"For you formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them." - Psalm 139:13-16
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3.11.2009

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

3.02.2009

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

2.18.2009

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

2.07.2009

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



1.21.2009


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.'
"For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee, for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book they were all written, the days that were ordained for me, when as yet there was not one of them."

Psalm 139:13-16