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I recall sitting in Juliana’s hospital room at RML, back in November of 2009 desperate for answers.  She was beyond the most critical moments of survival and in front to the improvements that would become rehabilitation.  We didn’t know what was coming next, believed she would improve, but we were completely lost on when the next ‘thing’ would happen.  Waiting for her to awaken we wondered what would be missing from the ‘whole Juliana’ that got in the car that early October morning.  We were assured that from total slumber back to ‘before’, the path was certain to resemble a winding broken road filled initially with more breaks than road.   We heard them say there was no way to tell what functionality she would regain so we waited in the near silence of her room for the mystery to unfold, growing more and more impatient for some clues to be revealed.  Anything was possible and changes could occur at any time but no one could answer ‘what’ and no one could answer ‘when’.   It was like walking through a haunted house that is anything but fun and it has already scared you to death and you just want to know when it’s over.  You can’t see anything ahead of you and there is no one to guide you.  There are other people walking with you but they don’t know what to expect either so you just hold on tightly as if the grip on each other will somehow make it all more tolerable.  You can hear others ahead of you as you desperately strain to use their reaction to prepare.  When they scream, your heart falls and you pray to God you will be lucky enough to avoid the upcoming terror. 

We searched the internet for information on what we could expect and we did find some of the more noticeable changes chronicled by families in the form of inspirational videos, probably made hoping to fill the same gap I now feel the need to fill.  Those major changes, coma to awakening, wheelchair bound to ambulatory, silent to speaking all showed us that there was life beyond the stillness that defined her at that time.  We got our answers and they were as different as the people who were injured but we learned and lived enough to move into acceptance mode.  Here in that mode though again I find myself curious, though far less desperate, for how much others have progressed and how quickly they did so.  The results have less mass appeal but to those of us still in the trenches every day, the improvement holds significance in a completely different way.  The considerable strides Juliana made in the first two years inspired thousands both near and far, but the consistent pursuing of improvement is what makes an impression on those of us living alongside her day by day. 
  • Every single morning waking up includes getting a little bit better at sitting up in bed (snuggling our adorable Magic helps), holding the railing with more strength in her right hand and sitting down in the bathroom with improved control.  
  • Every single meal includes more precision feeding herself and drinking with a steadier hand.  Every walk down the stairs requires less instruction from us on where to place her feet or which rung to grab.  
  • Every day on the computer includes better hand eye coordination with the mouse and keyboard.  Every message she types on Facebook has fewer repeated keys and typos (which she hates because she is an excellent speller).  
  • Every conversation she has either verbally or written is more full of personality, wit, intelligence, consideration and maturity.  (If only we could throw articulation in that list...grrrr....nevermind...wrong blog, wrong blog).  

Those are the changes that I could not have predicted would need to come back by the dropful when we were unsure when she would wake up.  I couldn't have appreciated the minuscule perfection in technique that would highlight our future when I was simply waiting to know if she would even remember us.  But I see that every single thing she does from swallowing to thinking to creating a work of art has to be done with incredible effort in order to fit back into her life.  And even though there were many times we couldn't be sure an activity would get better, the work that is required every single minute of every single activity of every single day is paying off. 

So if you are caring for someone with a TBI and are living in the dreaded ‘plateau’ with your loved one, you may not find an inspirational video that documents the subtleties of finally having dinner without them spilling their soup and wonder ‘when’ that will improve.  (Well don’t expect me to video tape that one either) But you at least have my word on it:  In spite of what the experts say, if effort continues, changes will take place.   I can’t speak for anyone else out there but as a mom who watches my daughter try over and over each day until slowly…painfully slow, she is knocking another obstacle out of her way.  And although I am impatient by nature, I recognize that what is worth having is worth waiting for.  'Slow' is not my favorite speed but its still forward motion.    

I am sure that most of these details are not rays of hope for the masses because thankfully sitting down for breakfast is not a series of skills your brain had to relearn.  But for those of you who stop searching for answers because the monotony of what improves in the later years of TBI recovery is far too subtle to make the morning news, I hope you continue to work toward recovery.  The Juliana of today is clearly much better off than the comatose girl in 2009 but even as I trembled in the dark monitored room back then, I expected nothing less.  I may not have expected the road to be this long (and certainly not this permanent) but if I did expect that, I certainly would not have expected Juliana to work as hard as she does for as long as she has been working.  And in spite of it all, everything she has achieved, Juliana is still not at all impressed with the strides she is making, the impact she has on people, or the art she creates. She enjoys the accolades but remains her own biggest critic.  I can’t expect her to grasp the magnitude of how far she has come but I stand in awe of her and her time served.   I still want to know what is going to happen and when it will occur but…sigh…I get it…What will happen When it does and looking back we will have our answers.  I guess I will go back to the generic answer that works better than any other:  Anything is possible …at any time.


 


Comments

01/07/2013 00:21

Spoken better than any "expert"! In my opinion, those of us going through something and our loved ones (moms like you) are the experts...NOT the doctors! :)

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01/07/2013 11:27

I was particularly struck by this post - the words "what" and "when" are uncertains every day to my family, having two kids on the autism spectrum. I'm with you that little things mean a lot and when it seems like you haven't come too far - you look back and see how far you really have come after all.

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01/07/2013 00:51

We use 10% of our brains when we are well. The reality is that there is 90% potential to do great things. We need only to unlock those doors. Even brain damage doesn't lesson the possibility of human potential. We are still only just learning things about ourselves. The possibilities are endless. Push forward, you'll be surprised at how strong the human spirit can be.

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Gina
01/07/2013 03:22

Reading this blog has inspired me once more to never lose faith in a loved one who has a TBI. December 28 was a year since my brothers accident and the doctor has told us his brain now is how it will always be. His wife and I seem to be the only ones who choose not to believe that. Some days he will remember us, some days he may not. It is a constant struggle for him I know but I don't sit there and just give up, someone has to be there believing in him so that he may possibly prove every doctor out there wrong. He will never walk again I have come to deal with that but I refuse to give up on how his brain will heal and refuse to believe that it has .

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Janet Spencer Barnes
01/07/2013 22:03

Gina absolutely DO not give up! They told us that she was 'done' improving so many times and I am telling you they were so damn wrong! That is my point! When the big milestones have passed the experts stop counting the progress but those of us LIVING it can see it continues. Where there is life, there is hope.

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01/07/2013 09:46

What I love about Juli, is her terrific sense of humor. In the short amount of time that I have gotten to know her, I am amazed at her ability to understand and know exactly what she wants. Her art is progressing so beautifully with her own style and taste. She will succeed,thanks to an incredible Mom and family.

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Nish
01/07/2013 11:24

I love this blog!! As a fellow TBI survivor, you put it all out there exactly the way it is. Nice job, Janet!! And Juliana, you still are kickin' butt and takin' names and I love that about you!!

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Kristyn
01/07/2013 22:37

Love love love ,,,,I too understand that haunted house. Not knowing when the scared moment would end ,,if ever . Push forward everyday and NEVER EVER give up!!!!

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sara , guðný and helga
01/10/2013 14:52

hey, we are tree 12 years old girls from iceland and we wish you all the best on the recovering. Never give up your hope. We belive in you Juliana. :* hugs and kisses (knús og kossar ,hehe in icelandic) xoxoxo

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03/05/2013 05:29

And even though there were many times we couldn't be sure an activity would get better, the work that is required every single minute of every single activity of every single day is paying off.

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       Janet Spencer Barnes

    Picture
    Read where it all began, in For Juliana: Almost to the Almost, One Penny at a Time, by Janet Spencer Barnes.

    Message from the Author...

    The blog is about Juliana's recovery from a traumatic brain injury sustained in a car accident on October 2, 2009.  But as her mom (and a mother of 5 other children), sometimes it is a little bit about the rest of my family and what i have learned about life... and what Juliana must re-learn.  Its also just a touch about Juliana's incredibly wonderful fiance, 
    Chris Medina. 
    Oh, you have heard of him?
     

    Blogs gone by...

    February 2013
    January 2013
    March 2012