A Frostie

“Whose woods these are, I think I know.
His house is in the village, though.
He will not see me stopping here,
To watch his woods fill up with snow.”


                              — Robert Frost


These are the first four lines of the poem we introduced to Abbie last Wednesday.  They are also the lines she memorized over the weekend.  How do we know this?  Rae figured out a way for her to prove what we suspected she’d already learned.


Rae wrote half of each line on an index card, she then put three of the cards on the board.  Without reading the choices to her, Rae would ask Abbie, “What comes next.”  She didn’t miss once.  So, not only was she able to read the cards, written in ballpoint pen at a normal size, but she was able to correctly sequence the lines.  Not bad for three days’ work!!


We thought we would show this to her teacher today, and this opened my eyes to the challenges ahead, which are surmountable but present.  Abbie was taking longer to answer, and we finally figured out that much of it had to do with her  positioning.  Because she cannot adjust her own body very well, if she is not in a position that makes it easy to use her switch, she is not able to activate it.  She still did OK, though.  I am just hoping that when she takes a while to answer questions or do her board work the bias will become “what is preventing her from using her switches?” rather than “she is not understanding this” or “she takes a really long time to think.”


We’ve become very adept at making it as easy as possible to communicate, but they’ve asked me now to step back and allow them to take the lead.  I am biting my cheek as I type, hoping it will stimulate the right words to describe how I feel about that….scared, excited, nervous, hopeful, wary, trusting..it changes from one moment to the next.  But, I do feel that this is the next step in Abbie’s Grand Adventure with God, and if nothing else, I trust in Him and in my girl who outdoes expectations at every turn.


One other little “peek behind the curtains.”  We’ve been meeting with dizzying numbers of people in recent weeks to determine and coordinate the appropriate services for Abbie.  This being a public site, any and all are welcome.  However, it turns out that some in our service net read Abbie’s website to determine what kinds of services she needs…I am not sure who, but the word we’ve recently received is that because, according to this blog, Abbie has gotten so much better,  we should be prepared for less services.  


Ray’s eyebrows rising to meet his hairline is fair warning that steam will be  erupting from his ears in short order.  The above situation elicited that look, and he curtly asked me to leave the room so he could set the record straight.  I knew what he was going to say, so I politely declined to leave, and spoke on my own behalf.  He was going to tell them that I focus on the positive, the hopeful and the good and that doing so is essential to my survival through all of this.  His point may be valid, but I boiled it down to “we choose to make our victories and progress public, while keeping the challenges and struggles a bit more private”  (except for now, apparently!)  


For whoever is using this blog as an assessment tool…first off, shame on you — there is a reason we fill out so much paperwork and and coordinate with so many people.  This blog is for family, friends, and fellow trekkers.  These people deserve to hear how wonderful our little girl is doing without the continual layering-on of the reality of life with a brain injury… we never get a full night of sleep; we are constantly battling her body to keep it from contracting, from being injured or requiring more surgery; her respiratory status requires constant vigilance; caring for her is the most demanding thing any of us has ever done.  Unless you have walked a mile, or a day, in our shoes you cannot understand.  That is part of the reason we don’t prattle on about it….those who’ve not been here can’t comprehend, and those who have don’t need the explanations.


Whew — I think that qualifies as a rant.  I apologize, but I guess it’s reality.  Abbie’s soaring cognition is one precious aspect of her life, but the things listed above are always in play as well.  We could really use your prayers for those areas – particularly about keeping her body as limber, aligned and functional as it can possibly be.


Back to our Little Miss, who has become so enthralled with not only “Stopping by the Woods on a Snowy Evening”, but  also other works of Mr. Robert Frost (as we call him), that I am now calling her my Little Frostie.  In fact, in her honor, I will close with his sublime words, as they seem so fitting on a busy night:


“The woods are lovely and dark and deep,
But I have  promises to keep.
And miles to go before I sleep.
And miles to go before I sleep.”


May God bless you!!

5 thoughts on “A Frostie

  1. Yay Varas! ALL of you are such an encouragement to me and such a representation of how to walk faithfully, step by step in the light that is leading you. I am sending your website to a friend whose husband had a severe brain injury from a bicycle accident at the end of September. The wife's name is Abbie:) and I think she will be very encouraged from your story. Love you all. Karen

  2. oh my…yay for you telling "them" like it is!!! how dare they! unbelievable. i guess we will always run across people who REALLY just don't get it. and can't find the heart pass the reality!!! gosh i feel you on that one…

  3. From your 'friend in the firehouse'… you deserve to rant at this in anyway you feel; I have followed your journey for the past years since that day, and you and your Ohana never cease to amaze me.

    I believe it was a year ago when I saw Abbie for the first time since that day; she was with your assitants or therapists at Starbucksat the mall. I said hello and such, and pretty much had to keepmyself from tearing up; not only in my heart,but in my eyes.

    It is hard to explain, but your journey makes my slight delays in life seem so small.

    I wish and pray or nothing but the best for you all.

    Best to you all in 2010.

    Aloha.

  4. Hi! My name is Sarah and I'm a long-time follower of your blog but a first-time commenter. I'm a college student who works with special needs kids. I also follow more than 200 blogs, and I'm sending a very special message to all the blogs I follow: YOU have the chance to be part of a miracle!

    If you are a member of Facebook or know someone who is, please take the chance to do something incredible!

    Chase Community Giving is awarding $1 million to 5 charities! The Gwendolyn Strong Foundation is working to find a cure for Spinal Muscular Atrophy – and they could use the money!

    Fast Facts:
    – SMA is the #1 genetic killer of infants under the age of 2
    – 50% of those diagnosed will not live to see their 2nd birthday
    – kids with SMA lose the ability to sit, stand, walk, talk, eat, swallow, and breathe
    – 1 in 40 people is a carrier
    – the National Institute of Health says that SMA is the #1 CURABLE disease if given research funding
    – right now there is NO cure and NO treatment

    Want to change that? Vote for the Gwendolyn Strong Foundation on the Chase Community Giving app on Facebook! You have five votes to tell the world that you want a CURE for SMA!

    Tell your friends and blog contacts – let them know they could be part of a MIRACLE – be part of a CURE – and give these kids a FUTURE!

    Thank you!

  5. May the King of Kings grant you the victory in every detail of every day, precious princess girl!! We are cheering & praying always, SS!!
    xoxoxo in Jesus,
    The Cheshire crew ; )
    Matt. 7:7 – the King is on your side, Tiff!

Comments are closed.