(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.
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.
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!
