Thanks for making us so happy...

Happy Birthday to our chunky monkey!

We love you very much RyleeBug.

You teach us daily that happiness comes from the ability

to feel deeper, to revel in the little things,

to think with an open mind, and to seize each day.

We are so thankful for and proud of our girlies.

Daddy and Momma

Tuesday, June 16th

One year old

Two years old

Three years old

Four...almost five!

text to follow later tonight...

outer banks trip

Spring is in the air!

Every year we dig in our heels, hunkering down for winter, our self enforced lockdown to protect Rylee's immune system. At the point of total, mind numbing, stir-craziness we realize that while we were busy going about the mundane Spring arrived. We begin peeking out the windows, unheeding of the dire prophesy of Punxsutawney Phil the groundhog. The tiredness of sepia tones change quickly - a glorious green begins to move across the lawn, spreading to low lying plants; sneaking up tree trunks, causing limbs to look as though they also stretch and yawn after a long slumber. I find myself humming 'Singing in the Rain' and sincerely feel as carefree as Gene Kelly's character.

Before the big freeze we snuck in a few fun things. Had a great time giving a mom the night off. Our backyard became Camp Davis as we shooed our friend Allison off and giggled all night with our girls and her two-Kayla and Ryan. 'Somehow' (winkwink) Aaron ended up in the tent while RyleeBug and I snuggled into the king size bed. At 2am my cell phone rang, Aaron was raising the proverbial white flag! I slipped out quietly, wondering how our neighbors could be sleeping. From the lantern glow inside the tent it looked like a circus. Think Ringling Brothers and those crazy motorcycle guys in the big call-buzzing round and round, coming within inches of each other, never slowing or touching...now, allow the circle to become the tent, and the kids become Evil Kenevil. Or maybe that was Aaron? Anywho it was great fun-there is nothing like a s'more cooked over the open fire.

During the big freeze we, along with most of our area, went without electricity for a week. Ryann enjoyed being out of school...for the first day! After which she informed me, "I love you and all mom, but you and sissy are pretty boring."


This year marked Rylee's first winter with no major illness or hospitalization. Can you believe that? I still almost hate to type it, afraid of jinxing something intangible-knock on wood when you read that line okay? I think we'll be safe after that.


Rylee had one minor head cold that didn't require antibiotics or suctioning. She finally has a productive and consistent cough, and continues to control her secretions. We are anxious to see our Dr. Jones, expecting her to have fattened up a bit more through the winter months. It also looks as though her hair and legs are now growing at the same speed! If I were a betting girl-I'd guess she's now a fifty pounder, and closing in on big sister in the height department. Rylee's therapists are pleased to see her making small, but steady progress with her visual tracking programs. It still takes us back a bit when we talk to her and she turns her head (and all that hair!), often looking right at us for a minute or so. Keep praying for smiles-that's our goal!

Mr. Dave from Hanger Prosthetics & Orthopedics came out to fit Rylee for bilateral AFOs (layman's terms: right and left feet splints). We also have a night nurse-Miss Darlena comes out four nights a week so that I can get some much needed rest. The first few weeks were tough-after five years of no sleep, your body actually gets used to it! Instead of worrying about Rylee having a seizure in the night and needing help-I have the pleasure of only worrying if Miss Darlena will spoil her too much! Thank you for all your prayers throughout the winter months. We all hate and dread the mandatory house arrest-missing our church family and friends. Please continue to pray that she will have a healthy, happy summer. Can't wait to get the girls out and about. I have the whole summer planned, waiting only for that last school bell to ring!



Rylee's Rally has come and gone. Another successful year! We had eighty full tables this year, with around 75 vendors/agencies represented from our tri-state area. I'm trying to get that page updated too-so be sure to click on the Rylee's Rally logo on the top right side of our family page. It will take you to the rally page for pictures. I cannot say enough what a pleasure and blessing it is to meet the families, vendors, volunteers, and sponsors each year. 2009 marked huge community support-allowing us to feed around 750 people free of charge, add fun activities to the day, awesome door prizes for our families, and volunteers that remind us that people when given the opportunity will rise to the occasion. Aaron and I were able to hold and love on some of the kiddos that we've prayed for, talked to the parents over the phone with, or visited on the hospital floor. We are constantly reminded that 'love conquers all' and makes us all wonder what could happen if we fully surrender to it. Please continue to pray for these remarkable, inspiring families.


Meeting Teri w/Adaptive Star-the folks who made Rylee her Bug-Mobile. She flew in from Washington state with products for the families to try out at the Rally.

www.ryleesrally.blogspot.com

Ryann is approaching the big seven-and counting down to her fall birthday. She lost her first tooth this weekend, waking up in excitement upon discovering the ToothFairy left pixie dust in her tooth bag and a $2 bill. Inflation! At the risk of sounding 85 years old, I remember when you only got a quarter. She is now reading everything coming and going-tackling level 3 and 4 books with ease, barely slowing over a difficult word. Ryann also writes, and writes, and writes-and will allow us to throw away nothing. Aaron and I often find sweet notes tucked into a cubby or under pillows-and as the mother I am occasionally subjected to the 'I am sad, you don't love me, I'm planning a walk about in Australia and may never return.' (roll eyes) Yes, my child is entirely too intelligent-but hilariously melodramatic! Usually these notes crop up around chore and/or homework time, or whenever Sophie needs the pooper scooper. Ryann has discovered a love for Captain Underpants books-reading them and then putting on plays for daddy, momma, and sissy. (At some point she will read this blog as a teenager, this photo alone causing weeks of teen angst! giggle) Below is Ryann as (drum roll please)...Wedgie Woman!


Sophie recently became an unknowing art project of Ryann's. Our poofy-mop like doggie was 'decorated' with glue and bows. When Ryann told me she was working on 'impressionist art' I thought she'd draw a face picture-nose on forehead, ear on chin...not glue all over, bows on dog bum! giggle Sophie looked like she had mange! After a traumatic trip to the groomers, our little Sophie now looks like a Schnauzer. Good news? She can see and no longer runs into walls. Bad news? Um, she's embarrassed to go outside! She looks like the before and after shots on those 'My mom is stuck in the 80's' makeover segments. sigh Life is not dull around here!


That's all...for right now! Please continue to pray for our girlies-their overall well being in every area. Pray for Aaron as he works long days to care for us. Remember too all our friends and their families. The Fitzpatricks honored little Fiona's first birthday in Heaven with their other two daughters. Katie and Maggie are doing well in school, but missing their little sissy. After a long winter of hospital stays and separation (dad Mike, is currently stationed in WV for work) the McLaughlin family is spending this week at Give Kids the World/Disney World on Ellie Kate's Make A Wish trip. (Shout out to our Disney RyleeBug Groupies-hug 'em all for us! We miss all our WishLounge girls and our Wish Fairies!) LivieLou is venturing out with her mom and dad-continuing to progress with her vocalizations and charming the pants off everyone in Maine. Our man Trenton is sitting up big and tall-and breaking hearts with that pouty lip! The Laneros are enjoying time with their little man, Marc-Philippe, watching as he grows big and strong-such a happy little guy (give him a kiss from his Tante Deb)! Please keep them all in your prayers. Each family has meant so much to us-encouraged us when we were down, reminding us to be ever thankful and watchful for the little things, sharing their joys and sorrows with us, trusting us with their hearts. How grateful we are for special friends.

We can't wait to see everyone this summer and are so thankful to friends and family, and special aunties, who've helped us weather another winter.

What does love mean to you?

1 John 4:8 "...God is love."

If we could bottle what we've learned over the past seven years with all three of our girls, it would be hard to label it. The FDA wouldn't approve our NyQuil-like commercials...sneezing, stuffy head, so you can rest...would be unconditional, full steam ahead, so you can be your best...is an unbelievable claim. This elixir that clears all that congestion in your head and heart, makes the coughs of life fade to a minor irritation, and causes people to stop and really think differently could only be labeled 'love.' Wal-Mart would stock it right beside the heart medication and anti-depressants. A little below the allergy medication since it certainly clears one's eyes, and I'm sure Tylenol and Advil are a bit upset to share their valuable pain reliever space with this interloper.

The ingredient label would include patience, kindness, humility, sprinkled with a liberal dose of contentment. And don’t worry it’s not like other ‘feel better quick’ fixes, there are no additives of anger, rudeness. It’s a product you can trust and hope in, protecting you and your family-and oh yeah, the magic ingredient is a preservative called grace. There is no self serving size-just apply liberally as needed and be sure to share. Unlike the television or QVC commercials you can’t work enough to get it (Eph. 2:8) and there is no magical $19.99 plus shipping fee-it’s actually, shockingly…free.
Faith, hope, and love (rabbit trail, I love that Point of Grace song!) are so important in our every day life-but the greatest of the three is love (Hebrews 13:13). Corinthians defines love on every level. What it is, what it isn't, and what it does.

I Corinthians 13: 4-7

"Love is patient, love is kind.

It does not envy, it does not boast, it is not proud.

It is not rude, it is not self-seeking, it is not easily angered,
it keeps no record of wrongs.

Love does not delight in evil but rejoices with the truth.

It always protects, always trusts, always hopes, always perseveres."

While most understand love in the noun form, it’s important to experience it in the verb tense. In the past month God has clearly demonstrated love, His all consuming unconditional love, in our life. We had the privilege of sharing time with the Fitzpatrick family in Chicago, as they honored Fiona’s life. We watched as they hugged and reassured family and friends, even in the midst of their own grief. They’re mommy and daddy hearts were already racing ahead, wondering how they could help Fiona’s big sisters cope and learn to express their feelings and concerns. A newspaper article reminded us of an event a few years ago affecting two families in our own church. A wife and mother gave of piece of herself to help a man dying and in need of a healthy organ. While they knew each other in passing, through a selfless act, they are now bound together in love and a shared desire to see the other succeed. What greater love is there than when one lays down his (or her) life for another?
This type of self less love is hard many times for us to grasp let alone give. Aaron and I talked about this in depth on our nine hour drive home from Chicago. Aaron mentioned the quote, “It is better to have loved and lost, than to never have loved at all.” Which really got us into a heart stretching, thought provoking conversation that spanned a few hours, and states. How can people really live without having loved. But let me say that we mean selfless, giving with no expectations, no holds barred, unconditional, accepting love. The type of love that Jesus showed by giving His own life in exchange for ours. Why do we have such a hard time learning and showing the truest form of love? Indiana brought us many ideas, but in Ohio we finally got a handle on it…or at least in our opinion!
We don’t love on this depth because it hurts…it hurts us. When you put your heart, and emotions, on the line and involve yourself – you stand the risk of rejection, hurt feelings, miscommunication, facing head on your own fears and insecurities.
But how can we really know what it’s like to live a life abundant in Him, without receiving ourselves and then giving His love to others?
When you think of Jesus’ time here on earth He was constantly loving others, no matter the cost to Himself. His love for Mary, Martha, and Lazarus led Him to weep openly when He heard of Lazarus’ death…but remember how that story ended? A doubter, denier, and deceiver were among those that He loved and taught daily. He gave His own life to redeem ours. (John 3:16)What kind of love is this?
We see God’s love daily. From friends who visit us during long intensive care stays with Rylee. The nurses who care not just for Rylee, but our entire family-bringing us a homemade dinner instead of mystery meat from the cafeteria, or sit down to listen and encourage. A doctor who came out in the middle of the night to help us when Kaymaen passed away. Through Rylee’s babysitters who take their own time to come out and give me a break, excited to get a grin…or gas!…out of her. Ryann hopping up into Rylee's bed each night to read her little sister a bedtime story. Strangers in Florida who have become part of our family and love us so much...A friend who remembers to call or send a card, ‘just because.’
To you, reading this, still checking in on us…

Ministering to others, showing God

is as simple as loving them…

right where they are, no matter the faults or problems,

with no expectations.

But-we have to get our ‘self’ out of the way first.

Please pray for our family as we continue to learn to put Him first in our life,

and daily dedicate ourselves to serving and praising Him.

‘God whispers to us in our pleasures, speaks in our conscience,
but shouts in our pains; it is his megaphone to rouse a deaf world.’
- CS Lewis

Safe in His arms...

Kaymaen Shae

March 2nd through the 9th, 2006

We miss you and love you sweet baby girl.

Daddy, Momma, and your big sisters

Fitzpatrick Family

It is with a heavy heart I update the site today.

Rylee's little buddy Fiona passed away last night.

Please pray for the Fitzpatrick family and especially

Fiona's big sisters Katie and Maggie.

If you have time, please visit the family webpage

and leave them a message.

Thank you for keeping this sweet family in your

thoughts and prayers.

"For you created my inmost being;

you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.
My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth,
your eyes saw my unformed body.

All the days ordained for me were written in your book

before one of them came to be."

Psalm 139:13-16

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