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.

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.)

(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

Hillary is back home and happy on Hillgate!

Prepping hotel welcome bags

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!

Telling me to stop with the camera

Aaahhh Hillary’s full throttle laugh!

Vance looking for PaPaul

“Where’s PaPaul?”

Vance asking Boomer and Murphy where PaPaul is

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

XOXO

Shawn

It was a special weekend in Nashville!

First for the beauty of God’s love between one of His newest couples, Mr. and Mrs. Joshua Wallin; but also for the miracle of one very special bridesmaid….and her equally miraculous grandmother.  Just two years ago I don’t know how many of us would have believed Hillary or my Mother could have been so beautifully in attendance for Brittany and Josh’s wedding.  But there they were!!!  God and His faithful with their intercessory prayers are amazing!  Although Hillary was exhausted from a very rough week of surgery and the challenges that circled all our lives, she insisted on standing during the ceremony as long as she possibly could.  And my Mom, who just two years ago was bed ridden for nearly a year, was so beautiful on the first row….and in high heels!  And not to be out shined, my “just turned 90 Dad”, was so handsome and beaming as he sat in between my mother and me.  

There are many more pictures to come, but for now, introducing Josh and Brittany Wallin:

Mr and Mrs Joshua Wallin with “The King” 

Bridesmaid Beauties and friendship personified    

My Gorgeous Parents–Harold and Jessie (Maw) Gilbert with our cousin Sheridan Griffin

Paul and his Three Sons– Alex, Josh and Billy   (Celebrating the men out number the women in our family now)

Darlene, Paul and Shawn.  We always know how to make him blush!

Thank you for staying on this journey with us…on the scenic route!

XOXOXO

–Shawn

PS

Vance quickly said, “Let’s get this party started!”

With electric flashing light glasses and a great DJ, Vance was on “Rockin’ Go” all night long