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

"This is an announcement from your public broadcasting system..."

We have been overwhelmed by the recent response to Rylee's website!
In one day we had two hundred hits-not much in the 'blogworld' but awe inspiring to us.
Everyone loves the new map-it's very 'Where in the World is Carmen San Diego.' Yes, I know, I've just dated myself! Ryann has become addicted to checking in each morning when she wakes up. I think we are going to have to buy her a globe for her birthday. Now that we've visited EPCOT she keeps asking why people from Japan, Spain, Ireland, and Morocco aren't checking in.
I would like to ask one thing of each of you though. Would you mind emailing us a photo of yourself/your family with a note of how you heard about Rylee, or personally know us. Maybe a picture with you in front of a landmark near your home? No pressure Laneros...but we are expecting an Eiffel Tower photo...and Aunt Rebecka we want a pic in front of Old Faithful! giggle
Aaron and I would love to make a scrapbook of everyone's notes and pictures. We cannot say enough how humbling it is, knowing so many people love and care about our precious little girl. While we may never meet each of you personally, be able to hug you and let you love on Rylee-I hope you understand what your support, encouragement, and prayers have meant to our little family.
Emails can be sent to deborah3ford@yahoo.com For those of you who prefer snail mail (there really is something to be said for old fashioned, hold it in your hand, letter writing) or want to send a postcard, just email me and I will send our home address.
Thank you for letting me ask such a big favor. This will be something tangible that we will always have-acknowledging the impact Rylee has had on others.

We are staying busy in the heat-I'll be posting some new photos soon-promise!
I will apologize for the song selection now-but we have some special friends we're sending it out to...
Maggie and Katie in Illinois, and Elijah in Indiana (aka 'Bubby') this one's for you.
Dance like there's no tomorrow!

Lost in Translation

Okay, so I've been dealing with a few things over the past week that have got me thinking. I know, dangerous! We've been struggling-trying to get someone to help us get Rylee a mobility product. She's been essentially without a wheelchair since April. The therapists call the seating and mobility company-no calls returned or, "we'll get back with you." Then the seating and mobility company calls finally this week, but somehow didn't realize Rylee's need was this pressing. To make a long, emotional roller coaster (I laughed, I cried, I ran the gambit of emotions) story a tad bit shorter - between wanting to throttle everyone, throw in the towel, promising myself I will never depend on others again, and realizing that I should probably be on medications...
I hear, in that blue eyed, Paul Newman drawl, "What we have here is a failure to communicate." Yeah-that Cool Hand Luke sure knew what he was about...except for that whole egg eating episode...but I digress.
Think about it-failure to communicate properly affects every aspect of our everyday lives.

You tell your boss you are ready for more responsibilites.
Translation: you want a raise.
Result? You now work weekends.
You overhear a well meaning church member whisper to another, "Have you heard...?"
Translation: girl, I've got some great gossip!
Result? A person that needed support and encouragement feels a confidence betrayed.
You tell your husband you feel a little frumpy.
Translation: honey, tell me you love me just the way I am-weight gain, stretch marks, and the occasional sweat pants.
Result? For Christmas he buys you a gym membership.
Your husband says he is "fine" after a twelve hour day at work.
Translation: Um, well, with guys it's simple. He really is "fine" but would rather watch UFC fighting than hash out the entire day.
Result? You feel like he doesn't want to 'share' his feelings with you. Wife ends up pouting the rest of the evening, feeling ingnored. He is watching UFC fighting unaware of the storm brewing!

Everyday we have chances to not just effectively communicate but also connect with those around us. Appearantly someone, or all of us, were not clear enough, adamant enough about Rylee's specific needs. Rather than have hurt feelings and wallow in the frustration - I have to connect with all these people to ensure Rylee gets the best care possible. (Yeah, I'm learning humility on a whole new level! grin)

Maybe that's the whole key to productive communication? Connecting with the people you are speaking to. Listen, don't just wait for your turn to speak.

There's a really cool spiritual parallel here too.
While doing for Him, sometimes we forget to really listen to His leading.
Result? We're tired, used up, spent, living a life of obligation rather than obedience to Him.
Translation: We aren't really connecting, plugging in to Christ.

Aaron was talking to me recently about how God uses the Holy Spirit to be our translator.

"And I will ask the Father, and he will give you another Counselor to be with you forever-- the Spirit of truth. The world cannot accept him, because it neither sees him nor knows him. But you know him, for he lives with you and will be in you." John 14:16-17

Sometimes we lose something in translation. From the Word to our heart, the meaning goes missing. That's where the Holy Spirit comes in-reminding us of His purpose for our life. While the Holy Spirit gives us God's guidance or truth...the Holy Spirit also intervenes for us, making sure we get the best God has for us.

"And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will." Romans 8:27

As christians, we ask for what we want, often neglecting what we really need. But He listens, knows the desires of our hearts. And just maybe, if we stop and really listen...'failure to communicate' could change to a 'fullness of connection.'

"May the grace of the Lord Jesus Christ,

and the love of God,

and the fellowship of the Holy Spirit

be with you all."

2 Corinthians 13:14