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!

Mobility 'challenged'

Update on Rylee's mobility 'issues'. As many of you know already, we've been trying since April to get Rylee in for a wheelchair fitting at our local mobility company. You all know how involved I am in Rylee's care, and can imagine how difficult it is for me when I have to wait and depend on others. The Leckey rep came down from Columbus to meet us with a MyGo seating system. The difference between it and the KidKart is startling. Rylee was actually comfortable in the MyGo-and it keeps her properly positioned everywhere. She has just enough movement to wiggle her hips or pull her legs into a frog position. The MyGo prevents this from happening-and finally...a seat where her arms don't dangle (is that the 'Hallelujah Chorus' in the background?). I think they decided to combine the MyGo seat with an OttoBock stroller base. The new head support keeps her head in midline and will be a huge help with her therapies. Please pray that Medicaid will approve this new product. It can be difficult getting authorization for something that isn't considered the 'norm.' (KidKart, Zippies, Quickies) Also, the state only allows for one wheelchair every five years-making it beyond important to choose the correct product now. The usual for other kids with low tone don't fit Rylee's extensive needs and finding a wheelchair that keeps her safe and properly positioned at all times will help with her overall health.
She sort of looks a bit like she's preparing for a roller coaster ride at Kings Island...but it's worth it to see her cute face! It's still crazy to see her sitting upright! The Leckey rep was surprised by how big she is at such a young age.





On to another topic-Rylee's Rally 2009! As you know, our first resource fair for special needs children was held this past March. We had 57 attending vendors and a little over five hundred people come through the doors. Well, this year we stepped out in faith and decided to rent the Field House. I know...yikes! But in true 'Field of Dreams' fashion...I really believe that if we have this resource fair again, 'they will come.' grin
About two weeks later, one of Rylee's vendors call. Not only does he want to sponsor the resource fair...(drum roll)...his sponsorship covers the entire rental fee! I know!
While we know we need to accept public/commercial sponsorship, I was concerned it would make the resource fair too commercialized, not as family centered. Now the money raised will once again go directly to the day's activities and providing a fun, informational environment for attending families.This year we are planning to organize a community fund raiser to give back too. We were fortunate enough to meet some wonderful, compassionate bikers last year at a poker run. We celebrated Rylee's third birthday raising money for Make A Wish at the run. Our hope is to do something similar at each Rylee's Rally-each year choosing a different non-profit to donate all the proceeds to.
We'll keep you updated on our progress! It's exciting to offer other families what we have from our family, friends, and vendors-unconditional love and support.
Wherever we go...that's where the party is at!

"Happiness cannot come from without. It must come from within. It is not what we see and touch or that which others do for us which makes us happy; it is that which we think and feel and do, first for the other fellow and then for ourselves." --Helen Keller