Christmas 2008

There seems to be an expectant stillness tonight. All is calm, the tree so bright.
As I tuck my own sweet girls in tonight, it's hard not wonder what it was like on that first Christmas night-and the events that led up to it.
We were so excited to be expecting-dreaming up nursery designs, the perfect names. Our friends and family spoiling us with gifts, love, and encouragement. Strangers would smile as I wobbled through WalMart, 'laden with child.' Tests and doctor trips, phone calls to update everyone...for me-'cankles,' stretch marks, and ten months (only men say you are pregnant for nine months!)-were more than worth it. To share some small part of creation, to feel life move within you is so amazing.
But it wasn't like that for Mary. Here she is promised to this guy, she's kept her body pure waiting for him. Like something on 'Days of our Lives' she discovers she is pregnant...but not from a doctor...an angel of the Lord tells her that she has been chosen to carry a child. In shock, she needs to confirm what the angel Gabriel said.

Luke 1:39-45
At that time Mary got ready and hurried to a town in the hill country of Judea, where she entered Zechariah's home and greeted Elizabeth. When Elizabeth heard Mary's greeting, the baby leaped in her womb, and Elizabeth was filled with the Holy Spirit. In a loud voice she exclaimed: "Blessed are you among women, and blessed is the child you will bear! But why am I so favored, that the mother of my Lord should come to me? As soon as the sound of your greeting reached my ears, the baby in my womb leaped for joy. Blessed is she who has believed that what the Lord has said to her will be accomplished!"

She tells the man she's promised to-dread filling her heart as she unconsciously places a protective hand on her flat stomach. Joseph was a good man...but that's a lot to soak in. He was the type of guy you brought home to mom-always putting in an honest days work, fair with those he dealt with, thoughtful of others, and of good lineage (the house and line of David-Luke 2:4). Mary's parents must have been waiting, breath held, as they eavesdropped on the conversation. What would become of their daughter if Joseph would not keep his promise? The Bible tells of the fight within Joseph's heart. (Matthew 1:19) He didn't want her disgraced, yet the child was proof of her impurity, right? As he planned to divorce her quietly an angel appeared to him in a dream. He stepped out in faith-they quietly prepared for the birth of this Jesus child. The Bible leads us into the decree that went out-even in those days taxes were a reality that waited for no man. While pledged to her (not sure on customs back then, but the verse reads as though they are engaged/'promised' but not married, Luke 2:5) the little one is born.

I had a wonderful midwife, my husband supporting me (even though we had to wake him up!), a clean room, and of course of most import...an epidural!

Mary was so tired already-traveling so far and carrying such a burden...in her womb and heart.
While having contractions, Joseph is frantically pounding on doors, asking for a room and a clean bed. Finally they were given a corner in a barn. While most would think of the negatives, Mary strikes me as the type that wouldn't have been bothered by the odors emanating from the barn floor, the noises of the animals in the next stall over. Of course, when you are in labor, your focus is single minded...get that child out and count fingers and toes.

The girls had so many visitors those first few days in the hospital. My girls had paparazzi their first year of life-photos of every first...tooth, haircut, steps, strained peas...if we didn't catch the mind blowing moment (I mean really, surely no other child is this intelligent and beautiful?!) rest assured the rest of the girls 'groupies' would have triplicates made by the next day.

Mary and Joseph celebrated-not with family and friends, through an announcement in the paper-with shepherds and barn animals (not positive on the dates of the wise men and their visit, but it was when Jesus was older). The shepherds did a great job spreading the word after their visit. And don't feel too bad for the baby...I'm pretty sure Jesus is the only child heralded by the Hallelujah Chorus courtesy of angels. Pretty impressive.

Luke 2:8-12 And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ[a] the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."
Luke 2:13-20 Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men on whom his favor rests." When the angels had left them and gone into heaven, the shepherds said to one another, "Let's go to Bethlehem and see this thing that has happened, which the Lord has told us about."
So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. When they had seen him, they spread the word concerning what had been told them about this child, and all who heard it were amazed at what the shepherds said to them. But Mary treasured up all these things and pondered them in her heart. The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.

I so love that little verse..."But Mary treasured up all these things and pondered them in her heart." Mary may not have had digital cameras, HD camcorders, and scrapbooking paraphernalia-she had crisp, clear life changing memories recorded on her heart. After all...it's pretty tough to forget a personal conversation with an angel! Later, as her son Jesus grew in stature, wisdom, and favor - Luke records a similar verse (Luke 2:51). Like many mothers, Mary had an innate ability, a mommy instinct, to realize the importance of being a mother to this blessed child.

What an awesome privilege to carry a child, let alone three, to term to feel them move within me-to know their face and names.
What an awesome privilege and responsibility to raise the Christ child, God made flesh to dwell among us. And you thought Dr.Dobson set the bar high! grin

We always love reading the nativity story-this year Ryann has already asked for it several times. I hope you all will take time to remember what the Christmas holiday celebrates-especially those of us who are mothers. Think on, treasure time with your little one...like another Mary choose that 'one good thing' (that's a whole 'nother entry Trish! giggle) and teach your children about Him-through your life and love for them.

To all those who continue to be faithful prayer warriors for us-To all those who have touched our hearts, even though you've never touched our girls-To the folks who help us care for Rylee, her medical team, crazy PICU nurses!, therapists and family/friends-To those who read and check in daily but may never leave a note...
Thank you for loving us so much-it constantly humbles us that so many people care about our little family.

May God's peace and blessings fill your hearts to overflowing.
Merry Christmas and God bless-
The Family

Christmas...

December snuck up on us this year. We just put up our tree this year, and I've yet to attempt the mall mayhem. Holidays honestly are bittersweet for us. While so very thankful for the time and memories made with each of our girls...always in the back of our mind is the wee one that has passed. While we only held her for seven days before God completed His perfect plan and called her home to rest, I held her under my heart, felt her move for much longer. I prayed for her, for our family-my mommy heart cried out with a desire to keep her, to know her, to love her...knowing fully that she would also have this devastating disorder. Many people forget that we had another little girl-while the daily reminders linger here. The smell of Johnson's & Johnson's on Rylee, Ryann talks of her sissy in Heaven-during night time prayers saying in her little six year old voice, "Oh yeah Jesus, hug sissy Kaymaen and tell her we love her lots but that we are doing okay and we're glad she's running around up there driving you crazy." Hanging ornaments that we bought for her the Christmas before her birth, occasionally coming across a tiny sock or onesie that was lost in a dresser drawer. For us time hasn't healed completely, but it has allowed God to teach us better to cope and how to find Him in the storms of our life.
Most families will tell you the loss of a child is ever present. People assume this means you dwell on it, obsess on those 'what could have beens', that you have no closure, that your sorrow is all encompassing. But what they really mean is-they don't want to forget the importance of having that person in their life...no matter how long or short that time was.
I wish I could tell you we've arrived. But we haven't.

Here's what I can tell you-we cling daily to the promise that "joy comes in the morning" and that He is here with us. And each day that we wake up, we discover that His mercies are new and perfect. We love the verses about Elijah (1 Kings 19) fearing for his life, hiding in a cave (obviously forgetting chapter 18!)-searching and waiting for God. As he stood at the cave entrance he learned quickly that God wasn't in the wind, the earthquake, the fire...but in the quiet, still whisper.

"Be still and know that I am God;..." Psalm 46:10

While we gear up for the Christmas season, get caught up in the hustle and bustle of holiday sales, spend time wrapping presents that will be ripped up in seconds, address Christmas cards, attend parties and visit family, learn the last refrains of the church cantata...

...remember that the holiday season is a time to celebrate God made man, in the flesh, dwelling amongst us. The scriptures and promises of the old testament, brought to life. What was written then still applies today in every situation in your life, in our life. He isn't in the wind of worry and weariness....as life circumstances shake the earth around you...as the fire intensifies and closes in around you...

He's there. In the quietness. Waiting for you.
"Come to Me, all you who labor and are heavy laden, and I will give you rest."
Matthew 11:28

We've found Him. In the stillness of a hospital room praying over Rylee. In the quiet hours of the morning watching Kaymaen's spirit pass from our hands to His. Pushing sweaty hair back from Ryann and Rylee's faces as they dream and breathe deeply. In Ryann's deep laughter, head thrown back, no cares in the world-childish giggle while being tickled. When Rylee sighs loudly during a sermon, seeming to anticipate the invitation...and getting out of her wheelchair! As Aaron and I sit on the couch, snuggled up together, the only lights coming from the Christmas tree. He's here.

He knows us by name. He has plans to prosper us. He has called us according to His purpose. He continues to bless us daily. He sends us the right people at the right time-medical professionals, friends, families, strangers-to encourage us.

So while the holiday season is bittersweet, it's also a reminder to stop, be still, and listen. And that our joy is in the Lord-we can remember and miss someone but we have the joy of knowing that we will see her again in Heaven.

We reflect on the wonderful year of memories we've celebrated together, we are more thankful for the miracles in our life-a Godly marriage, an active personal heart knowledge of Christ, additional time with Rylee and small improvements in her overall health, Ryann learning and growing into a compassionate, inquisitive little girl.

We are so thankful for His leading in our life. Thankful for each of you who regularly check in on us and have become faithful prayer warriors on our behalf.

Merry Christmas to all...

Summer is officially over...

We woke up this morning to a sprinkle of snow. Which of course means our mandatory 'house arrest' begins for the long cold months. Honestly? I hate this time of the year-wondering when that proverbial shoe will drop. But rather than wait for the next pneumonia, hospital visit, or medication change...we just wake up each morning, aiming to swing our legs over the right side of the bed. As bare feet hit the cold wood floor, we remind ourselves that all we really have to do is put one foot in front of the other. It's also nice to remember that we had another season of memories to lock inside our hearts.

(cue music) Ode to the Summer of 08, "scroll it!"

We met our emails/late night phone calls/care package buddies from Maine. Olivia's mom and I 'met' by phone when the girls were just a few months old. Since then it's been a flurry of questions, shared advice, discussing medications and therapies, lengthy discourses about our children's bowel movements and seizures, giggles over our crazy husbands, listening to each other vent and then telling each other to 'suck it up', and um-well, you know...it's our version of those best friend movies you love.

Angie is the Thelma to my Louise...the 'wind beneath my wings'...

It was awesome to hug each other and do the ugly cry with each other (note to self:next time invest in waterproof mascara). Since Livie is eight days older than Rylee, we celebrated their fourth birthdays together too.

(clothing by TrishScott Couture, Princess accessories courtesy of Fitzworld.)

Another chance to wiggle toes in the wet sand, listen to the surf, feel the hot sun and breeze on our faces. While the water was cold, she did lay out for a bit under her umbrella and eighteen coats of SPF 50. Even after multiple baths, two weeks later we were still finding sand in her um, (cough) creases. Yeah...she makes chunky thighs look good.

Discovering her 'inner diva.' Thanks Ms. Tootsie!

While we see Ryann's more dramatic side all the time at home, in public she tends to be very shy. She can also be way too serious for a little kid-so, anytime we can encourage her to just be silly, we do. Daddy was the paparazzi - work it girls!

Ryann decided she wants to be a 'star' dah-ling.

Photos like this make you wonder just what is going on in Rylee's head.
"Dude, I thought mice were small!"
"Seriously, people stare at me?"
"When's dinner?"
"What was Walt thinking? Steamboat Willie?"
"My what big eyes you have..."


Dinner out at Raglan Road. Since all our girls have Irish names, we took them to a pub where the girls actually dance on top of the tables to live music. Rylee tried a bit of the vinegar for the bread, and stayed puckered up for about five minutes.


World travelers...sort of. Ryann finally tasted Chinese and fell in love with it...the waiter...and chopsticks (seriously, she still has them under her pillow!). Rylee slept through the whole thing-waking only in time for a French pastry. We came, we conquered, and we ate - at every single country! Ryann decided she wants to be, and I quote, "Chinese" when she grows up and plans to "study abroad in France" then settle down in Morocco with Prince Aladdin. Yeah, I didn't have the heart to tell her EPCOT isn't the world. (Note to self:Ryann needs a globe for Christmas.)

March of Dimes Walk. We didn't get to come out as a family due to the weather, but the turn out was great. Everyone seemed excited to be there and happy to help.

Our friends the Osburns, walking in style.

Volunteers from the Woman's Club...look, I was getting tired of the normal group photos! I talked 'em into showing some leg. No word yet on if they will ask me back to the be the photographer again next year!

This summer Rylee discovered she could giggle.

Her parents discovered there is no better sound in all the world!

Rylee learning and completing some of her daily visual tracking programs.

Who needs words when those eyes can talk?

Road trip! Looking at this photo I'm thinking Rylee may give to Locks of Love soon. Ryann gave for the second time this summer. Another two braids-12 inches-each. This was her second time...in less than two years to give to Locks of Love.

It's not fair that my children use more hair product than me, and have better hair!

Rylee 'double parked' inside one of COSI's exhibits.

Ryann discovered that momma wasn't right-babies don't come out of their mommy's belly buttons. (I swear I was going to tell her soon!) She promptly decided to adopt when she grows up.

"Wheelchair Gate 2008" has finally come to an end. While there was no Deep Throat (although my throat got hoarse from dealing with everyone), I definitely was thinking of starting the impeachment process! Thankfully Rylee is mobile again after six months of 'who's on first.' We learned once again, no one will advocate for her like us. Hopefully those involved learned how to be more efficient, and no other family will have to go through what we went through. Case closed, 'nough said!

Some of Rylee's equipment for therapies...yeah, we need a bigger room!

Rylee rocking out her knee socks. Being special needs is no excuse for poor fashion.

Leaving our mark...
Cliff Notes of 'Days of Our Lives' with Waiver and APS (the state program and their authorization company that determines how we live our life with Rylee). On second glance, during the 'negotiation phase' (their words, not mine), APS decided that indeed Rylee did qualify for nursing care and respite/community services. Once again God intervened and her care budget went from being cut 75% to almost the same amount we had last year. Huge relief... God is good, all the time. Please pray that God will once again place the people in our life we need at just the right time-we still are in need of a night time nurse. While I know better than to pray for patience...it is tough to wait on His timing!

It never ceases to amaze us that the people in place to help our families, are inevitably the ones we must fight the most. I wonder about the families that don't have the time, energy, or knowledge to fight-to insist on better care and services. Who stands up for them, for their families? Hopefully by standing in the gap, being honest yet firm in not settling for less, shakes things up a bit - makes it better for those that come behind us.

Rylee's Rally 2009 planning is moving with shocking speed. We rented the town's field house-three days later the fee was paid in full by one vendor who attended last year. We are encouraging the community to really think outside the box this year. We covered dyslexia and ADHD, juvenile diabetes, asthma to therapies and specialty clinics, to behavior disorders, then on to pediatric cancer and life-threatening illness, financial resources, programs, recreational activities, and alot of other things in between. This year we plan to have our 60 vendors from last year, but also companies who make hypoallergenic and/or all natural products, vendors for spas (for aquatic therapy and to release stiff joints/spasticity), special needs toy stores, a mattress company (mattresses that help cut down on skin breakdown/pressure points), ...the list goes on. The field house has 20,000 sq. feet of space - so I'm kind of feeling that 'Field of Dreams' sensation. But last year proved, if we do it, they will come!

For those that have asked, Sophie is doing well-but grew a bit bigger than expected. Actually probably a good thing since Ryann and Rylee partner up for Evil Kanevil wheelchair stunts throughout the house. After the flushing, I mean burial of our goldfish-Do, Ray, and Me-we weren't sure about getting another family pet. She's proven to be a very sweet dog and a wonderful addition. Each time I see her trot after Ryann, I hear that song in my head..."people let me tell you 'bout my best friend..." Sophie loves Rylee out of the wheelchair, not so much though in the chair - she probably has doggy nightmares about being chased! grin While she has learned to fetch, like everyone else in our family...she marches to the beat of her own drum. Learning to sit, beg, or roll over doesn't cut it around here. Instead Ryann taught her how to play 'boneless' in honor of our favorite author Mo Willems and KnuffleBunny. I still haven't figured out how yet, but she also taught the dog how to rub her belly. By saying 'her' I mean, Ryann. Yep. Sprawled out on the floor is my child, with the dog rubbing her.

sigh...We are so proud. (sniff-sniff)

Aaron continues to stay busy with work. Yesterday morning he sat up in bed, muttering something about how he "trips over hormones as soon as gets out of bed." He isn't traveling out of town as much so we are enjoying all this togetherness! grin While it's been tough changing our lives around these past four years we must constantly acknowledge how God has taken care of us physically, emotionally, and financially. Aaron and I never take lightly the gift He has given us, the trust He's placed in us to be parents of all three of our girls, and how He's grown us up more in Him and as a couple.

That's all for now-surely this will keep all the natives down to a dull roar.

Thanks for checking in on us. Continue to pray for Rylee's overall health-and that all of us stay healthy throughout the winter. It still amazes Aaron and I that people still check the page daily - even from overseas! Humbling to think folks take time out of their own day to love us (even from afar!) and be faithful prayer warriors on our behalf. Please know that while we may never met some of you personally - we can never express enough what your love, prayers, and encouragement have meant to our little family. Love from us all. And-we can't wait to get out again in the Spring and see you!

New post coming...

Check back this afternoon for an update-

I'm trying to add more photos as requested!

Thanks! - Rylee's Secretary

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.

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!

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!

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!