Up and Running

What a month we've had! The holidays have come and gone (healthy for all, praise the Lord!) and we officially survived the Snow and Ice Storm of 2009...courtesy of our new Troy-Bilt generator. As we begin another new year-we wanted to begin with thanking each of you. The continued encouragement and prayers mean so very much to us. While some of you may never meet us, touch Rylee personally-your emails, web posts, notes, calls, and cards have touch our hearts. To those of you locally-can't wait til Spring when our mandatory house arrest is over and we can get out and see you all!



As is obvious from the photo, Rylee is getting so big! In the past month she has cut four additional teeth, only one more to go...of course that one would have to be in the front! She is doing great in her new wheelchair, acclimating well to the more upright position. Having her head in midline also enables her to look around more, and she's gaining ground on visually tracking objects and us on a more consistent basis. Aaron and I laugh because it seems so strange to see her big and tall, positioned correctly, and actually looking at us! While it looks a bit like a KingsIsland ride, we think she rocks it out! She gets fitted for AFO's (feet splints) this month, better aligning her feet and taking some stress of her hamstrings. I've stocked up on crazy knee socks to go under the splints (see above) because honestly...being handicapped is no excuse for poor fashion! We had her yearly meeting (IEP) with the school who has accepted our request to continue homebound schooling-meaning we will still have a teacher once a week and all our therapies maintained during school months. We will be transitioning into kindergarten...kindergarten, can you believe that?...which means a new teacher. Please begin praying now that God will once again send us the right person to give Rylee the best care possible. We are rather spoiled-our teachers, therapists, medical team treat us so well, change is always tough. The new year begins our third year without a constant night time nurse. Her Waiver budget allows for us to have a nurse at night to monitor her seizures, keep her clean and dry, and do medications and tube feedings. Our problem? Keeping a nurse! I could give you all the Jerry Springer/Days of My Life/All My Children without Susan Lucci details but it's too crazy...seriously! Cliff Note version-please pray God will send a special lady to care for Rylee like family. Our PICU nurses, home health nurse Becky, Roma & Darlena with Hospice, and Nurse Valerie have ruined us! How can one settle for the rest, when we've had the best I ask you?!
This really is a huge need in our life. Since bringing Rylee home four and a half years ago, I've been the main caretaker, while Aaron provides for us financially. On a good week, I get around four hours of sleep each night. When she is sick it's usual for me to go a few days without any sleep at all. Having a nurse here at night means Rylee continues to get realistic compassionate care...and I can get some beauty sleep! Believe me, I'm long overdue!


This is a great pic of Rylee in her wheelchair-with all that gorgeous hair! Rapunzel's locks are now down the entire length of her back. Big sister Ryann has cut her hair twice (12 inches each time) for Locks of Love...but I just can't bring myself to cut RyleeBug's hair yet. Her curls are too pretty!

Smooches between the girlies. sigh. Seriously, how gorgeous are our girls?!

One of our Christmas gifts was a web cam for ourselves and Rylee's best buddy, LivieLou in Maine. Angie and I have had such fun talking, and letting the girls 'grouse' at each other. Livie and Rylee are eight days apart in age, and she has the same disorder. We had the awesome opportunity to meet them this summer through Make A Wish. What a sweet family-just wish they lived closer!

As mentioned earlier, we survived the Winter Storm of 2009. We were without electricity for a week. Certainly makes you thankful for the small things...um, like heat! Our electric was turned on right before the Super Bowl party. Aaron and the girls watch the big game each year.

Super Bowl 2007-Rylee had a 'wardrobe malfunction' right before and didn't make it to the party. Actually she had a huge blow out (as in up her back and out the sides of the diaper) and promptly became Rip Van Winkle!

Super Bowl 2006

Daddy curled up with all the girls for Super Bowl 2008. Poor Aaron...even the dog is a girl! Sophie likes to look after Ryann and Rylee, and doesn't like to miss out on anything.

Ryann and Sophie couldn't wait to get out in the snow. This was her first year to go sledding. We all had a few runs on the 'Saucer of Doom' (aka the garbage lid) and Aaron and I were reminded the next morning of how old we are getting! Ryann loves school. She also has become quite the little artist-drawing on, and consequently saving, every scrap of paper she comes across. Her room looks like a recycling center! She also has a new 'friend.' "Senor Pepe" prefers KLove, is a vegetarian, needs water before bed, and loves long walks on the beach. He also likes to be addressed with a Spanish accent even though 'no hablo en espanol.' Ryann opened her first savings account, which like all things Ryann was an adventure in and of itself! I have no idea where she gets her flair for the dramatic! (no comments from the peanut gallery! grin) The teller was very kind, speaking to Ryann as though she was a six year old...not a twenty year old trapped in a six year old body. Mistake numero uno. (Maybe Senor Pepe is rubbing off on me!) She asked if Ryann wanted to open an account for her pennies, to which Ryann responded while plunking down close to $80,"No ma'am, I need to open a savings account." The teller says, "Are you going to buy lots of Happy Meals?" Ryann gathers herself up, tilts her head a bit higher and says, "No ma'am, I'm saving to travel abroad. I want to visit Paris and maybe Venice before it's underwater." Yeah...I know, we can't even begin to imagine the teenage years!

Hope all our groupies like the new layout and design. Felt like we needed a bit of an update. Be sure to keep posted on Rylee's Rally 2009. Looks as though we will double our numbers for last year, meaning around 100 vendors this time around. Please begin praying now that God will once again open doors and hearts in the community. Pray the Lord will use the day to minister to other families like our own-parents desiring to give their children the services and care they desperately need and deserve. Aaron and I are also praying that God will allow us to serve special needs families year round, as a couple. He's already laid a specific idea on our hearts-pray we can wait on His leading and timing, and have discernment to know the right way to go about achieving it.

We will keep you updated! And again, thank you for continuing to take time out of your own hectic schedule to check in on us. God bless!

'Only a life lived for others is worth living.' - Albert Einstein

In an effort to stay 'cutting edge'

and in honor of the new year,

the RyleeBugGroupies site is

temporarily

under construction.

Sorry about the delay in posts-

but remember the old adage,

"no news is good news."

Looking forward to a fresh

new page layout

and video stream along with

our usual posts and photos.

Please check back Monday

for our new look!

This would be a great time to leave

comments on what you'd like to see

on the updated site,

or to catch up on past posts

which can be located to the right in 'archives.'

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!