April 5, 2012

  • A busy week for Hillary

    It’s been a busy week for Hillary….as is every week.  She begins her days getting ready for a day full of therapies.  While each of us have our own morning routine and set of schedules, Hillary’s routine before heading out the door often takes her 2 1/2 hours or more.  It’s not that her morning routine is much different than for rest of us – a quick bite to eat, shower and dress for the day.  But for Hillary, the motor side of her brain just won’t let her engage and progress as quickly as others.  Every step is slow and deliberate, but even if there was no physical challenge to her gate and pace, it’s her brain that just can’t cognitively help her engage quickly. There is no sense in rushing her because it just makes no difference and only frustrates her.  And while therapists continue to work with her to narrow the timeline of readiness, there remains little progress to date on that goal. But she’s not giving up.

    Each day she has a full schedule of therapies from OT, PT, Speech, Counseling, and more.  As she says, “her time does not feel like her own”.  But here is something that IS Hillary’s own:  The chance to save lives from distracted driving.  Please watch this 8 minute documentary provided by Kentucky’s Office of Highway Safety and our joint mission to save lives.  Saving lives is Hillary’s heart’s desire.

    Please spread the word for Hillary.  Her 8 minute documentary link below

    http://youtu.be/x6EqkIron3s

     

April 1, 2012

  • Don’t be an April Fool–One Text or Call Could Wreck it All

     

    April is Distracted Driving Month. Instead of an April Fool’s Day target, I’m going to refuse distractions and focus on driving. KY launches its Public Service Announcement tomorrow (April 2nd) featuring Hillary and the dangers surrounding texting and driving.
    “PARK THE PHONE before you drive. Copy and paste this in your status if you or someone you know has been affected by texting and driving. www.distraction.gov
    Distracted driving is unsafe, irresponsible and in a split second, its consequences can be devastating. Click here to learn the facts about distracted driving

    www.transportation.ky.gov/highway-safety

    One would think our family would never allow ourselves to be distracted drivers—especially by our cellphones.  As a caregiver family surrounded every single day with the aftermath of the horrific results of texting and driving, we should be steadfast in turning off cell phones before turning the key in the ignition.  We know all too well that it takes only a second to change lives and destroy dreams from a distracted driving car crash.  This week after just sending some requested pictures to the KY Office of Highway Safety for their Distracted Driving Campaign, I hit the road for Jackson, MS. Within hours after one of my usual popups, (known as Shawn thoughts that MUST be delivered immediately before Shawn forgets), I broke my own pledge to never text and drive.  After all, it wasn’t really texting and driving since I was armed with a phone which allows voice texting.

    I pushed the button to state my text and requested a voice review of its content before sending it.  When I heard the computer read back my message, I realized something needed editing for clarification.  I peeked at the text to see where to edit and within seconds something went terribly wrong.  I heard the sound of the warning treads on the side of the road so quickly that my brain was unable to discern what I had heard.  In one second’s time I had literally sliced through the pavement’s safety ruts at such a tight angle (and at a high 70+ mph) that the long and slow recognizable “thump—thump—thump” sound wasn’t in play.  Once discovering what was happening, I quickly turned my wheel to the left, hearing the same quick sound again– though also realizing I had overcorrected and my car was now tipping heavily to the left becoming off balance. Thankfully within the next seconds all four wheels were on the road and my car was driving normally down the highway; though its driver was not.  I was overcome with what had just happened.  I not only knew how lucky I had been, but I was despising myself for the irony of my hypocrisy.  Beyond all of that, I began grieving for my daughter and what she has been through and the frightening realities she must have felt in the moment of her crash as her car began to roll; ultimately throwing her out on the opposite side of the interstate.  I grieved as I replayed in my mind watching therapists try to teach her how to hold her head up the first time they positioned her upright on the side of the bed; therapists flanking her on either side and one in the front as each try failed and her head swiftly dropped back down to her chest.  I cried over these last 4+ years in the aftermath of a texting and driving car crash and reliving the milestones that required her to have the strength of an Olympian as she took those first assisted steps and the steps that even now are difficult for her. 

    Once back on the road with blubbering behind me, I realized that sadly, like everyone else guilty of this habit, I thought I was a little better at a quick glance at my phone than others.  With certainty, I now realize eventually if you text and drive, you will crash. 

    And what if you do crash after a distracted driving collision?  Chances are you will die.  In the past, most texting and driving stories highlighted to the public only showcase the loss of life.  But what if you don’t die?  Is it OK to say there are some things worse than death?  In this house we are Christian believers and face every day with the certainty of God and Heaven.  Hillary’s only memory from the day of her crash is three angels who mentally spoke to her and instructed her to lift her arms and rise with them—telling her she would live.  No doubt for us her crash underscores our belief in God and His miracles and also allows us not to fear death.  Perhaps only the families living in the aftermath of distracted driving and traumatic brain injuries will understand what I’m about to say, but the answer from this side of Hillary’s car crash is “Yes” and “No”.

    So it is with that controversial question that we will do our best to fulfill the KY Office of Highway Safety’s request and honor by openly sharing the impact and reality of distracted driving car crashes as candidly as possible.

    On September 1st, 2007, the night of Hillary’s car crash, while sitting in the Trauma Unit at Vanderbilt University Medical Center, I don’t know what we would have said to answer that question as we watched our daughter struggle for life except to ask our God to keep her from pain….from harm….and deliver her…back to us or to His arms.  A call for prayers for Hillary was launched and miracles happened and for that we will forever be thankful to so many literally around the globe.  In the following days and weeks, we probably told ourselves “she’s going to be OK….different, but OK” and a life like “this”, (whatever “this” was), would be enough for her.  It certainly would be enough for us.

    Months later and over the course of that first year as Hillary had to struggle to relearn absolutely every human body function from swallowing to toileting to eating long before walking, I know we would have still said, “…with life we still have hope.”, (though everyone of us knew Hillary would rather have died than to live in this way in those months).

    The one year anniversary of her crash had us facing less physical concerns (though they were still enormous) and more emotional/cognitive disabilities.  This is when our family had to face the reality that we were no longer able to help her reach higher levels of her recovery and turned to a residential neurological restorative rehabilitation center.  At that point, Hillary was more often than not in a wheel chair and had progressed to maybe half way on the Rancho Cognitive Scale  http://rancho.org/research/bi_cognition.pdf  She was devastated to be “pushed out of her own home by her own family” as she stated multiple times per day.  And as a family, we were exhausted and broken hearted.  I’m not sure of our answer to “the” question in those days because it was so hard to watch our severely injured daughter go through the emotionally charged state she was in, while still struggling with horrific physical challenges.  

    One year later, Hillary was facing another surgery but on her way back home and hope was up and down—often multiple times per day at the Coltharps.  Hillary’s days were fully loaded with therapies from speech, occupational and physical therapies as well as counseling and behavior therapies due to the significant injuries in many, if not all, areas of her brain.  This was also a time where Hillary began to “wake up” more but with new awareness that the event area of her brain was destroyed.  In essence, right along with the rest of us Hillary discovered she was struggling from likely permanent amnesia.  While she could give you details about every house we lived in over the years—every school—maybe even the floor plan of many restaurants, she has no memories and stories within those buildings.  The same is true for family and friends.  While she has our faces probably from her childhood age to about 5 years prior to her crash, there are no stories to coincide with the profound love she has for many of us.  Bless her sweet and broken heart.  I can’t imagine what life would be like without these memories.  It’s one of the reasons she so desperately wants to always go places and find friends outside of her brain injury world of therapy.  She wants to code new memories into the event side of her brain so she, too, can treasure what is the most precious and priceless of all for the human spirit….cherished memories with our loved ones.

    So what about today?  How would we answer that controversial question?  We would answer it with hope restored!  We see a young woman who is closer every day to a life that will not be the life “pre-crash Hillary” would have chosen, but one for the record book of miracles. Given the severity of her injuries, Hillary should not be alive—much less—a functioning viable human being.  She loves her son…loves her family…and loves and misses her life and friends from before her crash.  There are no profoundly clear and distinct individual memories there—only the knowledge of those days and the essence of who she was, the love she had for each of us, and the lifestyle she lived energetically.  And she grieves for it….for the innocence of our family’s ignorance back then having no knowledge of what trauma can do to families.  I think we all miss the deniability of how hard life can be given the one wrong second in life that can change everything.  But it is Hillary’s willful strength and her steadfast belief in her own ability to find a way “out” of brain injury that has taken her this far.

    Hillary is our hero and a testament to determined survivorship through faith in God in the darkest of circumstances.  And all signs point to a pretty good road ahead for this young woman.  She has an abundantly grateful spirit for your steadfast prayers for her recovery and is ready to give back so others will avoid the horrible journey of survivorship with traumatic brain injury and other distracted driving outcomes.

    Tomorrow—Hillary will tell you that in her own words. 

    Thank you again, from the bottom of our hearts.

    XOXO

    Shawn

     

     

March 25, 2012

  • One Text or Call Could Wreck it All: The Hillary Coltharp Story

     

    Just days before Hillary’s horrible car crash on I-24 in September of 2007, a friend and I spoke about the power of the “The Prayer of Jabez”.   In its small prayer book form, “The Prayer of Jabez” (1 Chronicles 4:9-10) was a best seller at the time; creating in essence, a movement across the globe.  As my friend and I spoke of the exciting message of this simple and straight forward prayer, we both committed to weave Jabez’s prayer into our daily lives.  In his prayer, Jabez asks God to bless him and extend/expand his territory; asking God to let His hand be with him while keeping him from harm.  The “Jabez Movement” had sparked numerous stories of ordinary people committed to daily prayers of Jabez; suddenly finding themselves in the center of doing miraculous things—all in a way that would underscore God’s love and certainty.

    It’s Sunday in Paducah, KY, and there was no way our family could cross this new intersection in the road ahead to share Hillary’s story with so many, than to ask God’s hand to be on us.  The KY Office of Highway Safety has given our family the honor of sharing our voices to April’s Distracted Driving Month and beyond.  We thank so many of you for helping support Hillary and Max and the rest of our family with your prayers and your friendship and understanding over these last years.  Now we ask you again for your prayers that Hillary’s story, through a KY Public Service Announcement and a future documentary, will extend again “beyond her territory” to save lives from the pain of distracted driving and the ultimate destructive and deadly story endings it causes.  In April, our mission for this site will be to educate drivers on the impact of distracted driving.  And far beyond even our wishes, Hillary hopes her story and the journey in her “rear view mirror” will be the motivation to prevent texting and other deadly distractions while driving.   

    One Text or Call Could Wreck it All:  The Hillary Coltharp Story   and The Road Ahead…

     www.distraction.gov

    XOXO

    The Coltharps

     

September 2, 2010

  • Happy “Re-Birthday” Hillary–Three years today

    It was three years ago tonight when Hillary had her terrible car crash.  I’m so thankful that we didn’t know then what I learned just last week from Hillary’s neurologist: At the time she had only a 5% chance to live.  I didn’t know then just how hard life would be for her or for our family.  But that night I gave her to God and He has been slowly and carefully (steadily) giving her back to me….to us….ever since.  As so many of you said today, “She has come such a long way!” 

    We have finally put the old family houseboat back in the water this summer and it has been wonderful for everyone…each in a different way.  But most of all, I think it has given Hillary a real sense that life is somehow coming back to “normal”–which can only mean she is getting better.  She is climbing the ladder (with help) to the top and she rides but also drives the wave runner –always with a buddy right behind.  She has begun hippo therapy to improve her gait, and once overcoming her fears when getting on the horses, she sincerely has a great time there.

    Just recently, Hillary was awarded a grant to allow her independency with her very own construction project and ultimate apartment….but within safe distance of her family until she is ready to move on.  The area director for the grant had suggested Hillary write a letter to the decision committee expressing her interest and goals around this incredible opportunity.  I believe she must have written the letter in cursive, because I was unable to find it today.   I wanted to share her beautiful words tonight in honor of her three year survivorship.  While I can’t remember all she said, I will never forget the way she began the request.

           “I was born on November 17th, 1980…….and again on September 1st, 2007″  

    I know she spoke about the three angels that had stayed with her that night on the side of the road, and about her desire to (quote) “return to ‘me’…to work and to take care of my son”   I also remember at the time we were working on the grant package, Hillary had moments of concern stating she wasn’t completely sure she was ready to make such a move. She felt she wasn’t physically strong enough to “make it on her own” in this transitional independent living space.  With that, Paul had said, “You may not be ready right now, Honey, but within the four months it takes prior to the awarding of grants, to the one year the grant covers for distribution, you will be well enough and ready for this.”  And he was exactly right.  She is not only physically ready for this change, but she is emotionally ready and thrilled about it.  Construction may begin any day!

    We have learned so much in these three years.  Our family and friends and the circumstance of TBI itself have taught us patience, strength, true sorrow, and the meaning of changed lives–some good changes and some unimaginable.  But most of all the last three years have shown us God’s capacity for miracles, grace and love. 

    To our beautiful daughter, sister, mother and friend–

    Happy 3rd “Re-Birthday” Hillary!   

    WE LOVE YOU!

     

     

April 11, 2010

  • Happy Spring!

    Happy Spring to All!

    And once again, a picture is worth a thousand words.  Hillary is getting so much better!  She is working hard every day in therapy and beginning to focus on climbing a ladder so he can get back on the family houseboat. 

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    I think one of her favorite things right now is tossing out anything that reminds her of the darkest days of brain injury.  She is looking ahead….every day!  Thanks for your continued prayers….always!

    XOXOX

    –Shawn

January 30, 2010

  • Please join Oprah’s No Phone Zone

    Happy New Year!

    Brrrrrrrr!  The snow is piled high outside for so many of us so let’s take the day to do something GREAT!

    NPZ_HomeBadge

    Please click on the link below and join Oprah’s No Phone Zone.  Take the pledge and let’s change the world with Oprah! 

    http://www.oprah.com/oprahshow/Distracted-Driving-What-You-Dont-See#comments

    Hillary is doing so well with therapies.  She’s busy all day almost every day beginning with her favorite stop of the day, PT with Rob Caturano.  He’s truly getting our girl off her cane and giving her the vision that she will be “walking with style” soon.  Rob just “gets her” and was “Hillarized” the first time he worked with her.

    She’s very happy to be home and we still hear Amy Winehouse singing the words , ”No, No, No” to in house rehab when we look at her. She is beyond blessed to be surrounded by caregivers who are perfectly trained to take her through her daily routine from each therapy stop to the next one.  

    Hillary is beginning to connect her personality now with her personality pre-crash.  She recently stated to Ashley and then the rest of us, “I don’t think I had a lot of patience before my crash, did I?”  She went on to state patience seemed even harder to come by now.  (All natural self awareness discoveries of TBI and important to her cognitive milestones)

    She’s also recognized that what holds her back physically is fear…and tied completely to her brain…perhaps not at all physical imparities.  Again, a self awareness discovery that will guide her the rest of the way.

    So once again, and just now, Hillary is asking all of us to take the Oprah No Phone Zone pledge.  It is her mission to change lives and prevent any more heartbreak from texting and driving.

    Hillary says, “Don’t be inTEXTicated!”    

    Thank you God for Rob and all of the healers of all kinds you continue to bring into Hillary’s life.

    XOXO

    Shawn

November 16, 2009

  • Happy Birthday, Hillary!

    Tomorrow is Hillary’s birthday. And even though we will eternally celebrate two “birthdays” every year for her now, November 17th is the one that heralded her birth twenty nine years ago.  How blessed we are to have her here to mark that special day for our family! 

     

    And there could be no better birthday present than taking away one of the greatest birthday gifts she will ever receive.   Yesterday we dismantled the lovingly built wheelchair ramp that was installed for her on her birthday homecoming two years ago…on her 27th birthday.

     

    I remember Paul and I being completely overwhelmed with emotion when we looked out our front window to see a group of men we didn’t know—gentlemen from Reidland United Methodist Church–constructing this perfect gift for our girl’s safety.  We had been scared to death and totally unprepared for what was ahead including her equipment needs.  But there they were, tangibly putting His gifts to work in His honor and glory.  (How many times I thought about my lack of commitment to my own Christian service responsibilities as I assisted Paul in dismantling this beautiful ramp.)

     

    And as wonderful as their gift was, (and always will be), it was a so exciting to now give her the birthday gift of our front porch…sans wheelchair ramp.  She no longer needs a ramp since she only uses her chair for long distances. Additionally, she had self imposed a goal of being cane free for her birthday, and while every step is methodical and looks as though all her thoughts and focus must be on the next step, she has succeeded! 

     

    And in numerous ways her best birthday gift(s) ever—the building and then dismantling of that ramp– continued to be celebrated all day long.  We had planned to attend church but in the midst of getting ready, Hillary had an emotional meltdown.  She was so sad about the way she looked and cried about what she is able to wear in light of her physical challenges.  It was just a rough morning.  Paul suggested we have our own “service” at home.  And with that, we devised a plan to have Hillary read a youth Bible story and see if her short term memory would allow recall of the story.  The pages also asked discussion questions at the end.  

     

    Perhaps this exercise helped recall some of her old memories of Bible stories as well. But no question, there were details of the story her short term memory quickly stored and then shared.  And as she elaborated on one of the discussion questions regarding modern day application of its message, Hillary said, “Just like the lesson Moses learned about trusting God to help him with his fears, God has given me the strength to face mine.  God has helped me do the things I didn’t think I could do like getting out of my wheelchair and getting off of the cane.”    She went on to ask if she would need some certification to assist in teaching Sunday School some day; stating for the 100th time that she needs to give back to God and that in her heart she believes He saved her for some reason and some purpose.  And then there it was again…..she told us the story of the three Angels who had come to her on the side of the road….every detail still intact and exactly as she had told it to us when she was first able to speak.  It was a great Sunday morning service!

     

    And leaving our day there would be so beautiful….so perfect ending….but it wouldn’t speak to the families of brain injury in truth who will face days on their journey that are less than perfect.

     

    I had been eyeing the familiar Walmart photo center envelopes all morning. Hillary had recently discovered these “old” disposable cameras and we were anxious to see what memories had been locked inside them and for how long.  Somehow we had forgotten to look at them when we brought them home the evening before.  I was sitting at the table with her when we began looking through each package.  The first set included pictures of Hillary and her caregivers at CCS—the brain injury residential facility where she had lived for nine months.  Included were pictures of Hillary and one of her best friends, Amanda, who has suffered an anoxic brain injury—just eleven months after Hillary’s TBI.  They were hard pictures to look at for some reason, but I tried my best not to let her see inside my heart as I passed each picture on to her. 

     

    And then I opened the third package.  This one hit me like a lightning bolt.  They were pictures of our family on our houseboat…..pre-crash.  I began holding my breath before turning over each picture knowing what might be coming next.  And there she was….sitting on one of the boat’s sofas—cocktail in hand—and smiling her beautiful smile.  There was Hillary.   In one second’s time I began grieving from inside my soul and out.  I cried so quickly it even surprised me.  Paul knew without looking what I had seen and though he didn’t say anything, I could feel him already bracing himself as the picture would pass from me to Hillary—and then on to him.  I was so ashamed of myself for letting the site of her hit me in this way.  What a joke I was to be agreeing with certainty only minutes before Hillary’s insight into completely trusting God and finding purpose in our trials. 

     

    But soon she calmed me.  She saw the picture too…..and she said, “It’s OK, Mom.  I know you are just sad because we’ve changed.  I understand and I feel the same way, but I believe I am getting better.  No, I AM getting better. And I may be a better person.”  She passed the picture on to Paul and waited for the next one.

     

    And then I looked out our front window again—something I would do all day —and looked for what was gone to find truth in what was ahead and promised in God’s word.  Hillary’s birthday gift wheelchair ramp was no longer there.  When it was built, we had truly trusted God to take it away some day….and He had. 

     

    And in every worship service we have in our home church our congregation always says, “Thanks be to God!”

     

     

     

    IMG_0309 IMG_0312

     

    From our writing almost two years to the day:

    All the while, outside our front door is a team of wonderful Christian men who we don’t even know building a beautiful ramp for us.  Joe, Tom, Keith (Thank you Keith! You and Outback have done soooo much!), TR, Shane and Russ of Reidland’s Methodist Men are miracles to us…THANK YOU!!!! (Thank You is just not enough)

     

    And it still isn’t!

October 31, 2009

  • Measuring Progress

     

    IMG_1481

    I can’t remember the last time I wasn’t measuring something about our lives and Hillary’s progress on this brain injury journey.  Our first night was filled with them.  “How much longer before we get to Western Baptist Hospital?” I asked Paul and Billy as we rushed to “get there in time”.  I had been as controlled as I could possibly be then and on the phone with the ER nurse who kept calling me “Mom” as she empathetically encouraged us to “hurry …..but safely”.  I knew she meant it was doubtful we would get our chance to say “Good bye”. 

     

    After arriving at the ER, our cousins Jesi and Jayla, (who is also a neuro nurse), told us Hillary was a 3 on the Glasgow Coma Scale.  (I remember thinking, “Well that’s better than a 1!” (Though I now believe if you check all three levels for GSC and compile the cumulative total, nothing could “add up” any lower or any more severe than level 3.)

     

    Within the next two hours, while on our frantic two hour drive to Nashville, I would ask Paul how long it would take Brittany to arrive at Vanderbilt’s ER.  Brittany, who lives in Nashville, was taking the reins for all of us and representing our family circle by waiting for LifeFlight and her critical sister at the other end.  I remember feeling so relieved that Brittany was there to “catch her”.

     

    The next days, weeks and months would measure Hillary’s ability to come out of the coma—essentially determining her cognitive level— through the Rancho Los Amigos Coma Scale.  One of my most vivid memories of measurement from those days was watching her team take a ball point pen to the bottom of our daughter’s foot so they could determine her “appropriate” reaction to pain. So many hours and days the measuring would leave us a little disheartened as she failed to react “appropriately” to what should have been so uncomfortable.

     

    I remember asking for your intercessory prayers so Hillary might move into the next Rancho level, as she suffered from the various challenges presented by her current state.  It would also be a cognitive/physical ability measurement that would determine where she would be admitted for rehab; ultimately guiding our way to Cardinal Hill.  It would be those same measurements that would eventually lead her home on her 27th birthday—November 17th, 2007

     

    And every kind of measurement continues to be an important part of Hillary’s recovery process as her therapists set and then upgrade her PT, OT benchmark performance tests. Perhaps it is the measurements for her long term and short term memory improvements that are the most exciting of all the litmus tests we review week by week and month after month.  Frankly, I don’t see most of these tools for determining her progress fading out of the picture for any of us in the near future.

     

    But there is one measurement I’ve been using for the last few months that I hope I can stop using; and I have to thank another brain injury survivor family for the relief I now feel about my decision.

     

    When we arrived home from Cardinal Hill Rehab with Hillary, now almost two years ago, there was a book waiting on our doorstep.  On the inside cover, the family who knew our path ahead much more than we would allow ourselves to see, had written a wonderful note inside encouraging us to read the book’s story of a woman’s recovery from TBI….and from her own perspective.  I had tried several times to read the book, but unsuccessfully.  Sometimes the words would just fly off the page; either due to fatigue or because I wasn’t ready to believe the road ahead.  (I think the latter.)

     

    But this week, I picked that book up again and began looking at my daughter’s journey with new perspective.  I took a hard look at her pride, her heartbreak and her determination through the words of another woman.  It was as if Hillary had written the book herself, as many of this woman’s resulting challenges were in perfect concert with our daughter’s and our family’s experience.  So many of my questions were answered; and thanks to our friends’ loving gift, I have been able to talk with Hillary about things—her feelings and mine—like we haven’t done in two years.

     

    I can’t imagine what she has been through.  I can’t imagine what has been taken from her….but I am trying.  And thanks to another woman’s journey, I am going to try my best not to measure Hillary’s progress by how much of her life is getting back to “normal” and who she was before her traumatic brain injury.  It wasn’t fair to any of us….but most of all, it wasn’t fair to Hillary. 

     

    Hillary is never going to be exactly who she was before.  I used to hear those words from someone else and it would cut me like a knife.  I wanted my daughter back exactly as she used to be, although knowing that was unreasonable.  Even if every single neuro pathway re-wires itself into perfection, Hillary would and could NEVER be the same based on her life experiences from the last two years.  No one could!  But that doesn’t mean she is going to be any less of a person—any less delightful, loving, beautiful, funny—and yes stubborn. (OK…some things ARE the same and escaped the “firewall of brain injury” a little faster than other personality traits.”)

     

    She is still Hillary.  But I am not going to insult her intelligence, or yours, by suggesting she, and we, aren’t grieving the loss of what life was like before her brain injury.  We are and may grieve for pieces of that time forever!  Yet that doesn’t mean life isn’t likely to get even sweeter in the future.  It can—and coupled with our new changes of life and lessons of love from brain injury—I think it will. It’s just not going to be the same.  And realizing the best part of where we are going as a family is ahead of us is exciting!   

     

    Starting now, I will do my best to measure everything about Hillary’s progress from the night I first began measuring things around brain injury.  What is important is that Hillary’s progress from 7 PM, September 1, 2007—Labor Day Weekend—is phenomenal!  It could only be God!

     

    Her son recently talked to me about his Mommy’s progress and yes, was measuring a little bit himself. At the end of his long presentation he said, “She doesn’t get better every week…she get’s better every day!”  Out of the mouths of babes…..

     

    And here is another measurement of where we are on the journey—and still on the scenic route, (though incredibly bumpy from time to time):

     

    For the last two years, our oldest grandson had asked us if we would make it possible for him to be the “Grim Reaper” for Halloween.  As you might expect, it was JUST a little too close to home and we struggled to get out of that request.  We won those two years—he didn’t.

     

    This year he was victorious! 

     

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    The Grim Reaper

     

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    Vance–Nothing scares this kid!

     

     

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    Happy Halloween!

     

    XOXO

    –Shawn

September 29, 2009

  • In Honor of our Girl–Honoring Others

    In Honor of our Girl….Honoring the Staff and Families of Vanderbilt 10 North

     

    I was on the phone yesterday with Ashley when she casually mentioned the things she had going on that morning.  Among her many errands she had stopped by our old home away from home….Vanderbilt’s 10 North Trauma Family Waiting Room.  She had told me some time ago this “stop” would be a regular on her list of things to do each month now that she had decided to become a stay at home Mom.  Apparently she walked off the elevator with an Edible Arrangement in one hand and a lot of hope in the other for the many families in wait there.  She wanted to let them know it had been two years since her sister’s near fatal car crash and resulting traumatic brain injury. And like them…those broken hearted families and friends….we had been “there” too.   She wanted them to know we had been in those same recliners, day after day, night after night; and we, too, had held our breath every moment waiting for some tiny sign of progress and hope for our injured angel.

     

    I think Ashley was surprised to see the pictures of her sister hanging on the wall there…especially the one with Paul from those very early days in the Unit.  But as she pointed to those painful images of our past, she was able to also share so much about the days of Hillary’s recovery journey and she gave them what they wanted and needed ….she gave them hope.

     

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    And while the hope she gave was not a promise of the ultimate healing of their patients, she certainly assured them their loved ones were in the best hands in the world….Vanderbilt’s Trauma Team.  And then she told them Hillary’s healing was also the power of prayer given tirelessly from our loved ones –our family and friends who continue to ask God to surround her with His power and strength every day.  Soon after Ashley began sharing our family’s story of hope and comfort one young woman asked her, “Could I hug you?”  The hug was just as important to Ashley.  She knew it was really a hug meant for Hillary.  (I know it was a hug meant for both of them.)

     Zoom Zoom, huh?  We are so happy to have our girl

    (Images used in VU TSN.org posters)

     

    She shared the importance of Vanderbilt’s Trauma Survivors Network with the families…she shared Hillablog with them…told them the best way to “out fox” the Vandy elevators…suggested links to a couple of questions around “next steps” legally for their families (things we would NEVER have thought we would know prior to 9/1/07), and then dropped the important chocolate covered strawberries off to the nurses before heading out.

     

    It had been a couple of rough days last week, taking us back to places we shouldn’t have been before….and certainly not now.  Emotions had run high again and at a time when we wanted to celebrate Hillary’s homecoming in every way.  But when Paul and I discussed this powerful visit our daughter had made in honor of her sister, our family and our loving friends, we both became so emotional and it was the release of everything negative and the victory for everything good.  We know with our whole hearts how powerful those minutes—her words were for those aching families.  And we had lost sight of what truly mattered in the last few days.  Ashley and the families and staff of 10 North had brought us back again.

     

    When we told Hillary about Ashley’s visit she said, “I have to go see those people again and I want to visit with some of the families.  How is Brad Gardner…Isn’t that his name?  Do you know?”  I thought my eyes would pop out of my head.  Brad had been a TBI patient many months ago that both Hillary and I had visited.  She had remembered him and our visit. 

     

    Our girl is getting well…a little more every single day.  Our friend Lacy White had visited with Hillary on Sunday and as we talked about Hillary’s progress she said she had spoken to someone who asked about Hillary’s cognitive and physical abilities.  Lacy told the person, “If you have seen her from the earliest of months you would be blown away by her progress.”  She went on to say,  “If you have never seen her since the crash and saw her out now you would probably say…”Oh….I just don’t know…..I’m not sure she will ever be OK.”  We agree with her assessment completely.  But she keeps proving to us she will be OK.

     

    So true to our new pop-up format as promised….here is another one.  These continue to help us collect who she is…and proof of how she keeps coming back to us in often unusual ways. 

     

    Hillary has forgotten voice intonation.  She doesn’t remember the natural progression of pitch and voice inflection when speaking.  As a matter of fact, just about a week ago, her speech therapist Emily listed voice intonation as a goal for Hillary…much to our delight!  Last night Hillary asked a question of her dad in a very monotone manner…again, typical of Hillary’s current speech pattern.  I asked her to state it again but giving her example of the natural voice rhythms and pitches most of us use without thinking about it; albeit mine was a little over dramatized.  She immediately asked the question again in perfect ebb and flow (and pitch) of her normal pre-crash speech pattern.  It was AWESOME!  It’s just another proof that the brain must be re-educated so it can re-program what it already knew before injury.  With her love of music, we still believe music therapy will be key to re-wiring this part of her brain to impact her speech pattern.  And while she loves all types of music, we aren’t sure the sounds in rap will be particularly helpful in reaching the highs and lows needed to regain that sweet sound of Hillary’s voice pattern. 

     

    To Ashley’s (and now our) new friends in the Trauma Family Waiting Room, here are some of your requested sites

     

    KENTUCKY

    Kentucky Protection and Advocacy

    www.kypa.net

    Client Assistance Program

    http://kycap.ky.gov

     

    TENNESSEE

    Disability Law & Advocacy Center of

    Tennessee

    www.DLACTN.org

     

    National Disabilities Rights Network/TBI advocates

    Protection & Advocacy for Individuals with Disabilities

    http://www.ndrn.org/issues/tbi/statewatch

     

    Vanderbilt’s Trauma Survivors Network

    MyTSN.org

     

    Brain Injury Association (directory of state associations and advocacy/related state legislation)

    http://www.biausa.org/

     


    Hang in there!!!

     

    XOXOX

     

    Shawn

     

     

September 19, 2009

  • Homecoming Weekend for Hillary!

    Hillary is back home and happy on Hillgate!

    Stuffing wedding hotel bags

    Prepping hotel welcome bags

    Vance and Hillary's son--pretuning for wedding dancing  

    Pre-tuning for wedding weekend

     

    Looking back I think it was while watching Hillary put together the hotel welcome bags the weekend before the wedding that made us realize it was about time for her to come back home.  No doubt it is the overall progress Hillary has made that brought her homecoming to fruition.  In any case, we are watching a very happy girl as she settles back into her “real home” and her “real life” (as she has called it for almost a year now).  And true to her history and family support, Ashley was here to organize and toss out the old “stuff” that Hillary will no longer need at home. 

    When we returned to CCS yesterday to get a few more of her things out of the duplex, everyone who saw Hillary, (friends and staff), saw it in her face:  Hillary was beyond ecstatic to be leaving the CCS residential chapter of her journey behind.  And even though we all agreed this step is just a little early having expected her return to be Thanksgiving week–her one year enrollment date–anyone who looked in our girl’s face became instantly persuaded that going home was the right decision.  She always has been quite persuasive.  Just ask her Dad who spoils her a bit too much at times. 

    Hillary will continue speech and occupational therapy at CCS in its non-residential program.  But she is also enrolling in some additional opportunities including physical therapy and vocational retraining assistance in cosmetology and more!  And blessing of all blessings, Hillary will be able to hire her own companion assistance to provide transportation to therapies as well as any other support needs she requires for her reentry back into society. This program is just another grant benefit provided by Kentucky’s Acquired Brain Injury Waiver and Consumer Directed Option blended services.  And as Hillary would say–now all of us say–”Yippee Skippee!”  

    So many times this week Paul has asked me how many people need these programs that know nothing about such opportunities.  (Most aren’t lucky enough to live next door to a wonderful friend and case manager like we are.  God bless Susan Curtsinger, and all she has helped us uncover for Hillary from the day we arrived back home from Cardinal Hill, November 17th, 2007…a lifetime ago.)  And most survivor families don’t get the honor and opportunity of working with Vanderbilt Trauma as our family has been able to do.  Vanderbilt’s Trauma Survivors Network, http://www.mytsn.org , has helped us better understand the survivor journey and how important it is to connect with other survivor families who are somewhere along the same road of recovery; albeit in different places and with likely different destinations.  After brain injury, speaking with other brain injury families or reading other survivor stories is about the only way to ground oneself in hope and peace.  Sometimes hope comes from learning about a successful recovery story of a beautiful young female brain injury survivor.  Another time peace may come in learning about a family who keeps their faith in God and each other, despite a life long struggle on multiple fronts for their survivor son.  But every one of us agrees: Trauma impacts every aspect of our lives!  None of us will ever be the same.  And while some wonderful things emerged in all our lives because of Hillary’s car crash two years ago, there are no words to describe the many horrible things that resulted from that Saturday night on I-24.   Our beautiful, vibrant, head strong twenty six year old daughter and single mother essentially “lost her life” that evening because she was texting and driving.  But so did we.  From that moment everything in our lives changed….forever.  A little boy who still waits for his mother to be who she was before her crash is perhaps the worst of all outcomes from the event.  It was just a few months ago that I caught him staring at the banner full of happy pictures their friends had made for their benefit to support Hillary.  I said, “She’s beautiful…isn’t she?”  While nodding he continued to stare at the pictures for the longest time.  I said, “Right now….this very minute….what are you thinking?”  He said, “If only I could go back in time.”  Yet, if you could see the smile on his face now when he is home, you would know he finally has real hope again.

    Recently during a fairly lengthy road trip, I watched a gift of survivorship that I will never forget.  The radio was on full blast and Hillary and that sweet boy were singing old rap songs and other popular “family favorites” together; all the while her son was saying, “Remember when we used to sing this, Mommy?”  And “…remember how we used to laugh at this person who thought the words were this?”  And the stories went on and on…all of us in the car understanding her voice and memory was right then somewhere between the gorgeous melodic voice she used to have prior to September 1st, 2007–and the broken angel she used to be who couldn’t even remember or sing the song, “Happy Birthday”, just a few months ago.  From that day to now, Hillary’s son has realized, his mommy is going to be OK.  And while there is still a way to go, I know Hillary now thinks she can get there too. She may have some pretty tough challenges.  I suspect she will have both physical and memory challenges.  Oh well, she’ll just feel like a 50 year old before her time, right?  But every day, more and more of our Hillary comes back “home” to herself and to us.  And we are eternally grateful for your loving prayers and the loving kindness and care our entire family has received from God and His messengers and healers of all types.

    When we looked in our camera to post the pictures to her site today, we also saw pictures of her from just two weeks ago….and some from two months ago.  WOW!  What a difference…and to be honest….a very easy way for Paul and me to see her progress.  Sometimes it gets a little hard to see how far she has come….and where she can land when you are actually on the brain injury survivor road with your loved one.  This is especially true if you are the primary care givers.  Let’s just say it isn’t all pretty!

    That said, we have decided to transition Hillablog to a different type of site.  We are going to periodically blog in “pop-ups” about brain injury recovery.  Remember “pop-ups”?  They are the thoughts that come quickly and constantly into womens’ heads.  Pop-ups really need to be shared!  Just ask any woman….and especially quickly if they are an ADHD woman, before another one arrives and the last pop-up becomes forgotten.  Because the brain is so complex and still such a mystery, recovery information from brain injury is pretty difficult to predict.  Yet the more we get to know other survivor families, the more we do see some patterns of behavior that don’t seem to be documented in any other brain injury resource.  We hope by writing about these various nuances of behavior and “Hillary methodology”, we might provide insight in some way to the behaviors of other brain injury survivors.  And please note: There is nothing about our Hillary behavior notes that is based on anything but Coltharp family theory.  We are getting to know our “New Hillary” every day.  But more things than not are the Hillary we always knew and loved; or the Hillary we loved and wanted to strangle sometimes…depending on the behavior.  Sometimes those behaviors are forever Hillary behaviors…but “on steroids” of sorts.  Other survivor families tell us the same.  Hopefully we may learn something from the hundreds of folks per week who still visit this blog as well.  So here we go with our first “pop-up” about brain injury behavior:

    Hillary loves green.  We don’t remember her having this kind of relationship with that color in pre-brain injury life. Hillary doesn’t just love it…at one point it was all she wore and bought to wear.  I can’t tell you how many bright green sandals she has purchased that are still stashed in a closet somewhere for a couple of reasons: 1) Due to her left side leg and foot spasticity she doesn’t need to wear these type of sandals and 2) due to the bright green color that borders on neon green, she doesn’t need to wear these types of sandals.  No matter how often we hide them or where, she always seems to find them and brings them to us like a bird dog would bring his game to the hunter.  She wears a gorgeous bling bling ring of green (now that’s where color belongs..on bling bling!) and for a while, would only consider green anything. We’ve seen so much green over the last two years we are officially over the color green.  (Thank goodness the Titans and the Cats as well as our high school Tilghman Tornados are all Big Blues and not Big Greens!  I don’t know if we could take looking out over a sea of green jerseys and sweaters right now!)

    So why is…hopefully was…she so obsessed with green?  It’s been her own words about her love of green that we always missed until now.  Hillary always says, “You know I love green…like my eyes”….(now adding sometimes…”and money”).   More and more we understand just how severe Hillary’s amnesia was and still is in so many ways.  It is actually lately, when she gets this, “Oh yeah…I remember that!”, joyous look in her eyes that shows us just how bad her amnesia has been until now.  If you think about her brain injury and what happens in the aftermath of coma, a critically injured patient like Hillary begins recovery at a level where she is not able to breath on her own, open her eyes, respond to painful stimuli, speak, or move.  Hillary was not even able to swallow until over 7 weeks post injury. She had to relearn everything…including who she was and what her life was; not to mention basic human capacity skills.  Studies now show that a trauma patient who hears the single voice of her most significant family member from the earliest hours of coma absolutely recover much quicker. While we knew that in our hearts, as a decent and logical society, I don’t think we had total science based efficacy proof of that until the latest cutting edge research around TBI.  Hillary did not have benefit of that, but thankfully did have other members of her family and friends who helped with their loving voices almost around the clock. And what did we all say when she began opening her eyes?!?!?  What did we all say when she would look around the room unable to speak a word?  We’d say things like, “Look at those beautiful green eyes!”  or “There she is…look at those green eyes…she looks like our Hillary”   For weeks those eyes looked miles away, but every week they came to us a little more.  And each time we looked at her we spoke about Hillary’s beautiful green eyes.  We have begun to believe those green eyes (and the color green) is the first thing “New Hillary” learned about “Old Hillary”. Hillary has beautiful eyes….and they are green….and they are important!  In some way, Hillary’s green eyes are Hillary.  That much she learned very early on in her survivor journey.

    More pop-ups to come.

    So take a look at these beautiful, happy Hillary green eyes!

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    Telling me to stop with the camera

    Hillary with her most attentive brother Boomer 

    Aaahhh Hillary’s full throttle laugh!

    Vance looking for PaPaul

    Vance looking for PaPaul

    “Where’s PaPaul?”

    Vance asking Boomer and Murphy when PaPaul if they know where PaPaul is

    Vance asking Boomer and Murphy where PaPaul is

     

    Happy Fall!  It truly feels like a homecoming weekend around here….the best kind.

    XOXO

    Shawn