Hillablog
Monday, 16 November 2009
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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!”
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!
Saturday, 31 October 2009
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Measuring Progress
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!
The Grim Reaper
Vance--Nothing scares this kid!
Happy Halloween!
XOXO
--Shawn
Tuesday, 29 September 2009
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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.
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
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
About Me
Hillary Coltharp of Paducah, Ky is a beautiful 26 year old single mother of a precious 6 year old son. On Saturday, September 1, 2007 she was in a terrible one car accident on the way to meeting her family for dinner. This page has been created to keep everyone updated on her recovery.
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