Friday, September 23, 2011

"Thanks" is Definitely not Sufficient to Express Our Gratitude

Our family would like to share our letter of gratitude for all that Make-A-Wish did to grant Parker's wish to meet Ben Zobrist and the Tampa Bay Rays.

September 18, 2011
Dear Norma, all Make-A-Wish Staff (including Melissa, Eva, and Maria), and the Rays,
My family wants to thank each of you for all you did individually and together to grant Parker’s wish.  I am sure you constantly hear that “there are not enough words to express our gratitude”.   I am going to do my very best to express our heartfelt appreciation.
As you know, Parker’s sense of self drastically changed the day that he learned that he has systemic juvenile arthritis (a.k.a. still’s disease).  He went from being a child who was actively engaged in sports and very active movement, to clearly being a spectator; but he still has a great appreciation for sports.  He has also struggled with thoughts of the possibilities of this disease taking over, not only his joints and muscles, but his internal organs.  This realization would probably be too intense for most adults, and so we greatly admire our son for his bravery and perseverance. 
A parent’s job is to keep our children safe, teach good values and problem solving, and to bring happiness to their lives.  As hard as we have worked to keep him safe, this disease has invaded his physical body.  We are desperately trying to stop its progression and the costs have been great.  As with many life threatening diseases, when one is faced with this reality the world seems to stop.  And yet, as our world stopped, the world around us felt as if it was moving at fast pace.  Our family has dealt with making hard decisions, examining what is important, and realizing that our faith must propel us forward.
When it was first mentioned that our child would qualify for Make-A-Wish, there were very mixed emotions swarming inside of us.  One was, “oh no, there are other children who need this more than our child”.  Another was, “well he doesn’t have cancer, so I don’t think he should apply”.  A third was, “but he is going to get better so this should be reserved for kids who will not”.  Then finally, we faced the “truth”…there is no cure for our son’s JA; he is going to live with this the rest of his life; and he deserved to experience happiness and something to look forward to and celebrate.
Of course his wish every single day and with every single shooting star, fallen eye lash, dandelion, prayer, and birthday candle is for a cure…we wish that Make-A-Wish could grant the cure!  And although our wish for a cure has not come true yet, Make-A-Wish and Ben Zobrist has helped us with raising awareness that a cure is so desperately needed for systemic JA and all juvenile arthritis diseases.  This gift, to a parent, is priceless. 
Most importantly, Make-A-Wish and Ben Zobrist has brought profound happiness to our child.  Parker has long admired Ben Zobrist.  Parker feels that he is the most “loyal” fan of all time.  He began following Ben’s career very early on and what he loves most is the versatility that Zobrist has.  When he talks about him, there is pure excitement in his voice and amazement in his talents.  He admires that Zobrist takes on a challenge and that he stretches himself and his possibilities.  As parents, Michael and I both enjoy this excitement around the game of baseball but we have always felt that Ben Zobrist is a great role model for children as an athlete, father and through his faith.  As an educator, I am deeply touched that he thinks of our youth and does the “take Zobrist to school” program.  In talking with Ben Zobrist over lunch, my thoughts were confirmed; he is an exemplary role model for our children.  Parker “believes” that Zobrist can achieve his goals.  Interestingly, Parker is a lot like Ben Zobrist…Parker doesn’t give up, he stretches his abilities, and he has faith that one day there will be a cure and that his life has purpose.
As you know, this entire experience has been bitter sweet.  The same week that Parker was granted his wish, we were also dealing with my grandmother being released from the hospital with heart issue and then my grandfather being rushed to the hospital with hemorrhaging on his brain resulting in a stroke.  On our way to our Make-A-Wish, I went to the hospital to say good-bye to my sweet grandpa. 
As we switched gears, the four hours we spent with Ben Zobrist and the Rays were shear bliss.  It was as if we escaped reality.  We were greeted with love and excitement and the Rays took thoughtful care in including our older son, Logan, in the day of excitement.  We so appreciated that gesture. 
We pushed Parker in his wheelchair to the field and he go out of his chair to walk to home plate.  From that point forward the adrenalin he experienced gave him the strength to stay out of his chair the entire time with the Rays.  After standing on home plate and swinging the bat, Ben Zobrist entered the field.  Pure delight engulfed Parker’s face.  That moment seemed to take my breath away.  The joy was apparent, in his face, in his body, and I am sure it was filling up his soul.  This joy continued to grow as he interacted with Zobrist.  As exciting all the gifts of signed cards, bats, and jerseys were, the gift of time, love, and pure engagement with our son was the true gift.  Ben Zobrist brought our son’s joy back to him and us.  If I wasn’t there, in the moment, I would not have believed that Parker was throwing that baseball so accurately and forcefully to Ben.  It was as if he was “cured”…
I am sure Ben Zobrist has no idea that Parker had not had much strength or endurance for quite some time.  In fact, as soon as Ben walked away to prepare for the game, Parker sunk back into his wheelchair and admitted that he needed all his meds and that he had to leave to lay down.  Most days he feels terrible and deals with multiple medical appointments each week.  But the four hours with Ben Zobrist took all that away.  He was a kid again, filled with excitement and joy.  He had fun and felt “normal”.  We are so thankful that Ben Zobrist agreed to meet Parker and he spent so much time truly in the moment with him.  This gift was amazing and it keeps on giving every time he tells someone about his experience.  He lights up all over again, his voice has energy and so much excitement; it is hard to believe how very sick he is when he recalls his Make-A-Wish. 
Ben Zobrist’s and the Make-A-Wish Foundation’s gift has also spread to others.  Parker’s brother was intensely inspired by Ben’s kindness.  Both boys can see there is so much good in this world.  Parker has been recognized by others as “the child who had his wish granted and met Ben Zobrits”.  He received the most amazing letter of encouragement and admiration from a youth leader in the community.  And his story has touch people beyond our community.  A woman in NY sent him a Ben Zobrist bobble head from time when Zobrist was with the Tri-City Valley Cats.  So his Make-A-Wish is truly the gift that keeps on giving.
I have wanted to write this letter much sooner than now, but as you know, my grandfather passed away the evening of Parker’s Make-A-Wish.  So our family has been swelling with the entire spectrum of emotions.  But I must reflect for a moment on my grandfather.  He has taught us much in his beautiful life time.  He was a man of pure kindness.  None of us who knew him can ever think of a time when he was angry.  He always treated others with love and a helping hand.  He had a gift of granting children many beautifully contagious smiles.  He had a way of sharing his heart and bringing happiness to others.  I know he would have said that Parker’s Make-A-Wish was “ the most to say the least” and he would have thought that meeting Ben Zobrist would have been “top drawer” and would have reflected on the fact that all we need is a “smile and a few kind words”.  Thank you Make-A-Wish, the Rays, the Don Cesar, and most importantly Ben Zobrist your smiles and kindness and for granting Parker the gift of happiness. 
With much love,

Rochelle, Michael, Logan, and Parker Lentini

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