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Health & Fitness

Every Minute of Every Day

Sometimes its hard to know what to fight for...and what to let go of.

Tonight I watched the story of Gabrielle Giffords, the congresswoman who was shot in the head which resulted in a brain injury.  It was all too familiar in detail, complete with hope and determination.  The pace at which she is healing is impressive and watching how her husband helped to pull her through, with his love and dedication was just as cool coming from her astronaut as Juliana’s rock star.  But as similar as the roads are between Gabrielle and Juliana the striking difference is the sheer determination to recover.  Gabrielle was able to begin emerging from her coma in 5 days where Juliana took 6 weeks and we know that is one of the predictors of outcome, with the scales tipping against us on that one.  But we have overlooked many of those facts over the last two years in favor of our passionate need to reclaim Juliana in our life.  I probably shouldn’t try to compare the two but everytime I meet someone new with a brain injury, I can't stop myself, in spite of the hurt I might feel.  But watching Gabrielle progress I am encouraged at what is possible even if Juliana’s road will likely be longer than Gabrielle’s.  But watching her smile and laugh I am equally discouraged that we haven’t latched on to the key to Juliana’s happiness which could ultimately propel her into a joyful life.  We were told in the beginning that the patient’s involvement in their recovery was key to the distance they would go post injury.  We saw this to be true each time Juliana leapt forward in her progress.  Those were the times when she joined the team.  With her membership card temporarily returned it feels like Juliana and the Injury are on the same side and I am the enemy to them both. 

I read a statement yesterday that struck me hard even though it was not directed at me.  The moment I read it I was instantly thankful that it was not said to me.  In fact, if this statement had been made to me I would have likely abandoned my shaky position on the high road and dabbled in the dirt.  A woman, who was trying to comfort a mother of a child who had just passed away from a tragic accident said, "At least you still have 2 other children".  It was an honest attempt to soothe a woman who will forever feel the void of a child she loved.  It was a naive attempt to minimize the pain by focusing on what you have left.  It was a futile attempt to distract from a grief that cannot be denied.  I will never stop being grateful for the health and happiness of my children and I have certainly treasured them more in the wake of the accident.  I always felt that I was fortunate to have such a bounty of healthy children and still the odds are in my favor.  But they really are not a group of separate parts but instead are all so distinctly loved that that none of them are a replacement for the other.  Any amount of loss cannot be absolved by the fact that you have other children to love or even many other things to be grateful for.  Even if my five other children achieve incredible success and complete health and happiness I will not settle my expectations and stop wanting the same for Juliana.  I grieve that girl and the more time that passes I fear that I will forget who she was while simultaneously fearing that I can never forget and move forward.  A healthy mental balance is sometimes just as hard for me as it is for Juli but I have more reason to keep trying to get it.  I have clung to hope of Juliana's recovery from the very beginning and I know that has dragged me blindly through some pretty horrific moments.  In fact, believing it when we were told bold face not to created the only happy place I could be.  Being forced to face reality never yielded a kind outcome. 

I still believe that Juliana will significantly improve and am willing to continue to proceed with all of my energy toward all that she can be.  But I am coming to realize that I have to learn to do it with an alternate look on what her future might be and if that includes a wheelchair or a walker or braces on her legs I can accept that and do my best to help her accept it as well.  But what I can never accept is her intense unhappiness that is robbing her of quality of life.  Often Juliana says to me that I couldn’t possibly understand because she is going through this alone.  In many ways, she is completely right.  But what she may never understand is that the fate I am living with, the thing that powers my momentum is trying to end my parental nightmare of watching my daughter suffer.  Every parent can relate, regardless of their individual circumstances and many days I have jestingly said, “Ok, I decided. Turns out… I don’t want to have kids after all.” You are instantly prisoner to the love you have for them so when they fall, they take you with them and it carries physical pain.  And as if the initial prognosis is not bad enough, a Traumatic Brain Injury seems to be the ‘Injury that keeps on giving’.  I may be completely wrong but it appears as if once the brain has been disturbed from its intended connections the attempts to correct it will include as many failures as successes.  To give you an example, the left foot we have tried to redirect to a normal position through surgical intervention is now trying hard to find a different configuration of contortion. 

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It all still confuses and surprises me in spite of now knowing I should be guarded in my hopes.  The effects of this neurological turbulence are still wreaking havoc, even if only it its wicked attempt to break our resolve.  It is a formidable opponent.  I used to see old pictures of Juli and it made me happy and longed for that girl to return.  Now when I see them my heart breaks knowing the girl in those pictures never saw this coming. 

Now...my mirror reflects the same. 

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Song number 10 on Chris Medina’s new album, What Are Words is ‘Beautiful Eyes’ and begins with the haunting line, "I had a dream, I turned back time.  You never left for work that night...."  A couple of days ago when we were listening to it together Juliana asked me if I ever wished that line were true.  I stared at her calmly but the tears were fierce and flowing when I replied.

“Every minute of every day, Juliana.”

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