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  • Written Dec 11, 2011 11:26pm

    Happy Holidays !

    In case you haven't seen it, check out Chris' latest video... its the best Christmas present ever!   


    Yes, it's Christmastime again...
    time for reflection on the reason for the season,
    time for celebrating family & loved ones, the greatest gifts of all,
    time for resolutions and hope for the new year...

    We're going on sixteen months since Chris' life-altering injury.  I've said this before but it bears repeating in this Season of Goodwill.   My overwhelming thought, after living the complicated world of spinal cord injuries and knowing the progress and recovery that Chris has made, is a deep gratitude for how fortunate we have been.  We know Chris is one of the lucky ones.  There are many factors - but a crucial reason for his success is the Chris Leeuw Special NeedsTrust Fund initiated by Scott Jones and funded through your generous continuing donations.  In the beginning we could not know how invaluable this was going to be.  We couldn't know the real extent of the injury, the many complications, the litany of prescription medications, the need for support & adaptation devices, the ongoing doctors and specialists and therapists involved, and the glacially slow rate of recovered function that is inherent in a spinal cord injury.  The cost of Health Care is inordinate, even with Insurance, and it is something that will continue to be an an added burden for Chris.   

    There is another reality we could not know, something that is difficult to deal with on many levels.. it is the heart-wrenching continuing battle facing anyone afflicted with this injury.  From day one we have been in constant disputes and appeals with the Insurance Co. just to get the help that he is due, let alone any extended help that is unquestionably imperative for recovery.  It is a sad truth that the therapy offered for a spinal cord injury is the same as for one with any lessor injury, say a  broken hip.   That is why I say I will never look at someone in a wheel chair in the same way again.  That is why Dr Dale Hull's Foundation & Clinic, Neuroworx, is such a gift - and we are indeed fortunate that Chris is able to continue this therapy.  The only option for too many is to go home after six weeks of acute rehab, teach family members to be caretakers, and adjust to minimal functioning - which is what they offered to  us in the beginning.

    This extended outpouring of love and support and encouragement from all of you, dear family, friends, and even strangers, has meant everything to us...

    you've held us up and continue to be a source of comfort and yes, joy for our family...
    and certainly our hope for the future. 
    This is surely what Christmas is all about...
    God bless you Every One!

    Wishing you and yours the merriest Christmas ever and much happiness in the new year!

    -from the Leeuw family

  • Written Nov 24, 2011 11:17am

    Happy Thanksgiving, dear family and friends.

    It is hard to fathom we are going into our second year, still trudging down this long, hard road.  As in all struggles we have had our highs and lows.. we have tasted every emotion.   We have gone through all the stages of grief in dealing with a catastrophic event and a tragic loss.

    We often talk about where we were a year ago.. back at Westside....
    nursing aid woes, major bathing & shaving routines, catheters and bowel programs, navigating by wheel chair, still drinking thru straws & being spoon-fed (most meals brought in by family as food trays were grave), battling UTIs and serious staff infections one-after-another.  Sometimes it doesn't seem real, rather like a very bad nightmare... we have come so far.  There are no words to describe our gratitude and relief at the progress Chris has made.

    But realistically that doesn't tell the whole story.  Now that the horrors of our worst nightmare are over, we are still dealing with difficult realities, at another level... I think that's only human.    As we continue to inch forward, with each achievement there are new goals...the bar is raised, the struggle continues as heartfelt and difficult as ever.   There are inevitable low spots... patience wanes, determination falters, spirits sag.  He is still plagued with monumental everyday soreness, fatigue, and now huge blisters on both big toes, which has put him back in the wheelchair.  He calls his an "aged" body especially every morning, tight and stiff like nothing we've ever known.  At age twenty-nine, I guess its only natural to mourn the able hunky guy he once was.. his active life-style and his ability to "do anything" is a close memory.  Along with the loss of function, more importantly, is the loss of personal identity and loss of confidence in everything you are and everything you wanted to be.

    He is struggling with that right now.. he is comparing himself to friends. 
    "Not only am I not where I thought I would be personally and career-wise..  now I feel so handicapped  on top of it all." 
    It is a new low.   Dr Dale has said that it is all a part of the journey.. and something that Chris will have to figure out and come to terms with on his own.  He will do it... and be better for it all.  But the process is agonizing.. it will not be hurried or come easily.

     Mom has to come to terms with it too.. sometimes at any unexpected time, it will wash over me again, the unfairness of it all.. the sadness... the meaninglessness
    ... but then I remember vividly a time when I was dealing with a new and weakened body after Chris' emergency birth.  I remember going to Target with my mom and cousin Carol for my very first excursion and being overwhelmed with fatigue, bright lights, and difficulty focusing with a peculiar lessened eye-sight.  I took a break and went out of the store to a park bench where I sat alone, sobbing, head buried in my hands.  When I looked up, I saw through my tears a blind man waving a red-tipped cane in front of him back and forth as he entered the store.  That was IT for me... it was like a wake-up call or message from above.  I was immediately up-lifted with a gratitude that dissolved all my self pity.. afterall I had a tiny, but beautifully healthy baby boy and  the eclampsia that afflicted me had not damaged my mind and body.. I knew how very fortunate I was.  Chris' loss today is definitely much greater, but I hope the day comes soon when he too can feel more gratitude for what he does have and less heartache for what he has lost.

    We are trying to keep busy.  Chris is busy this time of year with football, football, football.. a couple of fantasy teams and conversations every day with other fantasy fanatics - thank goodness for internet and cell phones.  He has also done some writing... good stuff about his personal "story" and also starting up his blog spot again with the Dolphins (check out his latest article: google, "Phin Phinatic").  Books & movies occupy much of our spare time - thank goodness for DVDs and Salt Lake's Gateway Mall theater only 10 min away.  Last weekend we visited a museum on the Brigham Young campus in Provo..and a beautiful new $100M Natural History Museum on thirteen acres just opened in Salt Lake City, showcasing the state's Native American story, the rich archeological history of the state, as well as the making of it's physical history and natural beauty.  After church last Sunday & a football afternoon, we saw the Univ of Utah's production of "Hair"- it was strange seeing the familiar hippies of "a few years ago" now cultural icons of a historic period in time - lots of great sounds with a rousing "Let the Sunshine In" finish that brought us to our feet.  I also look forward to my weekly bridge class-&-play nite with a new friend and am working on some crochet projects that I hope to finish before Christmas.

    One of our favorite happy pass-times is spent with our newest and bestest friend, our very own Baxter-boy...  more commonly known to Chris as "Buddy, Fuzzy-face, Baxterino" and to me as "Lover Boy," "Sweetie Pie",
    "Baby Cakes", etc - he is absolutely the most adorable little guy EVER and always puts a smile on our face, our favorite souvenir from Salt Lake - we both luv him to pieces & don't know what we did without him.  He has also promoted a healthy routine to my day as we now take an extended (at least a mile) morning walk EVERY day - first initiated by my brother when he was here a few months ago - thanx bro.

    And I have to say we LOVE Salt Lake City... love the mountain view we take in every day back-&-forth to Neuroworx (the massive Wasatch peaks are familiar loyal friends, now once again showy & glistening with covers of snow), love the excursions we take every week-end exploring canyons & lofty city views here or in nearby Provo or Park City.  It is such a gift that we are able to experience this magnificent grandeur long-term & in depth.

    We are ever-so-looking-forward to our Thanksgiving visit from Gene & Allison.  We will be served a complete Thanksgiving dinner - with all the trimmings - at one of our favorite dining spots, rustic Silver Fork Lodge near Brighton Ski Resort and beautiful Silver Lake.  The drive through Big Cottonwood Canyon and the Wasatch National Forest is top of my list of favorite places.

    This Thanksgiving we want to wish you a special holiday, hopefully gathered with family and loved ones... & many thanks for your continued notes of love & support.   I'll close with a verse that is stucking with me - from a stone in my neighbor's garden.

                       Some people look for happiness everywhere.
                           Other's create it where-ever they are.

  • Written Oct 17, 2011 1:50pm

    First of all, Chicago was GREAT!
    I have never seen Chicago so beautiful.  Sunshiny splendor everywhere.. lavish flowers and autumn color bursting in City Parks and in planters lining city sidewalks. And following Allison on a morning practice run (friend Judy & me walking), we discovered a Riverwalk down to Navy Pier & Lake Michigan.. and then of course the ever magnificent towering skyline.   Downtown was literally buzzing with excitement, 45,000 participants in the Chicago Marathon from all over the globe...and with 100,000 spectators there were cheers and tears and hugs of encouragement and accomplishment all around.

    It was a thrill being there for Allison's Marathon Run with Team Reeves for the Dana and Christopher Reeves Foundation.. from a mother's perspective - pure pride and pure joy. 
    She DID IT! 
    ..and in absolutely great form, bleary and beaming and ready to celebrate with sushi and her favorite Thai food after her triumphant run.
      I have come to appreciate this new-found sport - it is an exhilarating experience for the spectators as well as the runners, made especially so when my sister Rhonda's kids, the Fishel cousins, run too, as my nephew Scott did on this one.
    but why were MY calves and knees sore the next day? .. well, Judy & I did some marathon walking & exploration of our own.

    Meanwhile, back at Neuroworx...
    it was a sad week as we said good-buy to our next-door-neighbors, another Neuroworx family who are heading back home to South Africa... such a warm and active and fun-loving family, we already miss them dearly.  Before Jared's accident he had a single-minded plan for his future.  He was a passionate and successful motorcyclist, an up-and-coming contender for top racing awards.  But fate stepped in and altered his path.

    When he first came to Neuroworx I told him he would be a natural & should train for wheelchair races.
    "WHEELCHAIR?" he responded almost indignantly, "I want to be a motor-cross racer!"

    That was six months ago.
       He has been working his heart out every day.  Although still in a wheel-chair and with limited use of his hands, Jared has made remarkable gains in strength and adaptability.  Additionally he possesses an inner strength and energy and warmth that will serve him well into a successful future.  His mother told me several weeks ago that it was Jared who told his parents that they needed to accept the reality of his situation.  His plans now are to pursue a career in psychology.   He is twenty-one years old, with maturity beyond his years, and already an inspiration to many.

    And Chris is continuing along on his own hard-fought path.  He knows he is one of the fortunate ones with the gains he has made but that doesn't mean the road is easy or without frustrations... and it doesn't mean he doesn't miss his old life or worry about the future.  A recent newscast told the dreadful story of a child molester.

    "Why don't spinal cord injuries happen to child abusers?" he said only half jokingly,
    "I would have been a great dad."
    He knows comments like that rile me.
    "You ARE going to be a great dad," I tell him with all sincerity, "there is absolutely no reason why you can't." 
    I do believe with all my heart there is some special someone out there who will appreciate all his deep and kind and fun-loving qualities and who will love him as much as I do.


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Healthcare Facility

Indiana University Health Methodist Hospital
I-65 at 21st
Indianapolis, IN 46206
United States