"To live is the rarest thing in the world. Most people just exist." - Oscar Wilde

Halloween 2015 as Where's Waldo

Rylee”Bug” Erin Davis, 11 year old daughter of Aaron and Deborah Davis and little sister to Ryann, passed away in her parent’s arms on Thursday, December 17th. Rylee was a much loved daughter, sister, and friend who impacted the lives of everyone who met her.
Rylee taught us how to love unconditionally and unreservedly, holding nothing back. She showed us how to live life to the fullest, in the moment-with no regrets and no fear. Each day with her was a joyful lesson as she amazed each of us and defied all odds with her sheer tenacity and sweet spirit.
We will never be able to thank our church family, friends, or the community enough for the way they loved Rylee-as a young lady with bright blue eyes, big curly hair and the ability to bring out the best in those who took the time to know her.

To the circle of people who loved on her regularly we are so grateful for the love and gentleness you showed to her-MawMaw Vivian, Gigi, Granny Franny, Fric & Frac, ClaraBell, Troy Arron and her entire care team-with special thanks to Auntie Charlotte, Dr. Pippa, and Nurse JudyJudy and Nurse Becky. It is impossible to mention each person by name but our family will never forget the folks who fell in love with our sweet girlie: our friends who raised their children to see Rylee as herself not a diagnosis, her entire team throughout the years who gave her care grounded in humor and hope, our entire church family at Antioch, and of course all of her “RyleeBug Groupies” who span states, countries, and continents.

What an awe inspiring thing to be able to say, “Our girl lived well and she was so loved.”

Hall’s Funeral Home is handling arrangements. A service to honor her life well lived will be held Monday, December 21st, 2015 at 2pm in her home church Antioch Missionary Baptist Church on Little Fudge Creek in Ona, WV with graveside service to follow at Spring Hill Cemetery. If you’d like, please wear a spot of red in honor of Rylee.
We hope the services will give everyone the ability to remember Rylee’s impact and leave each person with the impression of peace and joy she brought to us.

In lieu of flowers, we ask that folks help us honor Rylee as we continue to minister to families like our own.
Checks should be made payable to “CIA (Compassion in Action) Project” and mailed to:
First Sentry Bank
PO Box 790
Barboursville, WV 25504
ATTN: Fran Howard

While we will always miss our sweet girl we revel in the thought that she is running with her sissy and Jesus in Heaven. Psalm 139:13-16

We hope you will leave us comments on the blog about the impact Rylee made to your life.  Comments and notes to our family may also be left at:
http://www.timeformemory.com/fh_obituary.cfm?obitid=43858&fhid=16&locationid=16

For those that know, love, and prayed for Rylee-
and even those we may never meet personally-
please feel free to share her blog URL www.ryleebuggroupies.blogspot.com
and the above photo on your social media with the hastags:
#red4rylee #RyleeBugGroupies #Psalm139:13-16
The more folks who visit her blog the more her blog map gets covered with red...it's a fun and great way for her big sister Ryann (and us) to see her sister's impact.

For such a time as this

https://youtu.be/kUeTGVF9TJk

I'll write in more detail when I have a moment to collect my weary thoughts.  Rylee is dealing with her annual spring allergy/seizure cycle and we are all exhausted.  In the midst of it all WVDHHR submitted their 5 year application proposal for the I/DD Waiver Program.  This program is what allows West Virginia residents with intellectual and developemental disabilities to live in their communities where they are known by name and valued.
The current proposed cuts will decrease supports and services by half in most cases. 
I had an opportunity to speak publicly on the Capitol steps about what this means to those of us accessing the services for a loved one.  I've been proud to be involved in several advocacy and education events in our state since having Rylee.  I've never been more honored and proud to stand side by side with self advocates and other parents as we fight to affect positive policy change for so many throughout our state.

If you youtube search "Title XIX waiver" you'll find all the speeches from the day.  I hope you'll take time to watch not just my speech but all of them.

Miracle in the Moment

I've no idea what family night looks like in other homes - but in ours, it generally begins with cooking together seasoned with laughter.
(Special thanks to my friend Sarah for capturing our crazy!)

Love our evenings at home together.  We may not have it all together, but when we are together it seems like we have it all.

Sometimes you never know the true value of a moment until it's a memory. 

The gift of Contentment

Like everyone else, we are right in the midst of the holiday season. 
Aaron outdid himself again this year with his deep fried turkey on Thanksgiving day and we enjoyed unhurried visits from friends and family.  The girls had the week off from school, Aaron and I both had a few days off work, and we all throughly enjoyed relaxing together.

Last week we spent a few evenings putting up the Christmas decorations while trying to find the best Pandora holiday music channel.  I rounded off the weekend by getting distracted, leaving a faucet running, and flooding our upstairs bathroom.  Thankfully my husband laid our tile correctly and we discovered happily my grout work wasn't too shabby, which equates to no permanent damage.  I am however up past midnight with my snuggle bug Rylee...washing all the wet towels and laundry from the debacle.  In between laundry loads I'm sitting here under a warm blanket, steaming Irish tea in hand admiring the Christmas lights.   I will admit to late night Netflix binges of any BBC programming.  Often the allure of a colorful pie chart has me doing family budgets on my Mint app while listening for Rylee's slow, clear breathing.  Or you'll find me curled up with yet another five pound book that I will devour in the course of one weekend up with Rylee.  But, I'm also just as happy to sit quietly thinking.

In the midst of this holiday season I am overwhelmingly grateful for all the blessings we've been given, especially this year.  After squirreling away money for several years, Aaron and I had the opportunity to do our second favorite thing together - traveling.  We spent ten days together laughing, getting into hilarious predicaments, and being thoroughly content wherever we went.  As I'm sitting here looking at these pictures and typing these words, I realize the previous sentence also describes every day of our last fifteen years of married life.  Granted the scenery, lighting, and wind in Ireland make the photos turn out a bit better...but even with the dishes stacked, a flooded bathroom, and piles of laundry it's rare to find either one of us without a goofy grin. 

How grateful I am to be married to my best friend, partner in crime, and father of our sweet girls.

This year Ryann discovered a passion for cross country running.  It's been a joy to watch her fearlessly jump into something new with little reservations.  She really enjoyed pushing herself to do better each time and we are so proud of her and the discipline it took to run several miles each day.  I also had the opportunity to take her to Washington DC with me over the summer when I attended the annual NACDD Conference.  A good friend and her daughter went with us - and we had a great time.  They took in the sights (and the summer heat) during the day, and when my meetings were over we had a few adventures on the subway, Rita's Ice in Chinatown, and just enjoyed making memories together.  Ryann continues to be a constant source of hilarity in our home - the frankness of her momma combined with the dry humor of her daddy ensure it's never boring around here.  She continues to monitor Rylee's clothing choices and makes sure Rylee has access to all the "cool music" the "kids these days" are listening to.

On a health level, Rylee has had an unusually rough year.  Folks forget that while she has a disability, she still experiences the same things a "typical" child her age goes through.  Ten year molars have been rough, along with other issues - but overall, we are still extremely grateful to say we've been able to treat all issues at home with the guidance of her phenomenal medical team.  There is absolutely no way to properly express enough how thankful we are for the folks God has put in our life because of Rylee.  She continues to grow in length, so long and lanky like her big sister. 
What a gift she has been in our life; teaching us daily to slow down, find joy in simple occurrences, and celebrate what others consider mundane. 
What a privilege to raise both of these amazing young ladies together with the help of our friends and family who support us, encourage us, and love us in ridiculously bold ways. 


If a Taylor Swift song and YouTube had a baby, it would look like these leggings. 
Thanks Aunt Rebecka for keeping her swanky!

While incredibly thankful, grateful for the way God continues to bless us - we also frequently realize, take note of the fact that a deep seated contentment has enveloped our home. 

Thankfulness seems temporary, an in the moment realization of gratitude. 

Contentment is the firm acknowledgement and satisfaction of reaching capacity.

Contentment should not be confused with complacency.  In fact, in our home, this contentment makes us desire to continue to serve others, love others as completely as we've been loved. 

Contentment makes you unafraid to open your heart. 

Contentment makes you hungry to follow your passion, that idea or goal that makes your heart beat faster and awakens you in the middle of the night. 

Contentment makes you confident enough to try, fail, dust yourself off, and try again.

Contentment makes you realize you've reached your capacity - in love, in joy, in understanding, in thankfulness - in such a manner...that it overflows to a point that you want, you need, to share it with others.

Imagine if every family like our own felt as loved and supported as we've been.

We have some ideas of where God is leading us as the next year approaches. 

Anxious to continue to grow and learn.  Incredibly grateful and content in the thought that He has plans for our little family.

Jeremiah 17:7-8

 

Halloween 2014

Another successful Halloween is in the books! 
Ryann decided she was old enough to go candy begging with her friends.  She spent her first Halloween trick-or-treating without ol' Dad and Mom.  She had great fun with her school buddies and hauled in a stash of sugar large enough to last her through...well, let's be honest, no matter the amount...if it makes it to the end of the year we all will be in shock.

Aaron started early this year making Rylee's costume and then we finished decorating it in a bit of a frenzy right before treating time.  Always the handy man, he never ceases to amaze, coming up with costumes dreamed up - but he turns into a reality.

So, without further ado,

I give you

our Nerd and The Claw Machine.

Disclaimer: No child was harmed in the making or wearing of this costume.

Astonishing what cardboard, spray paint, duct tape, and imagination can accomplish!

2013

2012 Ghost & Elliott and ET

2013 Ballerina Bandit and Chicken Soup in a Pot (featuring Daddy as the Swedish Chef)