Sunday, January 9, 2011

Good Living

My conversations with Colleen have been quite brief lately.  I call when I have a spare minute, but it's usually when Colleen and the kiddos are rushing out the door or getting down for a midday nap.  Colleen calls when Henry's in the middle of a morning meltdown, or I'm frantically running around the house trying to find my car keys - for the third time that day.  Our chats are quick, and we spit out a few important bits and promise to touch base later in the day.  Sometimes that happens, sometimes it doesn't.  And although our chats are quick and to the point, I've gathered warm and thankful vibes from Colleen.  Sure, she has tough days, but for the most part, she and her little family are living good.
Our favorite:  Curly Girl Desgin
Enjoying the holidays and the new year, halo free, has been such a gift.  I've had friends ask me how Lilly is doing and I say, "She's doing well."  Although, because of our quick conversations as of late, I don't know what Colleen's perspective is in this very moment.  So, late Friday night, Colleen sat down and wrote:

First day back to PRIDE since Lilly's surgery. Again, Ryan continues to see improvement in Lilly’s posture while sitting and when using her walker. Lilly moved it, climbed it, swung it, and jumped it this afternoon.  Ryan, Lilly’s PT, and I were amazed with her stamina and curiosity in activities that seemed too difficult or uninteresting pre surgery: climbing up a sheet-covered foam mattress mountain, um . . . watch it, Everest; scaling a rope ladder with her sherpa mama; and even walking with tripod-style canes from one room to another were rocked out today!  A sense of newness and freedom seemed to take over the afternoon.   And . . . oh, was that needed.  
Matt and I have recently found it difficult to answer the question: “How is Lilly doing?” Really, where do we start? Well, she’s mostly her fun-loving, sweet-talkin’, charming self . . . but, the girl gets pissed. As do I (Matt seems to hold it together much better than me - thank goodness). This is still such a slow and really who-knows-how-it-will-all-work-its-way-out kind of journey.  To not know if your baby girl will be able to place one foot in front of the other without the use of some cumbersome contraption that has the potential to rip the hell out of every white-painted piece of molding in our home or make every head turn on a school playground is hard. To not know if she will be able to dress herself in a mismatched outfit that she insists on wearing out to a nice family dinner is saddening.

But, one thing I do know is that Lilly is growing and learning and loving and moving in ways she never has before. So, rather than flounder in the future and wallowing in the what-ifs, I guess I really do know how to answer that question. Lilly is doing beautifully! Our little girl is becoming a young lady and, without this surgery, maybe she wouldn’t have begun to emerge from her tiny cocoon as she is doing so gracefully now.
I'm also so thankful for the friendship and love that has blossomed between Lilly and her brother Barrett.  It just recently became clear to me that the halo kept distance between Lil' and Bear during that stage of recovery.  But, they are certainly making up for lost time.
Sled rides while visiting the cabin in Trout Lake, WA
Their beloved Mt. Adams in the background
Barrett, at any chance he gets, circles around Lilly and leans in for a behind the back, hands around the neck, lips to the outer edge of the ear hug.  This happens throughout the day, and each time it is joined by the two of them sweetly harmonizing the sound of, "Aaahhhhh!"  There's constant wrestling, chattering, fighting, kissing, and side-by-sidin' in our house.  My heart swoons!
I love Colleen's honesty and the love she has for her family.  She was meant to be a mama, that's for ding-dang sure!  I also love to hear how Lilly and Barrett are together.  I just want to bottle up their goodness and drink it - cheers to that!  Lilly is already bringing out the best bits of Barrett . . . he's going to grow into such an amazing man with a sis like Lil'.  I'm sure he'll be uber sensitive, compassionate, and kind. . . three traits that all men should be lucky to possess.  He already has a wicked sense of humor (that kiddo is a crack-up) and loves people most of all.  Wonder where he gets that?  He is such an awesome blend of his mama and dada.
 I'd say, both these kids won the lottery. 
I'd say we ALL one the lottery.  Well, not the in mega $190 million dollar sort of way (although one of the winning tickets was sold just 5 minutes from my home - shucks!) but in the "I'm livin' life to its fullest" sort of way.  Lilly has a knack for giving us gifts that money can't buy.  From her first breath, she's been busy teaching us what this life is all about. 
Just look at her.  I dare you not so smile and feel better about the day when you see her sweet face.   Because of Lilly, I volunteer with the Special Olympics, I run an extra mile, and I go out of my way to help out someone in need.  Because of Lilly I've also been able to meet other fabulous mamas, aunts, and siblings that are in some way connected to Down syndrome.  One mother and daughter duo in particular has knocked my socks off.  Many of you may already know about Ms. Kelle Hampton.  She's one kick-ass mama and her daughter, Nella, is a "rockstar".  She's a few years younger than Lilly (in fact, she's turning ONE in just two short weeks) and although she may be too young to know it right now, she's stepped into this world and has been making huge changes ever since!  Kelle and Nella have reached hearts and inspired souls on a global level to make a difference in the lives of people with Down syndrome.  In honor of Nella's first birthday, Kelle has asked us all to "pay it forward."  Whether or not you know Lilly or Nella first hand, I'm sure if you're reading this blog (or Kelle's blog) you've been touched!  Let's give back and support Nella's Rockstars ONEder Fund!  You just might recognize a little blondie in the pictures of Kelle's latest post. . . check it out HERE!  

Thank you Colleen and Kelle for teaching me so much in my first year as a mama.  You girls have inspired me beyond words.  And keep up the good living Lilly and Nella - you girls ROCK!!!

"Just wait until you see what is possible when you shine your little light on the world!"
  -Leigh Standley