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

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.

www.caringbridge.org/visit/emmavannatter

New Post...coming soon!

We've had alot going on since the last post, bit of a roller coaster ride. You know-" I laughed, I cried...I ran the whole gambit of emotions." Yeah.
Thankfully Rylee is well in the midst of this maelstrom.

Once I can stop, breathe, and collect my thoughts I will update-hopefully with new photos.

Please pray for me as I deal with the people and agencies in place to help us give Rylee the best possible. Many times it's as though the people who are supposed to help, are the ones we have to fight the most.

His peace

Peace

freedom of the mind from annoyance, distraction, anxiety, an obsession, etc.; tranquillity; serenity

a state of tranquillity or serenity

silence; stillness

cessation of or freedom from any strife or dissension

Rylee and I were outside, laying on the swing. The breeze was just right, ruffling her blond curls. She would turn her head occasionally, her eyes searching and listening.

I caught this photo as she was looking at me. There are these occasional glances-glimpses of her-that God gives us from time to time. Moments where you feel she really sees you, knows you, recognizes you. My heart skips a beat, unconsciously holding a breath and I fully realize this deep connection with my daughter.

Realistically there are many things Rylee can't do. But you know what I miss the most? Her ability to display open affection, a connection to her family. Her dimpled arms wrapped around my neck as I carry her off to slumber land. A sweet, wet little kiss pressed on my cheek. Her giggle. Rylee's never been able to do these things.

Yet along the way, we've learned ways to discover her personality-likes and dislikes, falling more deeply in love with this precious little girl. Before the girls were the same size, Ryann used to 'decorate' her sister in all her Disney princess paraphernalia. Rylee, looking a bit like a drunken gypsy, would take it all in-Ryann chatting like a little magpie and telling her sissy, "Stay right there, I'll be right back." Aaron and I love family night-watching movies with the girls-each of us lap full, hearts overflowing as we snuggle with a daughter. We have photos of Rylee in every imaginable position on family vacations. Cuddled on the couch with her baby sister Kaymaen. Ryann loves to tell the story of how Prince Phillip woke up our 'Sleeping Beauty.' Aaron and I look forward to Saturday mornings when we put the girls in bed with us and plan the day.

In the past four years of raising the girls-Aaron and I have learned to slow down a bit, take things in, appreciate more, savor moments. Rylee has taught us to 'free our minds of annoyance, distraction, anxiety.' Slowly, we've found in the midst of our heartache, a heartbeat. A heartbeat powered by a peace that does pass all known understanding. Intangible, unexplainable-yet pumping through our every day.

Maybe God gives me these moments of connection...not to let her see me...but to allow me to really see her...and be thankful...at peace.

Maybe that's a little secret God has let us in on.

Ryann recounted a bible story about Jesus and the storm. Everyone was so troubled and afraid of a great storm that had arisen, while Jesus slept in the boat. After being awakened, and probably a bit dismayed at his fellow travelers' lack of faith-He calmed the sea. While scripture quotes His words-"Peace, be still"-Ryann's four year old translation was also fitting-"Please get real."

We know that our peace comes from one place-our Heavenly Father. For us, our peace was achieved, and is daily rediscovered, by giving ourselves fully to His will. Trusting His understanding and plan for our life.

Rylee is at peace, fully content in our love, her mind on heavenly things.

"Thou wilt keep him in perfect peace, whose mind is stayed on thee:

because he trusteth in thee."

Isiah 26:3 (KJV)

When you have this glimpse of peace, His perfect peace-on the face of a child or in the midst of your own storm-remember this sense of 'serenity, tranquility ' can only be kept by keeping your mind centered on Him.

COSI Rocks!

Rylee knows what's coming!

Rylee's big blue eyes.

Aaron spent the entire weekend working...so the girls and I

packed up and headed to Columbus' COSI for the day.

Rylee sound asleep...and double parked!

Ryann discovering the difference between positive and negative attraction.

Checking out the NASA spaceship exhibit. Ryann was enthralled with the thought of gravity free, um, poop. Yeah...we need to get her out more!

Finding out what clouds are made of.

As a mother, I think it is very important to expose the girls to as many things as possible. With Ryann we work the intellect, with Rylee the senses. Culture, music, different languages, geography, history, science-nothing is off limits. Ryann actually asks to watch the Discovery Channel. She loves 'How it's Made' and 'MythBusters.' When we travel, we let her carry a map and highlight where we are headed. Like her mommy, she loves art museums-could sit for hours looking at an M.C. Escher print. Our van CD player currently holds Irish/Celtic music, Swahili tribal music, Michael Buble, and Third Day. Rylee loves hearing different instruments and will turn her head to locate the music. For Christmas this year Ryann has asked for 'Muzzy' in French. (A language teaching form of Hooked on Phonics) Keep in mind of course she can't read fully in English yet! Rylee responds well to different smells during her sensory play. Turn on her Beach Febreeze Scent Story and her ocean sound machine-she's asleep in five. Give her feet a massage with peppermint and play her workout music (currently the Monkees) and she is alert and wiggling. Ryann discovered a taste for all foreign food while we visited Disney's Epcot. (We had food from every country!) So, while trying to teach and broaden the girls' experiences...I sometimes forget we just need to have fun! So, next time you take your child to the museum, remember to see things with a child's wide eyed wonder.

Thing we learned while at COSI:

1.) If you are pushing a child in a wheelchair, that adult has free admission. Very swanky.

2.) You can tell alot about your body's nutrition, or lack thereof, by examining your bowel movements. I know this because every bathroom at COSI has 'poop facts' written in the stalls...and Ryann used the bathroom at least eight times while we were there!

3.) No matter how well behaved your child is...they will still get the giggles and point when they see a bust/sculpture that is naked. Grown men react much the same.

4.) Too much knowledge can be dangerous. In the Life Exhibit, they show a baby being born. Ryann now realizes that babies don't come out of their momma's bellybuttons...she also promptly resolved to adopt.

5.) People when given the opportunity to do good, will rise to the occasion. The staff and volunteers were very kind and helpful. (The COSI folks have got to do an exhibit on special needs children!)

6.) Children will not eat vegetables at home. They will however magically desire little green 'trees' and dressing soaked salad in an expensive cafeteria. Inevitably upon being seated, the 'grass' isn't so green on their side. Halfway through eating the discarded salad, while watching your child eat a gooey, greasy slice of pizza - you realize your child has discovered the art of manipulation.

7.) Cockroaches can hiss.

7a.) Mothers laden with camera, diaper bag, one child on a hip the other death gripping a leg, can move with the speed and agility of a cheetah.

8.) Healthy, able bodied people will always sit in the handicap section of the theatre. These same people will give you dirty looks and sigh, groan loudly when you ask them politely to move for your daughter's wheelchair.

9.) It is time for me to break over and apply for a handicap parking permit.

10.) You have to swallow alot of things to get out of jail for a day. See x-ray in Life Exhibit from inmate # 091-32w.

11.) A fulcrum, when positioned correctly, will allow a five year old to 'lift' a car.

11a.) That same five year old will find it impossible later in the evening to pick up any of her toys before bedtime.

12.) Frankie Jonas is just as cute as his big brothers.

13.) A banana, plus liquid nitrogen, makes a hammer Bob Vila would be proud of.

We made more great memories with the girls. And have had a wonderful summer! As always, thank you for your prayers and encouragement!