"For you formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them." - Psalm 139:13-16
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10.25.2008

Safe with us...

"But I will hope continually, and will yet praise thee more and more..."
Psalm 71:14
"I will bless the LORD at all times;
his praise shall continually be in my mouth."
Psalm 34:1
"When I called, you answered me.
You made me bold and stouthearted."
Psalm 138:3



Our goal the last four years has not been to prolong Rylee's life...but to make sure she is loved, accepted, comfortable. This is so easy for us-as natural as taking a breath. The difficult part of having Rylee is that we have to depend on others to help us give her the best care possible. More difficult still is feeling as though the people who are supposed to help us-are the ones we have to fight the most. People who don't know us, haven't touched Rylee, sometimes aren't even medically trained-make decisions that essentially determine how we live our life with her. Friday we had a disheartening setback regarding her programs and care. Please pray that we can once again be strong enough-physically, emotionally, and spiritually-to fight for the services she needs and deserves. It's hard not to wonder, "What if they had a child like ours?"
As long as she breathes, we will continue to give her the very best possible. And while she is here, in our arms, she is safe.
Please pray God will once again cover us with His grace and mercy-and that Rylee can mantain her health while the state decides if she needs medical care.


10.14.2008

Anniversary Weekend



Aaron and I spent our ninth anniversary out of town. We headed to New River Gorge for a long weekend. While it was tough to leave the girls (thanks MaMaw Vivian!), we had a wonderful time. Our cabin was perfect-secluded and quiet, and we really enjoyed all the hiking trails down in the gorge. The above photos show the old mining town of Kaymoor. It's strange to just come across an old mining town-odd to stop and imagine the people who lived and worked in this town.
We walked about six miles in (forgot our water) and realized we had to go down 800 steps to actually reach the abandoned town.
Yeah...this only shows about 150 steps. How do I know this, you ask? Because I huffed, puffed, and wheezed my way up all of 'em. I felt like playing the Rocky music when we finally reached the top! Aaron and I realized about halfway down that we weren't kids anymore! giggle



Just a few of the old coke ovens.


The actual coal belt from Kaymoor mines. Aaron hopped over the stairs, a large amount of coal chunks, and loads of poison ivy to get this picture...just beside the 'Danger' sign...to climb up on the belt. He's such a rebel!

Looking up from under the belt.


Another trail had us hike up from the bottom of the gorge to Long Point.
The view of the bridge made the hike well worth it.
The weather was perfect and we had a wonderful time!






We drove up Rt. 60 for the ride home, hitting all the old towns and getting cool pictures alone the way. Aaron and I had a great time being kids again.
West Virginia...wild and wonderful!

10.08.2008

How are you?

Often when I sit down to type a new entry the words take over. It's difficult for my fingers to keep up with my thought process. Then there are those times when I sit for ages-collecting my thoughts, editing and filtering the emotions I want to convey-second guessing how you, the reader, will process the jumble in my head and heart. I watch the cursor blink, almost as though it is anticipating and encouraging me.

This week I had another opportunity to meet a parent of a special needs child. We talked for awhile, swapping stories, banding about medical jargon that most first year residents have yet to learn. Realizing we couldn't talk forever, we exchanged numbers and emails, promising to keep in touch. Her parting line? "You just seem to have it so together."

Everyday we go about our hectic lives. We ask people, "How are you?"
But, we never seem to make eye contact. We miss the unspoken words. No one really wants to know that you are in the midst of a nasty divorce. Worried about losing your job. Anxiously awaiting test results that could change your life forever. Living, waiting for the proverbial shoe to drop. We care when it's convenient.

Because of that, you hear people give answers that glide effortlessly off the tongue. No thought involved-"Oh, God's getting me through it. Piece of cake. Mind over matter-if I don't mind, it doesn't matter." Everyone has a saying they use, fully knowing that when someone asks, "How are you?" they really mean, "How can I be polite without getting too involved?"
While we are fortunate to have this website, it's so easy for us to fall into that groove. Duck and weave. Play the game, get out and don't get hurt. Just say what people want to hear, meet their expectations. To the outside world, we have it all together-but we know the truth.

God has it all together.

We aren't accepting of the fact that 'God will never give us more than we can bear,' (Is that actually in scripture?). In fact, we know that He wants to break us, make us dependent on Him. His grace is sufficient to care for all our needs while He teaches us to be strong in Him.
(2 Corinthians 12:9)

Anyone that knows me at all, knows that I am controlled chaos at best. I'm like the Tasmanian Devil. Aaron's the calm, before my storm.
I was reminded again this week to let go of pride. Allow people to see me. Not some fabricated person derived of other's expectations. I'm so weak. I struggle daily to balance being a wife, friend, daughter, sister, mother. Guilt gets the better of me as I raise my girls. I wonder if I left the oven on and have to drive back home to check, when I'm already fifteen minutes late. I get tired of wearing the same three dresses to church. I fight with my husband, realizing midway into an argument that not only am I wrong, but I'm now going to have to apologize...who likes to do that? I worry how many more winters/illnesses Rylee will make it through. I push the toothpaste from the middle of the tube. I allow Ryann to use the 'ten second rule' forgetting that we now have a dog. I get angry at the agencies and vendors I have to deal with-wondering if things will ever get easier. When company unexpectedly arrives, I shove dirty dishes into the oven with the speed and agility of a cheetah. I have taken store bought macaroni salad, put it in a pretty dish, sprinkled it with paprika and passed it off as my own...at a church dinner! (grin-thanks for that trick-Mom!)

It's not that I have it all together. It's that I've learned to hide it better.
Which I've suddenly realized isn't an accomplishment to be proud of.

We want you to see a family that is learning, and growing. Learning daily to love unconditionally, no holding back, no regrets. A family that makes mistakes and tries to learn from them. A family centered on reflecting His glory and grace.

The next time you ask someone, "How are you?"
Look them in the eyes and listen with your heart and ears.
They may just be waiting for someone to see them...really see them...and care.


Foolish heart looks like we're here again
Same old game of plastic smile
Don't let anybody in
Hiding my heartache,
will this glass house break
How much will they take before I'm empty?
Do I let it show, does anybody know?
But God sees the real me
Hiding in my skin, broken from within
Unveil me completely I'm loosening my grasp
There's no need to mask my frailty
Cause He sees the real me
Painted on, life is behind a mask
Self-inflicted circus clown
I'm tired of the song and dance
Living a charade, always on parade
What a mess I've made of my existence
But you love me even now
And still I see somehow
But He sees the real me
Hiding in my skin, broken from within
Unveil me completely I'm loosening my grasp
There's no need to mask my frailty
Cause He sees the real me
Wonderful, beautiful is what you see
When you look at me
You're turning the tattered fabric of my life into
A perfect tapestry
I am so glad that I'm yours
Cause you see the real me
Hiding in my skin, broken from within
Unveil me completely I'm loosening my grasp
There's no need to mask my frailty
Cause you see the real me
And you love me just as I am
Wonderful, Beautiful is what He sees
When He looks at me

song, 'The Real Me' - Natalie Grant

10.05.2008

Emma's Passing

Princess Emma recently, during treatment at Duke.


I'm struggling to type, heart heavy, tears in my eyes as I try to begin to articulate my feelings. Through the girls we've met so many amazing people. Chance encounters-in WalMart check out lines, at churches, hospital bedsides. For those few, precious moments your hearts touch-knowing a deep empathy for another's pain and concerns. God allows you to glimpse their deepest desires and hear their unspoken fears.
Through Rylee and later Kaymaen, we've learned the true meaning of 'bearing another's burdens.' Tonight our hearts are heavy for a family we met in passing, have emailed with, spoke with over the phone-but through our girls' illnesses God allowed our hearts to touch for those sacred moments.
Your child doesn't have to have the same life threatening illness to feel an unspoken bond. Any parent who has held their breath while waiting for their child to take their next feels it. Sitting by the hospital bed praying for a miracle, daring to hope, afraid to imagine the future- these parents understand it.
Her parents know she is safe in His arms, yet in the midst of this knowledge their own arms ache for their precious little girl.

Please pray for this sweet family-Charles, Karen, and big brother Logan.

If you have time, please visit their CaringBridge site and leave a note on their guest page. When words don't come easily, it's enough to say you are praying for them in the upcoming hours, days, and months.





"For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee, for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book they were all written, the days that were ordained for me, when as yet there was not one of them."

Psalm 139:13-16