband, teaching this tiny little dog how to pee outside. Then imagine him calling her inside..."Princess Sophie, Princess Sophie, come here doggy!" I laughed until my sides hurt. Aaron's a good sport, but needless to say everyone has nicknamed the pooch 'Sofers.'

Sophie is very sweet with the girls. In the few days we've had her we've noticed she is very interested in Rylee's wheelchair. We let her lay with Rylee in the evenings, under our close supervision. She snuggles up in the crook of Rylee's arm (the dog is hypoallergenic and will only grow to five pounds) and settles in for naps. When Rylee has a seizure she will lay very still and lick Rylee's hand until it's over. Rylee likes the feel of her up against her and generally the two fall asleep together. Ryann has been taking care of all her needs. It's amusing watching them play and run together. Ryann runs around the corner, Sophie fast on her heels...until Sophie trips on her head and spins out. Wanting her to fully experience her first real pet we are also making her clean up after Sophie. Let me tell you, the first number two Sophie made in the house was a real treat! Aaron and I made Ryann clean up...you would have thought she was Chicken Little and the sky was falling! After tears, pleading, and bargaining she finally cleaned up-and since then has been taking total care of Sophie.


Hope you all enjoy the pictures. Aaron and I were sold when we saw how sweet she is with our girls and I like the late night company. She's good therapy for all of us.
(But I really hope to have her house trained...soon!)

Locks of Love gets two more twelve inch braids! This is Ryann's second time to give.

Ryann, Pastor Troy, and some of her new friends at Camp Joy.

Ryann after the 'slop'stical course - that is powder in her hair,

chocolate syrup on her mouth, and doughnut dust on her face.

Ryann and I just finished our church's young kids camp-Camp Joy. Last weekend she cut her hair just in time-another twelve inches for Locks of Love. We were told she's the only kid they've ever had to give twelve inches...twice...in just over a year. While the new haircut makes her look much older-Aaron and I are so proud of her compassionate heart and willing spirit. Speaking of hair, and turning back to Camp Joy, since I'm not quite ready to send Ryann as an overnighter, she was a daycamper this year. Not wanting to leave her, but also not wanting to be in the way, I told everyone I was available to do the stuff no one else wanted to do. Last year that involved mucking out bathroom stalls with some of the other moms...and screaming as wood roaches clamored out of the drains. This year I had a new posse and a new job...once again involving pests. I can now add another job description to my mommy resume-lice checker. Ah, life is so glamorous! giggle Ryann made some new best friends, or as she calls them in her 'teenager voice'-BFF's.

Ryann, Miss Ashley, and Sierra

Ryann's first ever award!

She also learned to run obstacle courses, climb up a tarp covered in syrup and baby oil, run with inner tubes around her, and discovered that being dirty is actually pretty fun. She's always been very particular about her hygiene routine...after two hot sticky days at camp she fell asleep in bed, fully clothed with about an inch of dirt and grime on her feet, stuck between her toes. We had a great week and enjoyed the time together. Rylee decided to stay home with her professional spoilers and beat the heat. Camp Joy also taught me the importance of letting my little girl fly. It's pretty much common knowledge among those who know me well...I'm a helicopter...I hover. It's not that I worry as much as I just want to experience everything with her as she learns and grows. Please pray that I can find a good balance-encouraging her and letting her take her own leaps and bounds. Pray that God will continue to put wonderful people in our lives that I can trust to help her achieve any goals she may have now and in the future.


Aaron and I enjoyed some much needed 'husband-wife' time this weekend. We went to Blennerhasset Island-checked out the historical landmarks, rode bikes, had a little picnic, took the scenic tour on the ferry boat. It was wonderful to spend time with Aaron. We love our girls so very much, but every once and a while - we need a little break from the day in and day out of work, work, and more work (for him) and diapers, dishes, and no sleep (for me). I think we realized how much we need this time to ourselves-to refresh and reconnect-and will try to start doing 'date days' more often...as in often I of course mean, more than once a year.

The captain loaned me his hat...and the wheel!

Rylee continues to be stable-good clear breathing, growing in leaps and bounds, and becoming more and more alert. While we know she will never walk or talk-her medical improvements are comparative to taking first steps. Every time she coughs and clears her own secretions or moves her head to locate a familiar voice it improves her quality of life. We continue to be amazed at her progress and thankful for time to make wonderful memories with her. Summer is a great time for us-park visits, swimming, church, going out to eat with friends, backyard play dates. Except for the heat, she does great outside and we generally don't have to be as concerned about germs. We go into house arrest around the fall through early summer to protect her immune system-so we cram alot into our few summer months. Please continue to pray for her overall health and comfort level-and wisdom as Aaron and I, and her medical staff make decisions.

Rylee getting a workout from her physical therapists.

That's all for now...hope everyone enjoys the photos. Know that we are all living life to the fullest and encourage each of you to live life...'more abundantly...'
We've learned through Rylee and Kaymaen that the length of your life isn't as important as the depth of the life.
Live full, love hard, and laugh loud!

"...dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you. And over all these virtues put on love, which binds them all together in perfect unity. Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Let the word of Christ dwell in you richly as you teach and admonish one another with all wisdom, and as you sing psalms, hymns and spiritual songs with gratitude in your hearts to God. And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him." Colossians 3:12-17

The tragedy of life is not that it ends so soon,

but that we wait so long to begin it.

-Winston Churchill

Friends...

Bestest Friends

The princesses holding court. Sir Dylan came along with his grandmother, Lady Klara, to pay homage to the royal beauties. (Klara delivered all three of my girls)
The Davis and Carter families. Is it just me or do Rich and Aaron look sorta similar?
The girls spa party night. Olivia's Gammie sent all three girls matching pajamas.

The best buddies sharing secrets and downtime.

Thanks to Trish for their cool shirts and Mary for their princess dolls.

Since I last posted Rylee has turned four. The tiny, still infant that lay in pediatric intensive care-tubes and beeps everywhere-has, like her big sister before her, taught Aaron and I so much...grown us up more in the Lord, enlarged our hearts and minds. Our little girl is a toddler! Long, curly blond hair. Incredibly long lashes rimming big bright blue eyes so like her daddy's. Almost as tall as Ryann...and yes, it is official-she definitely makes chunky thighs look good! grin

We took Rylee off the ventilator after we were given the severity of her diagnosis-praying for a few days with her-to make memories, enough to last us all a lifetime. But God once again exceeded our expectations. We've had four years to laugh loud, live strong, love deeply. We have photos of vacations, a meeting with a Prince, rode rides at Disney. Snuggled together at bedtimes, caught Ryann 'decorating' her sister with stickers and markers, cried as she began to turn her head towards our voices. Meet strangers who astonish us with their desire to help our family, pray for us, love us all-strangers who have now become family to us. God has given Ryann the ability to grow up learning firsthand compassion and acceptance. Our family and friends have supported and encouraged us - not always knowing what to say - but popping up at all times with willing hearts, giving spirits, and a home cooked meal. God put wonderful medical staff in our lives - educating us and helping us give Rylee the best life possible. Rylee has taught us to take nothing for granted, brought us to our knees with wonder (and prayer), and continues to remind us of God's unconditional love for His children. We don't fear her disorder, the medical issues that come with her.

"There is no fear in love; but perfect love casteth out fear ... "~1 John 4:18~

Through Rylee we've meet other families in similar situations. The Carters brought home their daughter, Olivia, much the same way we did. Hoping and praying...daring to ask for a miracle, hoping for time with their sweet little girl. In four years Olivia's mom, Angie, and I have become confidantes, late night phone callers, email and instant messaging addicts, sounding boards and prayer warriors for each other, offering wide open mommy hearts...hoping to find a friend who truly understands...but somehow along the way became sisters of the heart...kindred spirits.
The Carters live in Maine and of course we'd never met. Part of their Make A Wish trip with Olivia was to celebrate the girls' fourth birthday together.
After four years we finally could hug each other-giggle and cry together. We put Rylee and Olivia's hand in each others. Laughed as they filled up Rylee's twin bed. Rylee turned to face Olivia and coughed all over her. Livie, deciding that real friends share everything...promptly sneezed right in Rylee's face. It's probably the only time Angie and I've ever giggled about someone else 'sharing' germs with our kids! Aaron and Rich spent time golfing while Angie and I gabbed all weekend. We had a wonderful party with good friends and family-lots of bubbles, a few happy tears, and plenty of spoiling for the girls. After all-they get no attention (grin). Ryann enjoyed having another sissy to love on-she was very protective of Livie and would go back and forth between the girls, making sure everything was just right. We had a few days to really get to know each other-in person-and to revel in having another family like us-who really understood everything. Seizures, medications, and therapies were bandied about over the dinner table as though we were discussing the latest football game or recent local news. It was fun to hold each other's child-without saying, "Um, her arm is dangling. Um, she's loosing circulation in her legs. Um, she can't breathe well when you hold her that. Aaaa, do you think you could lean her back a bit more?" questions that degenerate into the inevitable, "She's heavy isn't she? Let me take her off your hands." Rich knew just how to hold Rylee, and Aaron was the same with Olivia. And of course Angie and I couldn't keep our hands off the girls! They are so alike-even their hands smell the same! We of course know that-because we are actually like that dirty feet smell locked in their little fists. And yes, our husbands have informed us that we are weirdos! giggle
It was great to speak our minds knowing they got 'it,' fully understood our hearts and thoughts. We had such a wonderful time with this sweet family. I pray I can be available, encouraging to another mother-the way Angie has been to me. Our only regret? That the trip wasn't longer...and that they lived closer!

Hope everyone enjoys the photos-
please remember the Carter family as you pray for our own.

"A friend is a person with whom I may be sincere.

Before him, I may think aloud."

Ralph Waldo Emerson