A wee bit of magic

This is a picture of Lilly on her first Halloween.  I come back to this photo every fall.  This photo, right here, is the essence of the season. . . it's magic.  Oh my, how this photo melts me.  She's like an uber-gooey, candy-coated nugget of goodness.  I'm talkin' as sweet as they come.  Packaged up with a bit of whimsy and yummy enough to gobble right up! I can't get enough of this scrumptious little pumpkin.   

It's amazing to look back at this photo and see who this little wee-one has become.  Lilly is now much bigger and a much more sassy version of the little pumpkin you see in the picture.  She's still got it though - a magical ability to cast lovey-dovey spells on everyone she meets.

   Lilly's got the 'Bewitched' nose wiggle down to a tee. . . see, she's full of  magic!

Colleen recently told me that this fall seems even sweeter than usual.  Knowing that Lilly's surgery is soon approaching, she and her little family are more present in this moment where things are good and carefree.  Colleen and Matt decided hold off on Lilly's therapy for the two weeks leading up to surgery to steer clear of possible bugs and to make sure she's well rested.  With a bit more time on their hands . . .

They've been able to dive into their garden's big tidy up.  

 Lil' playing peek-a-boo in a pile of leaves

They've hiked near Mt. St. Helens.

Lilly and Matt scoping out the trail

Colleen and Barrett crossing a tree over water - yikes!

And crafted a few festive projects.

A sneak peek into what the kiddos will be for Halloween this year . . . Colleen, you're too stinkin' crafty!

This past week, Colleen and Matt also fit in a visit with another neurosurgeon.  Lilly and her MRI films/x-rays have now been seen by four neurosurgeons . . . three in Oregon and one in Iowa!  Each surgeon has rendered the same opinion about the fusion and the light for surgery is as green as go!  Opinions still differ on whether or not they'll use her rib bone to fuse to the C1-C2 vertebrae or if they'll use donor bone.  One nurse also said that Lilly may not need to get a "boy cut" after all.  All will be resolved in just a few short days. 

Matt and Colleen have received large support from family and friends.  Colleen's sisters-in-law have created a calendar for meals and childcare during the months following the surgery.  Matt will be able to take close to two weeks off work and Darin, Henry and I are heading over to celebrate the Thanksgiving holiday with the family.  If any of you are interested in lending a helping hand, please feel free to contact me:  kdhvaughan@gmail.com

Lilly, thanks for your magical ways and for melting my heart the way you do.  And thank you Colleen and Matt for bringing Lilly into this world and taking such good care of her.  I love you all.

The Knot

Colleen attended her weekly therapy session yesterday.  Although the sessions are tough to work through, she keeps going back.  Week after week she goes because she wants to better herself.  Each counsel is never without a massive amount of sweat, a few tucked away tears and an abundance of deep sole searching and reflection.  Her therapist is skilled; she's focused and without-a-doubt, one hard core mamba-jamba.  She pushes Colleen to open up and confront it all. . . ego, worry, pain, peace - you name it.  Although it's a tough place to find herself, these sessions have become a quiet place to retreat.  A place that strips her down to the core; where she's forced to face it all and powers through until she gets to the good stuff.  You know that stuff you realize you're made of when you're caught in moments of challenge and pain.  Yup, she goes there.  At least once, sometimes twice a week.  And she's better off for it.  Her therapy may not be with a counselor of the typical sort, but she is good at what she does and knows how to reach deep into the depths of Colleen and suck the stink out.  Colleen doesn't lie on the quintessential leather couch in the corner, she actually chooses to lie on a thin layered mat; it's the only thing between her and the hardwood floor of the room where she goes to "let it all go".  If you haven't gathered by now, yoga = Colleen's saving grace. 

There's a pose in yoga called, The Knot.  This pose helps to open the heart and throat chakras; considered by believers to be the focal points for the reception and transmission of energy.  Breathe through these chakras and you open up yourself to work through some really tough, rough, good stuff.   The pose calls for you to lie on your stomach and thread your right arm over your left (and again left over right) and place your head on the floor just above where your arms cross.  Like you're hugging yourself with your head and arms parallel to the floor.  After Colleen's session yesterday, she told me that throughout the day, she kept going back to that stretch and called up the power and strength that she felt in that pose.  She said, "I move and stretch and hold those 'you've-got-to-be-kiddin'-me' poses for Lilly, because (right now) she can't move her little body and do that for herself."  Colleen tearfully told her yoga instructor, after class, that she feels guilty for taking 90 minutes out of her day to strengthen and develop her physical being when she doesn't help Lilly stretch and gain strength for that same amount of time.  Her therapist (her yoga instructor) told her that she has to care for herself first before she can help Lilly (not to mention that Lil' is three and would be a pretty-pissed-peanut if she had to hold poses that long).  I guess it didn't help that she played David Gray's White Ladder and Slow Motion albums in class (both are the soundtracks to Colleen's pregnancy and months after Lilly was born - isn't it crazy how music can bring you right back in it).  It was an emotional class but a much-needed reminder that Lilly needs her mama to be strong and with-it physically and mentally.  I've had Colleen promise me that she'll continue her yoga sessions through Lilly's recovery period.  It's what will center her and keep her connected and strong.

I need to remind Colleen that although she may not  stretch Lilly out for 90 minutes, she does put an enormous amount of time and love into that little girl.  I've never, ever, in my life met another mother that works so hard to give her children the opportunity to become the best they can be.  I'm not kiddin' - this mama works it OUT!  She continues to amaze me with her grace and selflessness.  I asked Colleen to snap a photo of her calendar.  I know, it's kinda random, but I was shocked last May when I looked at her schedule.  15 out of 21 business days during the month of May, Colleen was at one appointment or another for Lilly.

I love that the card on her fridge says, "Gardening, yoga, bubble baths, medication - and I still want to smack somebody!"

She continually takes Lilly to physical therapy, occupational therapy and speech therapy.  She has recently  added visits with neurosurgeons, opthamologists, orthotists, and specialized therapists at the Down syndrome Clinic in Portland to her list.  Oh, and in the middle of all of that, she prepared for and spoke on behalf of Lilly at a United Way fundraiser (ya, and I complain about not having spare time - jeez). When she's not taking Lilly to appointments, she's on the phone or writing letters to ensure that Lilly has continuous coverage with therapy prior to and after surgery.  It's only because Matt and Colleen have fought so hard that Lilly is still being allowed to continue with her therapies beyond what was allotted for the year.  I often feel waves of guilt for having Henry and the schedule that we have.  Here, my only worry is if I'll be able to fit in a trip to Winco, with a play date, a workout and be home in time to fix something for dinner.  It's so easy to take things for granted and sweat the small stuff.  I look at Colleen as such an example, and each time I'm around her I learn something new about motherhood.  Her patience and the love she has for her kiddos is more than inspiring . . . she's helped me become the mother that I am today.  And although she has a schedule that would make most people spin, she some how pulls it off and does it all without complaining.  She really is my hero, and we could all learn a lot from her example. 
   

Speaking of heroes. . . I've been calling Lilly the Bionic Woman these days.  She's going to be ultra strong after this surgery, and she'll look like a halo-wearing superhero in the months to follow.  I think we'll have to make her a cape and bedazzle her walker to fit the part . . . watch out, she'll be cruising the streets and saving lives before we know it.  On the pre-surgery front: Lilly had her non-invasive halo fitted two Fridays ago - October 8th.  Lilly wore the halo for 10 minutes, during which time she sang songs from the Sound of Music (oh, you don't even know how in love Lilly is with that classic film - oh, and you have to check out this video if you've never seen Lilly's favorite version of the Sound of Music) in between fist-fulls of gold fish crackers.  "Long live Maria von Trapp and Pepperidge Farms!!!", Colleen said.  Colleen also said that Lilly smiled and swayed back and forth attempting to dance while she was waiting for the doctor to do his thang.  The orthotist recommended that she get a "boy cut" (now she'll really look like Maria von Trapp) due to the halo's confinement.  Lil's hairdresser is also on the lookout for cute pixie cuts - just to make the transition into the halo a bit less stressful.

Colleen and Matt have been disappointed in the communication with the pediatric neurology department at OHSU.  They have not spoken with the neurosurgeon in two months and, apparently, phone calls to his NP are not being returned.  Colleen said that she's "starting to get her mother-bear-on, yo!"  Oh, they better watch it!  M and C have pre and post surgery questions: how do they alter her clothes, how short do they cut her hair?  More importantly, how should they expect Lilly to respond to surgery, medication, halo . . . ?  Lilly's surgery is set for November 5th and M and C would like to be prepared for what lies ahead.  Um, ya.  I don't think that's too much to ask.

Until then, the Roscoe clan is enjoying these beautiful fall days.  It's been nice that the surgery will not be until November (it was originally set for September); otherwise, they would not have as easily enjoyed days like this:

Are you kiddn' me with this garden!

 Lil' pickin' peas

Lilly and Bear Bear enjoying pumpkins picked from their very own garden

I know that in life we all encounter knots.  I'd like to think, in my Polly Anna sort-of-way, that most knots are a good thing.  Without the presence of knots in our life we'd not have the ability to appreciate the times when our line is smooth and without much tension.  Without a few knots we may also spin out of control.  After all, anchors are tied with knots, balloons are tied with knots and rock climbers rely on knots for their safety.  I'm going to take Colleen's lead and suggest that the best way to confront the toughest knots is to breathe through the tangle and mindfully untwist your way through the line.  Take the time to collect your thoughts for a plan moving forward and, in the end, you'll be able to stand up straighter and hold on better than ever before.

In a field past the playground

I've been a fan of blogging now for a while and have been inspired by writers and artists from around the country.  Oh, how I've wanted to join their club; be one of the cool kids.  Secretly hoping to hang on the playground or be asked to eat lunch with the likes of Kelle Hampton, Nici Holt Cline & Anna Maria Horner.  Oh, what a grand group of gals and what an incredible midday feast that would be!  The lunch would be a picnic out there in a field past the playground . . . we'd gather around a handmade quilt, drink wine, eat homemade treats and share our stories.  As a new mom, these girls have inspired me . . . inspired me to create, enjoy, embrace and love with gratitude.  These gals are mamas as well; they are wives, they are sisters, they are creative and clever and I'm beginning to think that I might just be able to hang.  Oh, I realize that I don't have a degree in writing or that fancy camera that I'd do anything to have, but I do have a love for life and the wish to share a few things that make me smile.  I don't know how to sew, cook all that well, or whip up a new design for my latest fall fabric line, but I do find joy in lots.  So here I go . . . .

It's ok if I never get to have that fancy picnic with those fantastic females in a field past the playground, because if I really think about,  I've been blessed to sit beside great women all of my life.  My mom, my aunts, my sisters and my dear friends.  If you've been lucky enough to have fantastic women in your life, I'd say you're lucky enough.  What I'm most grateful for is the fact that I was born with a built-in-best friend.  I have a twin sister.  Talk about having a great gal by my side my entire life.  The bond that she and I share is hard to explain . . . it's a twin thang.  Many may not understand the connection that most twins have with each other - jeez, I hardly understand it myself and here I've been, right in the middle of it.  It's a bond that is deep, rich, lovely, sometimes trying, but mostly a gift that I've been so glad to have been given.  A bond I've been so grateful for as the years have come along.  We've needed each other, whether we've wanted to admit it or not.

When we were little, Colleen and I used to crawl into the same twin bed on nights we were scared.  Maybe it's that one of us had a bad dream or that we'd fought like cats and dogs earlier in the evening and once we'd settled down it was our way of saying, "I'm sorry".  Thank goodness we had the ability to comfort each other, even at such a young age.  I'm so grateful for our closeness.  Somehow we have the ability to make each other laugh at just the right moment, connect when we need refocusing, and heal each other when we're in need.

When Colleen found out that she was expecting a girl in the spring of 2007, I was thrilled by the thought of inviting another lively lady to the picnic!  Lillian Elise Roscoe was born March 27th, 2007.  She came to this world in a determined, powerful kind of way.  Colleen moved through labor like a champ (crazy girl didn't even take an epidural) and met her daughter with open, loving arms.  Colleen was in awe of the powerful moment of birth and meeting her daughter for the first time.

(Please check back on future posts for Colleen's birth story).

Lilly was born healthy and beautiful and with a little extra magic!  Lilly surprised us all on the day she was born by having Down syndrome, which you may know is the addition of a third chromosome on the 21st pair of chromosomes.  So, rather than having the typical 46 chromosomes in every cell of her body, Lilly has 47 chromosomes in each cell.  As we now like to say: the more the merrier.    

For those of you who know me well, it will come as no surprise that this blog is dedicated to my Lilly Girl.  Not only is Lilly my twin sister's daughter, she's become one of my dearest friends.  Lilly has taught me more about patience, empathy, acceptance, faith, humor, strength and perseverance in her short life . . . more than I've learned from any one person in my 33 years.  She has a true zest for life and has been the biggest gift to my family.  With all of Lilly's grace and ability, Down syndrome has still given her a few extra challenges.  After two MRI’s this summer, it was discovered that Lilly has a rare and unique pattern of instability in the C1-C2 region of her neck. It's been recommended by her neurosurgeon that her neck be fused at that location in order to stop damage (bruising) from continuing on her spinal cord.  Her recovery will take six to eight weeks and will involve the use of a non-invasive halo.

I'm writing this blog to honor Lilly as her proud Auntie Kiki.  Not only will this make me feel as though I'm contributing to Lilly's healing process from afar (I live six hours away from her), I hope that the blog will also keep family and friends posted on Lilly and her recovery.  This will also be a place that Colleen and Matt can come to see your healing words and well wishes.  It will be important for their family to have as much support as possible.  Be forewarned . . . if you're not already, you will be inspired by Lilly and her story.  Her strength will amaze you all.  

Here's to loving life and being grateful for all the gifts that we're given.  Enjoy life's picnic . . . whether you find yourself with friends in a field past the playground, with your kiddos in the backyard or with you family at the kitchen table.  Gobble up life's good and graciously embrace the times that bring challenge to the plate.  Cheers to you Lilly Girl . . . thank you for continuing to teach me so much.



"Just you wait until you see what is possible when you shine your little light on this world."