Parker's Purple Playa Power..Pounding at Juvenile Rheumatoid Arthritis

Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!

Showing posts with label Make-A-Wish. Show all posts

Tuesday, November 11, 2014

The Life of Parker: VIDEO Blog

CHECK OUT THE VIDEO THAT PARKER MADE TO TRY AND EXPLAIN WHAT HE GOES THROUGH WITH SYSTEMIC ON-SET JUVENILE ARTHRITIS

Click below on video picture or on this link: The Life of Parker

Thursday, November 15, 2012

Parker Defines a Hero…

What defines a hero? This is a question we are often asked in life. A hero can be anyone from someone making you happy when your sad to a super hero like Batman. Every body has their own definition of a hero, but in my opinion anyone can be a hero, even you.

A hero can be defined in many ways. For example a hero can be just a person who inspires you. In my case I am a 13-year-old kid with arthritis and some of my heroes are the little kids that are like 4-8 living with it. These kids inspire me a lot because they have had excruciating pain their whole life and they don’t know and may never know what it is like to be a kid and just have fun. A hero is also someone who keeps a positive attitude no matter what. My mom always says I’m her hero because with everything I go through I can still maintain a positive attitude. She says, “Parker you are my hero because you might be little but your enormous strength shines through with every smile and with how you inspire others.” A hero can also be considered someone who risks their life or sacrifices it for the good being of others. The best way I can describe this is with our troops fighting the war. They risk their lives every day some even die just so their county can stay safe and have freedom.

There are many examples of heroes out there but my biggest hero is Ben Zobrist of the Tampa Bay Rays. I met Ben through my Make-A-Wish in 2011. My wish was to meet him, but he did not only talk to me; he took time out of his practice to introduce me to all the players, give me a tour of the locker room, and play catch with me. But this is not the only reason I consider him a hero. The main reason I consider him a hero is because on May 5^th 2012 I had the walk for arthritis. I thought it would be just like any other arthritis walk but then Ben Zobrist appeared. It wasn’t just him; he actually brought his whole family with him.

Normally when you meet a celebrity they just forget about you but he didn’t. He actually came to my walk and stayed and talked for 2 hours. Then a month later, I was put in the hospital but when I got home Ben and the Rays had sent a box of Rays bobble heads and an autographed bat. Then on my birthday I emailed him and told him I was going to the game and he actually came on the field and waved to me. And I know he did because he emailed me back saying “I saw you at the game today.” But it isn’t just the things he did for me that make him a hero. One big thing is that he plays every position on the field and strives to do his best at all of them. He also has strong Christian faith and his wife is a Christian singer. He is also a great father to his 2 baby children. Something that truly makes him a hero is that he is a good person a wonderful dad and a fantastic role model for all children.

Now that you know what a hero is, let me explain to you what a hero is not. A hero is not selfish, and what I mean by that is he is not someone who does all the good things he does just so he gets good publicity. Or just helps someone he likes. Or even just helps someone because it benefits him. Also a hero isn’t always someone in tights like batman. I’m not saying batman isn’t a hero but what I am saying is a hero isn’t always someone in tights; a hero could be a old lady helping a boy up after he fell. I feel like a lot of people think that a hero has to be a super hero like batman when in retrospect anyone can be a hero.

So a hero is someone who inspires you, like Ben Zobrist. A hero is also someone who always keeps a positive attitude through everything. A hero is also someone who risks or sacrifices their life for others. A hero is not someone who is selfish and not necessarily someone in tights. And that is how I define a hero.

Tuesday, April 17, 2012

With Deep Heartache Comes Happiness…

We are a happy despite all our struggles. In fact, our struggles have brought us the richest, deepest happiness possible. Through our intense sadness we have seen the goodness in people. And for that, we are truly touched and blessed.

We have met so many people along our journey…all with their own kind of journey. People of all walks of life…some we have met in our childhood, some through school, others through work, people through our common interests, many from family members, others through networks, and those who can relate with our struggles. The connections we have made have webbed across this beautiful world of ours. And this web keeps us connected…

I am continually amazed with the goodness in people. And the goodness keeps on giving. And all the kindness that has touched our family gives us such hope and inspiration and energy. People are touching our family in simple and yet very profound ways. I just have to share a few of our amazing experiences…a small preschooler is collecting her “Pennies for Parker’s Purple Plays”; Ben Zobrist granted our dear boy’s wish and was so kind and engaging; a total stranger mailed Parker a bobble head, from many miles away, of Ben Zobrist after seeing his Make-A-Wish story; Logan’s doctor in the hospital personally called his school to tell them how wonderful he is and to encourage their support of him; our bosses are completely supportive of both of us; a preschool is raising money for our walk team; a youth group leader we have never met sent a letter of how Parker inspires his youth; a friend has volunteered to show up at 5:30 a.m. to help set up the walk (wow); our very special friends always remember to not only check on Parker but also our sweet dear Logan; my aunt has folded more laundry than I ever care to tell; our neighbors have helped with our dog when we rush off to the hospital 2.5 hours from our home; nurses and doctors who are not even assigned to Parker come to visit him when he is in the hospital; the Boy Scouts and Girls Scouts who are working hard on behalf of their friend Parker to raise funds; the amazing Child Life group works endlessly to bring joy to the floors of the hospital; many children have collected many many can tabs at school to benefit the Ronald McDonald House; friends send cards or call at just the right moments; teachers have continued to check-in on us; little children whose lives are touched by JA (including siblings) touch base with our boys and send texts and messages; the infusion nurses surround us with love through their care; colleagues have stayed close and connected during the most incredible time in my life; the Arthritis Foundation has given our family the opportunity to grow; learn, and meet others; the manager at the Ritz gave our family the opportunity to see Parker and Logan glow when meeting “Young the Giant”; strangers donated to our AF garage sale; Camp Boggy Creek gives so many families continual love; our camp counselor came to visit Parker in the infusion room; so many, many people have joined our walk team and are raising funds for the many touched by this disease; many people who have donated to our walk…some we don’t even know; a special someone who made a “Tucker Turtle” blanket to raffle with Parker’s story; the young man who taught us about power, peace, and purpose; the Dirty Shame who is hosting a benefit with 100% of the proceeds going to the Arthritis Foundation; the Parrot Heads support our children with JA; many early childhood providers/trainers came to play with all the many children at the Family Connect Day; the little friends who donated toys to the infusion room; the individuals who welcome Logan into their homes at any time on any day; the Elf with Elves that arrived at our front door with a purple mini Christmas tree and tons of love in their hearts; Parker’s doctors who take the time to connect with him….really connect with him; our friends and family who say just the right thing at the right moment or simply listen; my team at work who carry on no matter what; the children who push through their pain with smiles on their face that fill the hearts of all they touch; and the lady we recently met in the hospital who totally engaged my son and encouraged him to keep on keeping on….to each and everyone of you ….thank you. Our lives are forever richer with you in it!

Keep paying it forward…Never under estimate the wonderful things that can happen when lives are touched by loving relationships…the best medicine in the whole wide world.

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