Inspiring!

Okay, you all remember me mentioning the Ladybug Club in Jacksonville, Florida.

They are still working on their website, but it is up and running!

Wanted to share the site with everyone.
We are so proud of our friends and family whose lives have been touched through Rylee. Not only do they love us, pray for us, and encourage us-

but they are stepping out and helping other families in similar situations.

Thanks Angie and Hannah-you crazy girls! We love you!

Rylee's Ryder (middle) with huge storage basket for all her things!

Now, to all our special needs families. Everyone asks us, "Where did you get Rylee's stroller?"

Let me introduce you to our DreamerDesign family in Washington. After a whole lot of hauling, aggravation, annoyance, and loose screws (we all know I have plenty of those already! grin) I was sick of Rylee's mobility being limited to a KidKart. We need a product that meets all of Rylee's needs and fits into our family's lifestyle. Enter DreamerDesign-they stopped, listened, and cared-and in the process...of course...fell in love with Rylee. They adapted a stroller to meet Rylee's needs and continue to strive towards making products that enable families to get out and enjoy life with their child. The bad news, she has now outgrown her RyleeRyder! The good news? Janie, Greg, Matt, Martin and the entire office are currently slaving away to adapt a bigger stroller for Rylee-we have to have our jogging stroller for Disney of course! Look, Rylee will be meeting royalty! She has to look great! giggle We are getting ready to send out Rylee's old stroller to her buddy, Fiona-and hope they enjoy it as much as we have.

In the meantime, we are also preparing to order a wheelchair too for Rylee's needs. Pray that we will have wisdom-Medicaid only allows for one every five years, so it has to really adjust if she'll have it until she is nine years old!-and be able to find one before we go to Disney. We like having two mobility products-then we always have choices depending on what we'll be doing that day. Pray that God will send us another wonderful company as compassionate as DreamerDesign to work with...they have set the bar high!

(DreamerDesign link to the left.)

Please remember to pray for two families we've recently come in contact with:Emma Vannatter from WV. She recently had a bone marrow transplant and is now facing all the side affects that come with this aggressive treatment. Aaron met her Daddy while out of town working.
Riley Turner from FL. Pray the specialists have wisdom as they care for her.
Both families have shown impressive strength and God granted grace as they face many difficult decisions for their child. Please remember them in your prayers.
We are all well and excited to see Spring here, Summer approaching! See you all soon! Can't wait to show you all our Disney pictures and tell you how much fun we had.

Joy

"There is a road from the eyes to the heart that does not go through the intellect."

--Leonardo da Vinci--

My hot cocoa is steaming beside me. The sun slowly spreading its fingers through the night sky. I just finished my morning devotions focusing on joy.

I used to wonder why the Bible coupled night with pain and grief, morning with joy and relief.

Why do loved ones slip away under the cover of darkness?

How does morning fill us with hope and expectancy?

Then I lived long days in the night. Waiting, hoping, praying. Trying to believe. The shadows stretched so long over the hospital room where Rylee lay unmoving. I remember sitting with Rylee that night, 4th of July fireworks lighting the sky, illuminating her still face, finally free from the feeding tube and ventilator. Two years later as I held Kaymaen in my arms, I prayed for the morning to come-hoping for one more day with my precious little girl. Those shadows still grip my heart from time to time. Tangible enough, I feel as though I should be able to fling them off my spiritual being. It's these times that I'm so thankful for God's reminding presence.

Joy comes in the morning.

How could I ever appreciate the true meaning of joy without knowing the full measure of despair? Shadows can only be made with the presence of Light. As He refines us, grows us up more in Him, enlarges our hearts and expands our minds...it hurts.

Joy comes in the morning.

Yet, we still have a reason for the hope that lies within us. The night is long. Winters in our life seem to stretch forever-cold and bitter. But, right around the corner is the promise...

Joy comes in the morning.

If we can just wait, He will renew our strength-allow us to grow stronger and taller in our belief in His plans. How grateful I am that while I may be stilled, dormant in my spirit...He is always looking forward to the spring...new growth, the excitement of possiblities, unexpected surprises,

and the beauty of joy filled days.

Rylee's Rally

Well, our first annual Rylee's Rally has come and gone...and we are already looking forward to next year! We had 57 vendors, and just shy of 500 people come through the doors Saturday.
It was so exciting, watching all the vendors set up-Make A Wish, local specialty clinics and specialists, Shriners and Cabell Huntington Hospital pediatric services, local therapists, and many others. Amazing that so many would come out, spend their Saturday helping families of special needs children. But, nothing prepared us for all the families that attended! It was so overwhelming to meet everyone. I didn't know if I should laugh or cry for all my excitement.
All the families were able to network with area services and agencies-getting the care they need and deserve for their child. We had families from the local area and also Columbus, Louisville, Inez, Pt. Pleasant, and even as far away as New York. Everyone-local media outlets, vendors, and the families-ensured that not only did we have a great turn out, but that our time was productive and the families learned alot about available resources. There's no way we could have accomplished everything without each person's help.
One mommy grabbed me as she was leaving and thanked me, big tears in her eyes. Her daughter was eight and they had no idea these services were in place.
I scrambled around each booth, introducing myself and thanking vendors, but also to grab information for our own family. When I came home Saturday night I dumped everything out on the living room floor and just started crying. All I could think of was-wow, this is what all the families went home with! What would our life have been like if we'd had all this when Rylee first came home? How awesome to think that a parent went home with a lighter heart, knowing that Monday morning they could call someone and get help!
To everyone involved-thankyou for giving your time and talents. Also to all our prayer warriors-the weather was perfect and the turn out beyond expectations. Guess that is what the Lord means when He says He wants to give us "exceeding abundant."
We already have free food promised for next year and will be working on procuring a bigger venue (for free?) next year. Look out Civic Center...here we come!

Rylee is doing great. She and Ryann are anxious to start our Disney trip. Ryann crawls up in Rylee's bed and speaks "handicap" to her, gabbing in their language about the trip. Ryann's wonderful kindergarten teacher has also unknowingly taught Ryann a new phrase. When waiting on Rylee to fill her diaper the other night, Ryann looked at Rylee and said, "Come on Rylee, before I retire." Very amusing coming out of a five year old's mouth. Rylee is responding more during her therapies-grousing and grumping during, and charming us with grins when she knows it is all over. She is still trying to cut a front tooth which we can see, mocking us right under her gums. We are getting ready to adjust her wheelchair again since she is so long!
Being there Saturday and meeting those sweet families and then holding some of the little ones just reminded me again of how God has blessed us and how far Rylee has come.

We'll keep you posted, and as always, thankful for good friends and family!

Media Release

To all of Rylee's groupies who have missed the news this week...

or don't live nearby-

Here's the aired segment, just click the link and chose the option "play video."

http://www.wowktv.com/story.cfm?func=viewstory&storyid=35826

http://www.wsaz.com/news/headlines/16622076.html#

If you have the time, be sure to drop Gina Long (WOWK), Carrie Cline (WSAZ),

and Laura Wilcox (Herald-Dispatch)

a note letting them know what you think of the segment and article.

We are very appreciative of their help in getting the word out

about the resource/information fair.

Currently we are at 50 vendors...and counting!

And seriously, how cute does Rylee look in that outfit!?

Update on Thursday, March 13th

First - to everyone who has called and emailed to be involved-THANKYOU!

While we are worn out, the overwhelming feeling is excitement. It's so awesome to think that we are helping families get the same support system in place that we have.

We've even had folks from other parts of the state, and OTHER states, call because they want to do this in their neck of the woods!

Please pray we have a great day, there will be many families helped and encouraged, and that lives are changed.

For those of you who have followed Rylee's story all along...

Remember when I said, "Jesus used a little boy with a loaf of bread and fishes to feed thousands...whose to say He can't use our little girl?"

Seems very fitting, especially this weekend.

Disney...here we come!

I finally broke over and took Ryann and her buddy to see "Hannah Montana."

Times I was begged...countless.

The girls behavior...faultless.

Sneaking healthy snacks into the theatre....effortless.

Watching the girls during their first 3D movie...priceless...and hilarious!

As many of you already know-smack in the middle of Rylee's PICU stay last month, we got a call from Disney. Aaron almost hung up on the lady, thinking they were selling timeshares! Still not completely sure how we were chosen, but the DreamTeam sent us seven day park hopper passes. Their timing could not have been better...Rylee was so very sick...to have something to look forward to was such a blessing. In true Disney fashion, they went above and beyond to help us get down there. When Aaron explained Rylee was in PICU they overnighted a gorgeous care package for the girls-nightgowns, Minnie's (Rylee's nurses loved hers!), pillows, activity packs, and Ryann's favorite (drum roll please) autographed photos of the princesses. Ryann started screaming at Rylee, "Look Rylee, they know our names and can spell them!" Thankfully the dust has settled, and Rylee is doing amazingly well, praise the Lord. But, Rylee's intensive care stay just reminded us again of how fragile life is-how precious our time with her is. I started searching deals on lodging, trying to figure out how we could get down there quick, while Rylee is well. I called Disney reservations, just to get an idea of costs. During the conversation I mentioned why we were coming and what type of accommodations we would need for Rylee. Once again, the Disney folks bent over backwards to take care of us (Thank you Ms. Etta!). Not only did we get a great deal, we'll have space for all of Rylee's equipment. Aaron slipped and told Ryann, who then took it upon herself to give Rylee all the details! (see below photos)
Rylee was sick from the plane ride during our Make A Wish trip. While we still had a wonderful time, most of our trip was spent worrying about the flight back. This time we are driving and have plenty of days to enjoy all the parks at our leisure. We also left ourselves two bonus days to enjoy the pool at the resort (and to give Rylee a break) and to see our friends at Give Kids the World. And of course, we cannot wait to show Rylee off to the VIP Lounge at the Magic Kingdom (look out Alexis and Matt, we are on our way!) We are thrilled to have another opportunity for a special, memory making vacation with our girls.

Ryann telling Rylee about our Disney trip (she does this every night!).

The girls are wearing their goodies from the DreamTeam.

One more kiss good night.

Looks like Rylee is ready to follow in her sister's footsteps. Locks of Love by the summer?

Final preparations are being made for "Rylee's Rally", held this Saturday the 15th at Marshall University's Student Center (10am-2pm). While it was slow going at first, the community has really become excited about the event. We have around thirty vendors now, but expect more this week. Many area families have asked about the day and plan to attend with their children. Rylee's PICU doc is planning to attend as a clown and balloon artist along with face painting, Mrs. West Virginia (thanks Gretchen!), and some of the MU football team. I will have a crazy week this week. Please pray things go smoothly and we get everything accomplished by Friday night. This is such a great opportunity for everyone. The vendors get to actually meet the children they help. The families get more information and access to resources they need. And we get to make sure Rylee makes a difference. We've been so blessed, it's great to have the opportunity to turn around and help other families like our own. I'd really like to take sissy with me, but it will depend on the weather. Pray for that too. Many of the families have kids with a weak immune system, and won't be able to come out. We want a balmy spring day! I'm a bit nervous to take Rylee out, but would really like everyone to meet her and better understand why we thought of "Rylee's Rally." A family from the northeastern part of the state would also like us to have the fair in their neck of the woods...I know I'll sleep someday, but I guess I'd rather wear out than rust out, right?! It's a good thing I'm probably slightly (no comments from the peanut gallery! grin) ADHD.
Another note and I'll add photos, feed Miss Rylee, and go to bed. I awoke Wednesday morning to what I thought was Rylee fussing for me. I was a bit surprised at how loud and consistent she was, so quickly got up and started into her room. Ryann was sitting in bed with Rylee, brushing her hair and talking softly. What I thought was just Rylee, was actually the two of them making the same noises. Ryann looked up and said, "Don't worry momma, I speak 'handicap' now. Me and sissy have been chattin' it up." She then snorted at Rylee, who returned her piggy noise, and told me, "Yep, Rylee's hungry." Once again my girls remind me of how blessed I am and that I have much to be thankful for and proud of. God has certainly used the girls to grow us up more in Him, enlarging our minds and hearts along the way.
That's all for now. Let me know if you'd like to volunteer on Saturday. And, please plan to attend, even if you don't have a special needs child. It will be great for area families to see all the support-not everyone is as spoiled with attention as we are! I'll be sure to post our success story this weekend.
Much love and thanks for always remembering us-in your thoughts, your hearts, and your prayers.

Newspaper Article

Direct Link:http://www.herald-dispatch.com/homepage/x112305932
Rylee's Rally to help children with special needs
Mar 04, 2008 @ 01:04 PM
By LAURA WILCOX
Herald-Dispatch.com
HUNTINGTON — Deborah Davis wants area families to know that help exists for children with special needs, from learning programs and medical equipment to financial assistance. That’s why she’s encouraging them to attend “Rylee’s Rally” on Saturday, March 15, at Marshall University, where at least 30 vendors will provide families with free information about various programs and opportunities. Davis said space remains for anyone interested in becoming a vendor. Davis, of Barboursville, is the mother of 3-year-old Rylee Davis, who has a rare, life-threatening metabolic disorder known as nonketotic hyperglycinemia. Davis said the rally is named after Rylee, but will benefit children with a wide range of needs. Davis said she remembers feeling overwhelmed by Rylee’s diagnosis a few years ago, but said a one-stop resource fair will provide other families with abundant information. “This is an opportunity not only to make sure Rylee makes a difference, but to make sure there are no other families going home feeling overwhelmed to take care of their child. Knowledge really is power,” Davis said.The event will provide families with a variety of financial resources, specialists, medical equipment providers and more. For vendors, Davis said it’s not only an advertisement but a way to connect with the people they serve. Huntington mothers Jessie Slash and Shellie Mellert also helped organize the event. Slash has 6- and 12-year-old sons with special health care needs. She said all of the mothers know how difficult it can be to find help. “I know the challenges we faced, my husband and I, trying to find different resources for our kids to be a part of the community,” Slash said. “I want my kids to be kids. I want them to be part of a baseball team and to be around friends. So we’ve found recreational activities that are specifically for children with special needs.”That’s just some of the information that can be obtained from the fair, she said. “We want families to be aware that there are available resources, and they’re definitely not alone. This resource fair gives families an opportunity to come together with a variety of organizations,” Slash said.Mellert has a 17-year-old daughter who requires 24-hour care. Mellert remembers when she was very young and the family had a hard time finding helpful programs. “There’s so much more out there that I didn’t even know about,” she said. “One of the things we wanted to do was to put all these resources in one location so families can basically shop for what they need.”
The free event is scheduled to take place at the Don Morris Room in the MU Memorial Student Center from 10 a.m. to 2 p.m. Saturday, March 15.
www.musom.marshall.edu/fsn/docc/rylee.asp

Never Forgotten

In memory of our Kaymaen Shae March 2nd thru March 9th, 2006

In two years, we've discovered that time does not heal. Time only allows God to teach you how to deal with your loss. My heart still skips a beat when I see a mom at a restaurant, church, the shopping mall-cradling her small child. I smile softly, making eye contact with the mother, not daring to really look inside the small pink blanket. While I'm blessed and honored to have the opportunity to help families in NICU and PICU...it takes my breath to see that tiny baby and all the monitors and medical equipment. The smells and sounds immediately take me back to our hospital stays.
I still don't understand why we couldn't keep Kaymaen, but I know we made the right decision to let her pass away here at home, peacefully. I know in my heart, that even though I knew she had this devastating disorder, I wanted her desperately, wholeheartedly. Didn't care that we would have two special needs children. Didn't care that she would depend totally on me for all her needs. All that mattered was she was ours. She had Rylee and Ryann's chubby little chin and cheeks, her Daddy's long tapered fingers.
In the middle of the night, while sitting quietly with Rylee, listening to her breathe - I recall that week with Kaymaen. How I felt holding her. How tiny her nine and a half body felt compared to Rylee and Ryann. I think of how Ryann was so excited and thrilled to have "Bob Hallelujah" (as she named her during the pregnancy) home, and how she wanted to hold her all the time. Taking pictures of the girls together, how big RyleeBug looked compared to her new little sister.
But I also remember the peacefulness of having her here. I remember when she took her last breathe in my arms. I think of our girls' specialist, Dr. Jones coming to the house at 2am to take care of everything. I remember our friend, Ernie Hall, whose family owns the funeral home-standing here in our home, tears running down his face as he tried to encourage us, yet all the while he was thinking of his three little girls-the same age as our own. I remember the funeral service. The memorial service that Sunday-the outpouring of support and love from our friends and family. A feeling of relief that she was safe in Heaven, not in pain never to know fully the struggle and effects of NKH.
For me, the important thing is I remember. All of it. I was so afraid I'd forget something important-the feel of her lying in my arms, the smell of Dreft and Johnsons & Johnsons. For me, healing has come from the remembrance. Healing has come as I hold Rylee and care for her needs. Healing comes when Ryann puts her tiny hand in mine and says, "Mom I was just thinking of Kaymaen. I bet she's eating ice cream all the time and lives in a castle just like Cinderella's."
To all our friends, family, church family, strangers who have become part of our heart through this site...Thank you, for praying, for caring, for continuing to check in on us.
I cannot honestly say that my heart will never not ache for my little one. But I can say that God has really given us a "peace that passes all understanding." And we now live our life honoring Him and honoring the life of our girls-trying to make a difference.
Please pray for us this week as we go about our day, taking care of the mundane ordinary things in life-tucking in girls, playing dress up, giving baths, and throwing spa parties-things which now seem extraordinary. Pray that we will never grow ungrateful, hard hearted. Pray that God grows us up more in Him because of our life circumstances, not in spite of. Pray as we teach Ryann and care for Rylee. Pray God will continue to put the right people in our lives, at just the right time. Pray that He will use us in some way to impact others.
Thank you for remembering Kaymaen with us.
We love you sweet baby and miss you so much...but know we will see you again.
God's Masterpiece
"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