Bloom and Grow

Although it hasn't felt much like spring in our neck of the woods, it's nice to know that change and growth is on its way.  I've been peaking out at my flower beds the last few weeks; my tulips are a bit confused and are waiting patiently for mother-nature to give them the green light to "grow" . . . grow girls, grow! They're begging to feel the warmth of the sun so that they may stretch their rising tips and bud out into their multicolored brilliance.

What I love about these perennials is that, despite frigid forecasted temperatures, these hardy little things rise from frozen ground and continue to grow and bloom, year after year.  They're always the first bit of color that signals a burst of life and new energy after a long stretch of winter cold; or in our case, a long stretch of spring cold.  I can always count on my tulips to bring color into our lives and remind me that things in life don't always have to be sunny in order to bloom.

Colleen and I are done with our blogging hibernation and have decided to continue documenting and sharing. It seems, much like the tulips, that we've hunkered down and are a bit slow to rise after the news of Lilly's forecasted second round of surgery.  We are all building up the strength and nourishment to push forward and be ready to power through the tough stuff, knowing full well that there are sunnier days ahead.  Since February, Colleen and Matt have been frozen in  the "Waiting Place", after being told that Lilly's original fusion failed.  Waiting on doctors' renderings, waiting on call-backs, waiting on schedules, waiting on the "phone to ring or the snow to snow or waiting around for a Yes or No."  Just a lot of waiting.  Seems hard to believe that Lilly is going to have to undergo another fusion; a more involved and intensive surgery that will include screws, wire, bone, and the presence of a rigid halo for at least three months.  For more information about Lilly's symptomatic atlantoaxial instability, go to: http://downsyndrome.about.com/od/medicalissuesinds/a/AAI_ro.htm

And although the forecast has been a bit cloudy and unsteady the last few months, Lilly continues to sprout, bloom, and stretch herself in other ways.  And just like Dr. Seuss, Colleen feels like the Waiting Place is "a most useless place" and has been moving forward and enjoying Lilly as she is in this very moment.

Since turning four, Lilly has tucked a few more memorable experiences under her ever-growing adventure-making belt.  Three beach trips, a star sighting, a sista/auntie visit, and quick hop up to Seattle Children's Hospital.  And . . . I'm fairly certain that Lilly and Colleen have logged enough time with doctors to bring both girls pretty damn close to receiving their honorary doctorates.  I know they're looking forward to graduating soon!!!  Whew!

Lilly and her family have been enjoying their beloved Gearheart.  Gobblin' up the goodness during spring on the Oregon coast.

Nothin' says lovin' like these two.  Cookies at 10:00am too early?  Not with Colleen as their mama!

Colleen snapped this shot of Bear patting his sister's back.  What a little lover boy!

Barrett has the same twinkle in his eye as his big sis.

Roscoe clan . . .  Matt, Colleen, Lilly and Barrett: true love!

Lilly was a bit star-struck when her favorite TV personality came to town.  Yes, THE Rachel Coleman from Signing Time came to town for a live performance.  Lilly saw her at a local high school on a Friday night and . . .

visited again with her in Portland on Saturday afternoon.  We LOVE Rachel!

Colleen's been packin' up the kiddos and enjoying a few sunny days the westside has recently offered.  Lilly was born in the beautiful town of Hood River, Oregon and it feels like home each time she returns.  This is the very same park that Colleen and Matt brought Lilly to for her first picnic at 7 days old.

Lilly and her dear friend Jill.  

Feelin' the breeze.

Lilly, Barrett, Lance and Courtney (Jill's children)



Big boy, boot-wearing Barrett



1, 2, 3 . . . go!!!  Lilly on her slide.



Cousin time 



She's getting so big.



Trip to Seattle for a second opinion.



Lovin' the bustle of the big city.



View from Auntie Tricia and Uncle Rett's Seattle condo.  Nice way to spend an evening with Lilly.



On May 17th, a team of specialists at Doernbecher Children's Hospital will be doing all that they can in order push Lilly through this rough patch o' stuff so that she may heal and grow.  In order to support my sister and show Lilly how inspirational she is, my dream was to have 1,000 miles logged in honor of Lilly before her second surgery.  Our total now sits at 720.56 miles. . . we've got a few miles to go, but we're closer than we've ever been!  With your help, I know we can push forward this next week and LOG IT FOR LIL'!  Please show your support for Lilly and move in honor of this little girl that wants nothing more than to run and jump and play like the rest of us.  

We love you Lilly.  May you bloom and grow.   

Thank you for your mileage!

Allison   43.81

Jill P.    65

Jill C.  32

Kate 10

Darin 20 

If you'd like to log miles for Lilly this week, please email me:   kdhvaughan@gmail.com 

1,000 miles, here we come!!! 

  

A Birthday Wish

Happy 4th birthday to my kindred spirit, my musical Maria, my junior Jackson Pollock, my ice cream compadre, my hardcore reader, my lovey-dovey dancin' doll, my sassy sprite, my dearest friend.  

Happy Birthday Lillian Elise

Lilly's 4th birthday party at Grandma's house

Lilly's 3rd birthday celebration 

Lilly on her 2nd birthday

Lilly and Kiki on her 1st birthday

Sing

Bright and graceful our daughter appeared

Whispering a new sound

An unfamiliar cadence

In a world of memorable songs

We released the melody of our dreams

Exhaled it through our hearts

And let it slip through our palms

To discover a new and perfect rhythm

Her song echoes in our hearts

In a pitch that hums sweetness and peace

We breathe in the notes of new hope

And dance to her powerful beat

This was a poem that was written by Colleen for Lilly's 1st birthday.  We come back to it every year and are reminded by how much Lilly has changed us all. . . for the better.  Lilly is one amazing little girl and we all strive to be the best versions of ourselves because we have her in our lives.  What a gift she has given us.

Speaking of gifts, more miles were gifted to and logged for Lilly this week... another 84.45 miles to be exact!  Our total now sits at 549.75 miles for Lil'!  Keep it up and start movin' for our Lilly Girl!


Allison 14.95
Marci  3
Darin  27
Kate 18
Colleen 10
Jill   12.5


I love you Lilly and I'm so happy you came to this world.  I wish you a happy number 4. . . this is the year for dancin', walkin', runnin' and lots more lovin'.

Lilly and Colleen at birthday breakfast - Pacific Way Cafe

Go With the Flow

March 21st is a big day of celebration.  We've officially entered spring - a time that embraces rebirth, renewal and regrowth.  3.21 marks a another reason for celebration . . . it's World Down Syndrome Day! This date represents 3 copies of the 21st chromosome, which gives people with Down syndrome a little somethin' extra. As my family and I like to say, the more the merrier!  This is yet another reason to celebrate our Lillian Elise Roscoe!!!  Please check out Kelly Hampton's site for a fantastically written piece about 3.21.  

Colleen and her family are at it again . . . moving full speed ahead into limbo land.  However, the Roscoe family doesn't allow moss to grow on rocks and they sure as heck don't allow delayed doctor renderings or the thought of another surgery to slow them down either.  So, somewhere between oblivion and an imaginary place like la-la land, they find themselves flowing along and pushing forward, together.  They hold on even tighter now and are ready to jump into the unknown, again.  It's been an interesting few weeks. . . doctor's visits, good news, bad news, a speech, celebrating, running and lots and lots of lovin'.  It's just part of the flow that Colleen has been accustomed to for a while now.  I've asked Colleen to give us a quick overview on her goings on.  So, one week ago last Thursday evening, she happened to write the family to inform us about the week's appointment with Lilly's neurosurgeon.  I thought we'd start there.  Oh, and by the way, thank you again for praying, meditating, signing, dancing, walking, and running with Lilly near to your heart.  She's loving every bit.

Hello family.  Matt and I wanted to update you all on Lillian Elise.  We had an appointment with her neurosurgeon yesterday morning, and he began our visit by saying Lilly's spinal cord is healing.  In Lil's most recent MRI, which was completed two weeks ago, he is unable to find much (if any) abnormality on her cord.  Awesome!  Lilly is still, as you know, moving similarly to the way she moved prior to surgery.  That is because her body has moved in this manner for more than two years.  So, we are going to focus her therapies and daily activity on this neuro/muscular issue.  No small feat, but we are feeling empowered and hopeful that Lilly will continue to make changes now that her cord is recovering.

Though we were given good news about her spinal cord, we were told that Lilly will still need to undergo a second C1/C2 fusion to stabilize her cervical spine.  The method of surgery has not yet been decided (I will speak with the neurosurgeon via phone tomorrow morning about the recommended approach), but we do know that Lilly will be in a "real" halo for this recovery.  We've been told that it is a very painful procedure, but that it must be done to insure a proper fusion.  I know there may be questions, so call or email if you'd like.  Hopefully we will all see each other soon. 
Off to squeeze Lilly and Barrett.  To heck with dinner and trying to clean a creatively chaotic house!

Love you all,
Colleen

P. S.  I did speak with Lilly's neurosurgeon by phone last Friday afternoon, and he is still in need of more time to discuss which approach to take with Lilly.  He sent Lilly's films to a neurosurgeon in Utah who has worked on kids her size using a method her current doctor has not preformed.  The neurosurgeon from Utah should have his opinion rendered soon.

Other than talking with Lillian's neurosurgeon, we are keeping busy making appearances at gala events and running about town (literally).  Last Saturday night Matt, Lilly, and I attended the ARC of Clark County's 75th Annual Diamond Jubilee Celebration.  I was asked to speak to the 300 celebration attendees to raise awareness about PRIDE for Kids, an ARC program, which has supported Lilly's early intervention/private therapy since she was two months old.  What a lovely evening. And . . . Matt's sister, Evie, and her husband, Colin, surprised me by attending the dinner and also securing the winning bid for Lillian's artwork.  Clearly, you cannot mess with my sista-in-law: she's a sneakily clever, out-bidding, art-buying, Lilly-lovin' auntie!  Love to you, Evie.  Nice to keep Lilly's art in the family.

Elbows, Colleen, elbows!



Oh, Uncle Colin!



The next morning, I dragged my over-tired be-hind out of bed and, once the coffee kicked in, slammed it into gear and drove myself into downtown Portland for the Shamrock Run. It was my first time running in the race, and it won't be my last. In true "Colleen style" I forgot my timing chip and didn't realize it until five minutes prior to the start. The announcer, whose voice hovered above thousands of runners, shouted that "Your timing chip should be around your ankle. Not on your wrist, not under your hat . . . ." How about "not on your freakin' living room rug?" Classic. I do like to leave a trail wherever I go, and the kids had something to remember me by while I was gone. As well, Lilly found the timing chip to be a perfect accessory to her Saturday morning pjs. Anyway, in a true "go with the flow style", I asked the gal next to me for the time as we passed through the starting gate: 8:06am. I tracked down a watch-wearing runner as I crossed the finish line: 8:52am. So, my not-so-scientific calculation had me at 5 miles in 46 minutes. That will do. Better than the 14 minute mile pace I used to clock for Ms. Hockey in 6th grade PE, right?

In the last couple weeks, we've all logged more miles for Lil'. . . 144.3 miles to be exact.

  

The Joy of Running Together is "To run with so many people you lose your sense of how well or poorly you run. You're just part of the flow, the sound of footsteps and breathing. You're continuously aware you're really not competing with anyone. You're sharing something.''  Thank you for sharing your steps with Lilly and dedicating your movement to a little girl that wants more than anything to be "part of the flow" and move along side us.  Keep up the great work. . . she'll be out there to join us before we know it. 

I saw this mama/daughter duo and thought of Colleen and Lil'.

So, a grand total of 465.3 miles have been logged dedicated and logged for Lilly!  Let's shoot for 1,000 before her next surgery. . . we're thinking that April or May will be the next scheduled date.  Pass this idea along to family and friends. . . our family has been so encouraged by your support and Lilly is feelin' the love. 

Darin: 59 miles

Kate:  20

Jill:  23

Allison:  28.3

Colleen: 14

144.3 new miles logged for Lil'.  

Thank you!

These Are a Few of My Favorite Things

Time with my family fills my sole, my heart, and my belly.  Henry and I had the chance to fly into Portland and fill up on an extra dose of the good-stuff.  We were able to pack all of our favorites into this one trip (minus a trip to the Oregon Zoo and perhaps a day trip to the Oregon Coast - guess that will have to wait until next time).  My favorites, in particular order: Lillian Elise (my Lilly Girl), the sun, NW 23rd, Whole Foods, running, Paper Source, lattes, naps and curry.  Oh, how I love my time with these people that I get to call family.

Lillian, Colleen and my mom, Bobbie 

Despite the fact that we've been told that Lilly may need a second surgery to correct the ongoing instability in the C1-C2 region of her neck, I was impressed by Lilly's ability to want to get-up-and-go. She kicks arse on her walker and I'm quite sure, that if given the opportunity, Lilly would walk hand-in-hand with her mama for hours.  That little girl loves to move and although her gate is not typical and she struggles to balance without aid, it's not stopping her or slowing her down one bit.  The sun was shining and Lilly was all for heading into NW Portland to get her move-on.  

We found a gem of place just a block off 23rd.  I've been a fan of this Portland neighborhood since high school but sadly have to admit that this was my first experience at Elephant's Delicatessen.  A little slice of heaven in my book.  It was like walking into an authentic Boulangerie.  Great french bread, baked goods, espresso and a lunch menu that knocked-our-socks-off!

My parents, Colleen, and I managed three kids and hands full of sandwiches, salads, coffee and bread and made our way outside to the patio seating.  A sunny, warm day (40s) in February is a treat in the NW, so we took full advantage of the gift.

I think my favorite part of the visit was time spent at home cuddled up together.  Lazy mornings with rosy cheeked kiddos, pajamaed-up 'til noon.  It doesn't get much better than that.    

Homemade sauces, french bread, shrimp creole and wine. . . all made better while visiting around the dinner table at night.  Yes, these are a few of my favorite things.



Prior to my visit to the westside, Matt and Colleen took the kids (along with their beloved sister and brother-in-law) to the Great Wolf Lodge.  The hour and a half trek north was scheduled after Lilly's surgery to celebrate her recovery.  Even after the news of a possible second attempt at fusing, Matt and Colleen decided to celebrate Lilly kicking tail with her first surgery and recovery thus far - take that failed fusion!  Oh, and celebrate they did, as you can see:

Lillian not too sure what to think; Bear is a bit unsure himself.



Um, that didn't take long, Lil'!

Bear Bear lovin' it, too!



Poolside cousie time with Liam!

Lilly even found time to create art for the ARC of Clark County.  Lil's masterpiece will be auctioned off at the ARC's 75th Jubilee celebration in March.  Thanks, Ryan, for letting Lilly get her art on!


Aerial view of Lillian's work of art.



What precision!




Lilly has the touch!



Lillian Pollock, is that you?

The artist!

Along with swimming and loving and painting last week, Lilly had an appointment on Friday, at OHSU, where her MRI and CAT scan were performed.  Though it is always stressful for Matt and Colleen to put Lilly through a "you're going under" medical procedure, Friday's testing turned out to be a cinch.  Colleen often refers to perspective. Yeah, having your baby placed into deep sedation for two hours is nothing when you've kissed your love goodbye before heading into four hours of surgery that would permanently alter her tiny body. Perspective=gratitude for Colleen, at least it did on Friday. When the three reunited after the MRI/CAT sedation, Lilly boisterously requested juice and crackers and was able to smile and move and tease. In fact, while Matt held her in the elevator on their way to the car she looked at the marbled flooring and said, "Look, a shark."  Um, I'll have what she had; I doubt Lilly remembered much of Friday morning. Thankfulness for the gift of experience and perspective were present last Friday, along with a a few laughs.  Matt and Colleen will speak with the neurosurgeon regarding the imaging results in two weeks.  Cue the Jeopardy music . . . let the waiting continue.

I've returned home refreshed and renewed.  Lilly continues to inspire me to be a better daughter, sister, and friend.  Somehow, she's mastered these three roles at the ripe young age of "almost 4."  She and I are sole-sisters and, because of her, I've pushed my shy self to get out there, help others, and make a difference.  In honor of Lilly, I've met with pediatric therapists, volunteers, and parents with the hope of spreading the word about the Special Olympics, in particular, the Young Athletes Program.  Last Tuesday morning, with the help of three great employees of Idaho Special Olympics, I welcomed the Young Athletes program to North Idaho College.  This program is growing and being embraced in a big way. Lilly's spirit has moved me to give back and increase the awareness and inclusion of children of all abilities.  I had the help of over 20 volunteers, and over 20 Young Athletes turned-it-out and are now on their way to becoming Olympians.  Lilly, look what you've inspired me to do. . . .

These kits are the tools we use with our Young Athletes.  All equipment is donated by Special Olympics and the Mattel Children's Foundation.

Many favorites were enjoyed and lots of Lilly lovin' was had during our visit.  As well, many of you have been inspired by Lilly and you've been getting up to move in honor of this amazing little girl.  In the past two weeks, another 183 miles have been logged for Lilly.  Movement by y'all included running, walking, swimming and biking.  We're well on our way to logging 1,000 miles for Lilly!  Let's keep up the great work and please don't forget to email or FB me to share your mileage.  Every step counts and I thank you all so much for keeping our Lilly girl in your thoughts and prayers.  I think it's working.  I know it is.   

Lilly thanks you too!

This is a tally for the last two weeks:

Jill:   12

Shannon:  31 (8 miles running, 3 miles swimming, 20 miles biking)

Colleen:  7

Meredith:  67

Darin:  60

Kate:  6

Angi:  3 indoor soccer games per week

New grand total for Loggin' it for Lilly:  321