Monday, December 13, 2010

Love It The Way It Is

The holiday season, as well as two Vaughan boys' birthdays this month, has taken over here at my house and I've not been great about updating y'all on Lilly's progress.  I know that many of you are anxiously waiting to hear the latest.  So, I've asked Colleen to get in on the blog writing bandwagon, saddle up and take the reins on this post.  Here are a few words straight from the Mama herself . . . giddy-up!

Colleen wrote:
Well, I feel a bit out of place writing on Kate’s blog, but this on-line journal IS about my daughter, right?  Permission to write, then, is granted.  Both babes are tucked in tightly for their afternoon nap and my bare feet are toasting by the wood stove.  If all goes as planned, I will have a chunk-o-time with which to write about our little family and about how thankful we are for the loads of love and heaps of help we’ve received during Lilly’s pre and post surgery journey.  Quietness still reigns from the kids’ bedrooms, and my tootsies are comfortably warming, so . . . ready, set, go!

I still can’t wrap my head around the three, oh-we-have-this-one-in-the-bag, days left until Lilly gets off her halo.  I can’t believe we will one day say, “Oh, Lilly?  Yeah, she totally made wearing a freakin’ halo for six weeks no big deal.”  Lilly even managed to figure out a way to roll, crawl, and dance in that bad boy.  When I see our little girl, who insists on wearing skirts when she boogies and who says, “Gross, Matt!” when her dad contorts his face in all manners of funniness to get her to laugh, I can’t believe how strong she is.  She’s just three and her little body has undergone so much. 

Since her surgery, I’ve become an expert on Lilly - even more than before.  I’ve studied the way she moves, the way she speaks, the way she teases, the way she empathises.  This surgery and its recovery has awakened me to the way Lilly "deals".  She recognizes, accepts, and moves on.  I’m sure she has not only taught me a tad-bit about life, but I hope she’s snuck her way into your consciousness when you are heavy with hurt or pain or worry.  Lilly’s ability to love it the way it is, is contagious.
Lilly getting ready to create orange and clove ornaments for her Christmas tree.
Loving life the way it is at this very moment, even when . . . .  If Lilly can moonwalk with a halo and walker, what are you able to do and love in moments of discomfort or pain or fear?  What are you able to appreciate in times when life feels like it will swallow you up or when the future seems too big or when you don't have the right answers?  Lilly has taught me, through all of this, that the more you love life, the more it will love you.

Well, we’ve been loving life pretty well these days.  Plenty of merry Christmas cheer flowing in the Roscoe household.  Lilly and Barrett still haven’t complained about the hours of Pandora’s “Nat King Cole Christmas” channel.  Nor have the layers of dried glue and glitter on their fingers or piles of red and green pipe cleaners on the dinner table seem to bother them either.  Ah, they are their mother’s children. 
Lilly picked out green from this magazine . . .
added a little Mod Podge to the styrofoam/paper and . . .
VoilĂ !  She made her very own Christmas wreath.

Along with crafts, we are kept busy with visitors and visits.
Ryan, Lilly’s physical therapist, works with Lilly at our place one morning a week, and each time Ryan notices changes in the way Lilly moves.  Lilly is, when standing stationary, able to automatically drop her heels and stand flat-footed. Prior to surgery, that movement was normally forced by one of us.  She also comfortably staggers her feet and places weight on her right foot (the one that was tightest pre-fusion).
The surgery may have lessened the pressure on the spinal cord, which in turn has given her new movement.  Small changes hopefully will develop into bigger changes over time.  We will have to help reawaken Lilly’s spine once her halo is removed with as much movement and stimulation as possible.  A bit daunting to think that our efforts directly impact the way Lilly will continue to heal.  Love it, Colleen, love it the way it is - Lilly keeps whispering that one in my ear.

My sweet mom watches Lilly one day a week, while I take Bear to yoga (yoga + child watch = one relaxing morning).  As well, my mother-in-law spends a few hours each Wednesday with the kids, so I can run much-needed errands.  Is wandering through Battle Ground's main street antique shops count as an errand?  Um, yes it does!  Thanks, Mama Mattie.

So, this Wednesday is Lilly's final day with her halo.  Oh, to hold Lilly in all her sweet softness - no bars, no metal, no straps, no padding.  I never realized how precious the ability to hold, and I mean really hold, your child is.  Though it's been difficult to not physically console and love Lilly as we normally would, the halo has forced us to show tenderness to Lilly in ways we never did before.  In fact, I have discovered that my lips and the bridge of Lilly's nose were made for each other.  And, Lil's elbows?  Well, they are just as delectable.  Lilly will soon be halo free, but not entirely orthotic free.  In order to protect Lilly's weakened neck muscles, she will sport a neck collar for two to three weeks.  This device will support Lilly's neck as well as build up strength lost during the use of the halo.  But, we can do wonders with a neck collar.  Scarves, anyone? 

Whatever challenges are to come during this new stage of the journey, I know that we will recognize, accept, and move on as Lilly has so gracefully done.  So, might I suggest a little moonwalk-dancin', pipe-cleaner craftin', and nose bridge kissin' to help you love life the way it is!  Yee haw!!!

P.S. Thank you all for loving Lilly and our family the way you have. Your prayers, vibes, notes, visits, meals, house-helping, gifts . . . are so appreciated!

Thursday, November 25, 2010

Give Thanks and Dance

I  feel at home here.  I love the warmth of the fire, the scent of a freshly baked pumpkin pie and the laughter of family around me.  Darin and I decided to pack up and stuff ourselves, our baby and two dogs into our Subaru and make the trek to see my family here in southwest Washington.  It's been almost 5 years since we've all been together for the grand feast that we'll have on this Thanksgiving day.  This, coupled with the fact the my family loves food and knows how to throw a good party, has left me feeling giddy at this very moment.  I love these people and feel so blessed this year to be surrounded by them.
Thanksgiving has always been one of my favorite holidays and has given me some of my fondest memories to date.  When we were little, our grandparents would arrive from San Francisco and the celebrating would begin days before the turkey was on the table.  My parents would bake and prepare while Colleen and I would gather leaves, take bundled-up walks and dance the Irish jig in the living room with Mimi, my Grandma.  We looked forward to this holiday more than others. . . mostly because of the fantastic food my parents would prepare but mainly because of the family with which we were surrounded.  As an adult, I moved away and the holiday has changed a bit for me. . . but this year, I feel it again.  The Thanksgiving of my childhood is back in full force!  Pies are baking, rolls are rising and the cranberry sauce is a-simmerin'.

I love that Colleen writes on her cookbooks.  She often writes how old her babies are and what she and her family are doing when she makes a recipe.  Double click on the image for a look and for the recipe to the Barefoot Contessa's Cranberry conserve.  Yummy.

We are a family that takes comfort in tradition, although some traditions seem more sweet and pack more punch when left for the day of the actual holiday.  So, we set our leaf-gathering and pie-making aside and filled our days leading up to Thanksgiving with a trip to the Oregon Zoo, a treacherous drive midway to the coast, a day in downtown Portland, and plenty of after dinner "dance parties".
Lilly, Colleen and Barrett at the Oregon Zoo

We arrived at the Oregon Zoo with three bundled babes, a pack full of snacks, and our choice of primo parking spots. Note to self: when you don’t want to battle-it-out in the parking lot or in line at the concession stand, head to the zoo when the temperature is just cold enough to freeze your nose hairs and make it a tad bit difficult to form words with your mouth: 34 degrees was a bit cold.  But . . . Lilly and the boys were determined to reunite with their bedtime story friends: “huge hippo”, “big o’ elephant” and "brown bear, brown bear".

I loved this carved piece at the zoo

Bundled up on the "farm" at the zoo

Five layers of clothes, three cups of hot chocolate, a new menagerie of storytelling characters, and one degree warmer on the zoo’s entrance reader board later, we headed back to our conveniently parked cars and drove to Big Reds - a restaurant close to the zoo and one where we ate as kids.

Our nights have been full of laughter and music.  Lilly has been the ring leader and lets us all know when it's time to turn up the music for a "dance party".  After-dinner-rock-out-sessions have been the evening’s highlight each and every night. 

Turns out, Lilly's a big fan of hip-hop
And while Matt's been at work, Uncle Darin has become Lilly's new favorite.  Yes, Auntie Kiki is now a close second to Lilly's Uncle D.  She calls out for him and says, "Where did Darin go?"  What am I, chopped liver? 
Henry and Lilly walking around the table with Darin

We've been able to venture out, although the weather here has been pretty darn cold.  Darin, Henry and I tried to make a side trip to Gearhart, Oregon but turned around after 2 hours due to the snow and temporary closure of the main coastal pass.  So, instead, we opted for a trip to Portland's NW 23rd and the Pearl District.  Found a slice of heaven at Paper Source . . . and gathered a great crafting idea from Kelle Hampton.  Thanks Kelle!
Lilly's hand on the left. . . Barrett's hand on the right

I know that this may sound awfully clichĂ©, but I love that this holiday reminds us to focus on giving "thanks" and allows us to recognize the gifts we've been given (or have given) throughout the year.  I'm so grateful this year, more than any other year, to be among my family to celebrate this holiday.  And although we no longer have my Grandfather here, we can still listen to "Alice's Restaurant", dance 'til we drop and eat the gourmet food that my family will prepare.  I am forever thankful for our son, Henry, and I'm beyond thankful that Lilly is healing and is recovering so remarkably well.  And to top it all off, we're all here, celebrating this feast of thanks, together.  I wish you all good health and the ability to appreciate all that you have in this very moment.  Celebrate with your families and after you gobble your feast, don't forget to dance.

 Happy Thanksgiving!


Sunday, November 14, 2010

Keep Calm and Carry On

Darin and I were shopping in downtown Spokane and went into our new favorite coffee shop called Atticus.  I've been there three times in the past week and just can't get enough.  If you know us, you know coffee is a big part of our day.  Nothin' better than snuggling up to a warm cup of Joe on a cold fall morning.  Heck, who said that coffee's only good in the morning?  I say, enjoy a warm cup while you're waking up; add ice chips to the coffee for a little afternoon pick-me-up; and if there's any left by evening time, why not add it to brownie batter, bake it up for dessert, and call it a day!  Okay, maybe that's going overboard but you get the idea.  Coffee = a calming comfort, in our book.  I've been drinking a lot of it lately.

While shopping in this darling little shop, we kept coming back to its British section.  And, here's what we found . . . we just had to buy it.  
Keep Calm and Carry On was a motto followed during the second World War as a morale-boosting reminder for the British during the "testing times" that were ahead of them.  Now it's become kitchy art sold in trendy coffee shops, but I still love it and it's a good reminder to keep things in perspective.  It's a universal lesson to learn and live by. . . when faced with a challenge or something that seems "too big", just remember to stay calm and don't freak out.  It will all be okay.  I told Colleen about the piece and she told me she's been the queen of many freak-out-sessions recently, but this experience with Lilly has helped her surrender to the unknown and approach difficulties with an openness that was not there before.  To head up hill, mentally or physically, is to open oneself up to the discovery of how beautiful and calm the view can be from the top.  When Colleen finds herself not carrying on as well as she'd like, she often reminds herself of the reaction to life Lilly needs to her to have . . . or even what reaction she would like Lilly to demonstrate when faced with tough times.  Keep calm and carry on, sista!

I'd say, with all that has happened recently, Colleen and Matt are carrying on quite well.  They've both been home with Lilly during this time and have been busy keeping her comfortable and entertained during her recovery.  Lilly, within a week's time, has emerged from a sleepy, not-so-like-herself little sprout to a laughing, drawing, wanting-to-chase-her-"baby bro"-'round-the-dinner-table big sister.  Yes, that tough cookie asked for her walker, got into position, and booked it around the house last night.  One week after surgery and Lilly's already on her feet!  Before that time, Lil' indulged in some hardcore video/movie watching (which is a huge treat for her and something that she would not typically do).  There's only so much you can do to entertain a 3 1/2 old in a halo.  I guess that's not entirely true.  Lilly has been spending a lot of time at her art station at the kitchen table and much more.

She's painted and drawn-up masterpieces on her tabletop easel and even created stories about the pictures she and Matt have made.  She also loves to organize her Charlie Harper memory cards, read her favorite books, and listen to music.
When I spoke to Lilly on the phone yesterday, she mentioned a boy named Michael.  Apparently, Michael was the boy Matt drew while we were on the phone.  When Matt asked what the boy's name was she said, "Michael!"  Both Colleen and Matt were unsure where she picked up the name, but my first thought was that Michael must have been angel that was with her in the hospital. 

P.S. St. Michael, the archangel, is the patron saint of grocers, mariners, paratroopers, police, and sickness. Lilly, you and your friend, Michael, are quite a pair.

When Lilly arrived home from the hospital, her Auntie Evie greeted her with balloons and a welcome home sign above her bed.
        Lil's bed has been moved into her parents' room to make it easier for bedtime.

The fam has also had dinner delivered by family and friends each night, and flowers and care packages full of goodies have also made an appearance. Lilly's in love with the sticker books, art projects, and the coolest pop-up book known to man. You all know how in love she is with The Sound of Music. . . .
Well, take a look at this!

Are you kiddin' me with The Sound of Music pop-up book!  Colleen said that Lilly's face lit up when she saw Maria twirling on the cover.  It was meant for Lilly, and now she has Salzburg in the palm of her hand.   
A dear friend of Matt and Colleen's has also worked hard on modifying a few new outfits in order to accommodate the halo and make is easier for Lil' to look her finest.  All the things that you don't think about when you're faced with wearing a halo.  Thank goodness for crafty girlfriends!
Colleen's been busy keeping their home comfy for their days in.  Although the surgery was not something she was hoping to go through with Lilly, she's making the most of her quiet time with her family.  It's forced Colleen to calm down a bit; slow her pace and focus on her kiddos, Matt and her home.  She's been so grateful for that!
Auntie Evie created a "recovery chain" for Lilly. She gets to pull one paper chain off each day in celebration of one more day of healing.  

I can't wait to have coffee with you next week.  Warm up the carafe and get ready for Auntie to spoil the heck out of you, girlfriend!   Cheers to you Lilly.  We all love you so very much.

Friday, November 5, 2010

It's Finally Here!

Please see surgery updates on Lilly at the bottom of this post.

Today is surgery day:
On this very early morning, I know that Lilly and her family are on the road to Doernbecher and beginning a day unlike any other.  It's surgery day. . . finally, it's here!  I wanted to quickly share a few darling photos that were taken of Lilly and her family just a few days ago.  Colleen's sister-in-law, Rachel, is amazing and so nicely offered to take a few candid shots of the family.  Here's a sampling of the goodness:

 Oh, I could go on and on with with photos.  They're fabulous, Rachel!

 Lilly also wanted me to show y'all her new hairdo.  She's set and ready to go and is really rockin' the pixie.  Watch your back, Maria von Trapp!  Lilly might just give you a run for your money.

Lilly, I want your new do!  And Colleen, how the heck did you make her headband.  Are you kiddin' me with that!

Lilly and her family wanted to send out a thank you for all the support they've been given during the preparation for today.  Please continue to keep Lilly in your thoughts and prayers as she undergoes surgery this morning and recovers in the months ahead.    

                              Sending healing thoughts your way, Lilly.
                                       Your Auntie Kiki loves you!

Surgery Day Update
*Lilly arrived at Dorenbecher  for a 6:15am check-in and surgery prep.  Matt said that Lilly knew something was going on and was extra clingy, but that she did well after the nurse gave her a little "sleepy-time" medicine.
*At 9:00am a nurse called to tell Matt and Colleen that things are going well and that the surgery is underway.
*Around 12:00pm, Lilly has made it through surgery (YIPPEE!!!) and will be in recovery for about an hour.  Colleen said that neurosurgeon said things went better than expected!!!  Colleen and Matt will be able to see her for the first time in just an hour or so.
*Lilly woke up around 3:00pm and has been moved to the Pediatric Intensive Care Unit (PICU). She's presently sipping water and watching cartoons.  She's been reaching out for her parents and is calling out, "Matt!"  Her speech is clearer than they thought it would be at this point and she is saying words and short sentences ("Matt, hold you," "More water," . . . ).  One of the first things she said was, "Out."  She does not like the halo and is fighting it a bit.

*Colleen wrote late last night:
Lilly just woke up from a two hour nap and got a dose of Tylenol and Oxycodone.  She's watching Finding Nemo and had several bites of applesauce before her cocktail of medicine.  She's commenting on her movie and is even laughing at times (even before she took the meds).
I've made our bed - well, I put a thin sheet on the cushion of a window couch and Matt and I are going to attempt to squeeze into bed soon.  I did place Lilly's prayer quilt, which was made by a family at PRIDE that we've known for several years, on our "bed" so there is a bit of comfort and coziness in our room.  Lilly is wrapped in a soft, pink and orange owl-covered blanket that Evie made her.  Right now, things are good.  Another dose of medicine will be given in four hours, or whenever Lilly seems to be in discomfort.  At that point, things will be even better!  We are hoping for a little sleep and expecting to see Lilly to improve hourly.
I've only had one mini-meltdown tonight.  It was when Lilly was asleep - it got to me.  This whole thing seems too big sometimes.  But then, when Lilly woke and ate her applesauce, it felt better.  Each little step is one step closer to Lilly being healed.

First full day after surgery:
*Lilly slept fairly well last night and took a long morning nap.  Lil' ate a good amount of eggs and coffee cake this morning and is continuing to ask for water and juice.  Colleen and Matt propped her up in bed with a pillow and she watched cartoons this morning (she's lovin' that!).  Pain is being managed and Dr. Selden, the neurosurgeon who preformed the surgery, will be in at some point today.  At that time, they should be moved to the general recovery wing.
*The family is enjoying their new room on the recovery wing.  It's a quiet room of their own and they're settling in for the next two days or so.  Lilly is napping quite a bit and each time she wakes, she realizes she's in the halo.  Colleen says it's so hard to watch her rediscover that she has the halo on and is still wanting to be taken "out".  Lilly seems comfortable and feels especially comfortable in Matt's arms.  They've been rocking in a chair and lovin' on each other every chance they get.  Colleen has been a bit concerned by the swelling Lilly has around her face and the fact that there have been a few meals that she's been uninterested in.  The nurse says that both are normal at this point.  While Lilly naps, Colleen and Matt have been able to have quite time together.  They've been reading, playing Scrabble and having good talks.  I'm happy for that.
Sleep tight Lilly.  Love you.

One full day of rest:
*The family slept pretty well last night.  The nurse woke Lilly twice to give her pain-meds (once at about 1:00am and then at about 5:00am).  Other than that, she slept the whole night - as did Matt and Colleen.  She's been able to nap to the sounds of the sea scape channel, and Matt and Colleen have been sitting on the window couch in the sun (an on-going game of Scrabble has helped pass the time).  I spoke with Lilly this morning and asked her what she thought about the eggs she had for breakfast.  She said, "Good."
*Sounds like Lilly and her family were able to rest most of the day.  When I spoke with Colleen this evening she sounded really well rested.  I'm bummed that my conversation with Colleen was cut short tonight (Lilly's dinner arrived and she was in need of another dose of medicine).  She did quickly tell me that an on-call orthotist, neurosurgeon resident, and their awesome nurse helped them dress her incisions for the first time.  She didn't go into detail but did say that the experience was very difficult (I'll spare you the actual word that she used to describe the procedure) and that they will just have to get used to it.  Sounds like Lilly is doing well when they keep up on her medication.  When I called, Lilly and Matt where drawing.  Lilly had just finished with her piece. . . it was a tree, the sun, and a few clouds.  Sounds like my Lilly Girl. . . she loves her art time - especially with her Dada.  If all goes well tonight, it sounds as though they may head home tomorrow.
Heal up Lil'!  Your brother and your family want you home.  We love you, sweet girl.  Night-night.  

Last day in the hospital:
Colleen wrote:
The fourth day in and Lilly is continuing to progress in her healing and acceptance of the halo.  As are we . . . healing from the stress build-up prior to surgery and accepting this new way of living for the next six to eight weeks.  Though we've only been at it for several days now, it seems manageable.  This whole experience is here; we are finally living and breathing it.  But, this challenge will come and go and be a distant memory where our only reminder will be two scars (one three inch long scar running vertically down Lilly's upper neck and a two inch horizontal scar midway up the right side of Lilly's back).  Oh, and Lilly's healing in her cervical spine will be a huge sign of change! The hope is that her spinal cord, without the C1-C2 pressing on it , will regenerate and allow for signals from the brain to the rest of Lilly's body to flow correctly and effortlessly.  Intensive PT and OT will help in getting Lilly's body to heal and work differently.
Lilly met and worked with three PTs at Doernbecher today.  We attempted to get her to stand at her walker, but her balance from the weight of the halo made her uneasy and upset.  So, Matt cradle-carried her to the playroom on our floor and she cooked up a mean breakfast of pizza, pickles, and cookies at the play kitchen.  Tasty!!!  It was a most delectable sight to see Lilly playing.  Though her confidence on her feet is not yet there, it was confidence-boosting to see her interact with toys that are similar to what we have a home.  Look out tiny play kitchen, table-top easel, and doll house - here comes Lilly!
We are still waiting for the on-call orthotist (a real kick-ass guy who helped fit Lilly for her halo several months ago and was able to scrub into the OR on the day of Lilly's surgery).  He even called us this weekend to make sure our questions and concerns were addressed.  What a perfect way to end our stay at Doernbecher: seeing the same orthotist we started with.  As well, we expect a visit from Dr. Selden and his NP today.  They will give us the all-clear to head home if they agree she is ready to depart.  We may try and practice changing Lil's dressings one more time to build a-bit-more confidence in tending to them at home.  Yesterday, we tipped Lilly forward onto her belly, placing her prone on two stacked pillows.  It was at that point, that the orthostist, neurosurgeon, and nurse helped pop open the straps on the halo (of course, she was lying on them).  The back portion of the halo was then lifted off and the incisions were then cleaned.  They both looked healthy.  It was Lilly's crying that made it difficult.  And, then there was the thought that we could misaligne her spine.  Oh, those we my fears - there was limited risk in harming her vertebrae or ribs.  Still, that experience ranks up there as one of the must unpleasant so far.  Moving on . . . .
On a happier note, Lilly spent the entire night off of oxygen and her IV.  At her 12:00am wake up, she said, "Want some water, Mama."  Yes!!!  She had resisted liquids and food most of the day yesterday: mostly scared of swallowing.  Lilly has continued to gain confidence in drinking and eating - take that bowl full of applesauce!!!
Well, we wait comfortably.  Lil's sleeping, the sun is bursting through the clouds, and our game of Scrabble calls.  Thank you all for your love and thoughts, and prayers!!!

*Lilly was just seen by the orthotist and Dr. Selden.  Colleen and Matt cleaned her incisions again, and it sounds like they all rocked it out!!!  Both Colleen and Matt feel much better about  the dressing of the incisions at home.  As well, Doctor Selden said that Lilly will probably have the halo taken off in six weeks due to her age and because the x-rays looked good.  Another set of x-rays will be completed in two weeks as well.  Good news all around.  The best news is that the family will all be home in time for dinner!  Yippee!!!

Lilly's done with the hospital and is excited to be heading home to heal with her family.  Keep up the good work Lilly Girl!!!  Your Aunt Kiki is so proud of you. 

Please feel to email me if you have any questions.

Wednesday, November 3, 2010

Ain't Nothing Gonna Break Her Stride

It's like standing in the crowd of a marathon start.  You can feel it.  There's a buzz in the air.  The anticipation of what the day holds ahead of you, the excitement of racing forward, and the overwhelming feeling of, "what the hell did I sign myself up for" fills your entire being - heart pounding, palms sweating and your stomach in knots.  The gun sounds and you, my friend, are on your way.  You're running among a pack, but the race is all yours.  No looking back.  Put one foot in front of the other at a steady pace and you'll find your rhythm and stride in no time.  Walk through the water stations if you need to take a breather and gather strength from the crowd around you when you need that extra push.  Your body can do this.  You've been preparing for this race for some time now and there is a finish line to the end of this grueling 26.2 miles.

Colleen's been able finish two marathons in her life.  Yeah, the crazy girl went back for more and did it a second time.  I know, she's crazy, right?  My sis has the highest pain tolerance of any gal I know.  I'm not kiddin'.  Both of her babies were born without the use of an epidural and her appendix ruptured while on a ski trip in Snow Bird, UT.  No big whoop.  And two weeks ago, while on a run, she took a dive off the curb, dusted herself off, and drove herself to urgent care to get an x-ray on her ankle.  She nonchalantly called me on her way home and said, "It hurts like a %#@&*, but it could have been worse."  Nothing like sportin' an aircast while you prepare your daughter for neck surgery.  Oh, you girls continue to be two peas in a pod.    

Lilly is her mother's daughter.  She's one tough cookie, I'll tell you that much.
                                                                            Lilly turning-it-out on the track
Lilly's been training now for a while.  Well, since the age of two months to be exact.  Therapy or "the gym" as we like to call it, has helped her a great deal along way.  She's been fighting since the day she was born to gather the gifts of movement that most of us have and take for granted.  The race that she's about to "run" will be grueling and will not come without a few steep hills and winding switchbacks.  But, she's closer than she's ever been and the finish line is just within reach.

The last appointment prior to Lil's surgery, which must seem like the last long run the week before a marathon, was today.  It's during that run that you must accept the future and its possibilities but know that mentally and physically you've done all you can leading up to that point to prepare.  Matt and Colleen took Lilly to Oregon Health Sciences University where they met with the neurosurgeons' nurse practitioner regarding the day of surgery. They were given details such as: check-in time, length of surgery, length of time in recovery . . . .  It wasn't asked when Lilly would seem like Lilly again; but they know, with time, their sweet-talkin', crusin', boogalooin' baby girl will reappear.
 After an hour's discussion with the NP, Matt and Colleen took Lilly to the upper campus of OHSU for a blood draw and a visit with a surgery nurse.  Lil's mode of transportation resembled that of a space-aged carriage fit for a pint-sized princess.  The Tram at OHSU is a high-flying, fast-moving coach that delivered Lilly and her parents to Doernbecher Children's Hospital.

 The length of their final training run lasted over four hours from start to finish, but having questions answered, walking the halls they may pace on Friday, and connecting with those who will care for Lilly will make this marathon seem manageable.

Lilly, ain't nothing gonna break your stride.  Remember to run this race at your own pace.  We'll be there cheering you on the entire time.

You, my friend, are on your way.

Lilly's surgery is set for this Friday, November 5th.  Please send healing thoughts her way.

Thursday, October 28, 2010

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:

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.

Wednesday, October 20, 2010

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.