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

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.

LOVE Powers Our HOPE

Wow!  What a week we have had… I have been pondering over how to write our “thank you” all week in the midst of all of our happenings…As many of you know, Parker was accepted into and started the RAPPORT study which is an National Institute of Health study on the drug Rilonocept and its effects on systemic on-set juvenile arthritis.    So between work, labs, and a trip to Shands Hospital, I am finally sitting down to write about our Arthritis Foundation Walk and the thankfulness that overflows in our hearts…

Well, here it goes…  People walk in and out of our lives each and every day, it just naturally happens.  Taking the time to build lasting relationships with people has blessed our lives immensely.  And it’s moments like we have experienced when you realize how interconnected we all are… On May 5^th, we had the pleasure of sharing in one of the most remarkable experiences with many many people who will forever be IN our lives and dear to our hearts.  May 5^th, Parker was showered with love that totally wrapped around our family in a way that words cannot quite explain.  As we pulled into the parking lot, we gasped at the sea of purple starting to wash over the park.  We knew a lot of friends and family were joining us, but it’s overwhelmingly powerful to actually “see” it.  In addition to our team, there were many people out supporting various other teams…definitely more than last year.  All I kept thinking is how much love was in that park for one single cause!  Everyone’s lives were touched by the many forms of arthritis.

We are so very thankful to all the people all across the nation who wore their purple for our sweet boy, Parker.  And we are incredibly thankful to the over 130 people who came out to walk with Parker’s Purple Playas.  There were friends from my work, University of South Florida, and Michael’s work, Southern Wine and Spirits, who not only generously donated but also came to walk with their families and friends.  And did you know that Southern Wine donated each and every one of the 202 shirts that were made with the drawing of Parker’s Purple Playa on the front saying “I’m not fat; I ‘m puffy!”  It was so wonderful to have all our family and friends join us and even many strangers who quickly joined our circle of friends.  We had several early childhood colleagues/friends from multiple agencies and preschools who walked and some even hosted fund raisers to donate to the cause.  Girl Scout Troup 65 and Boy Scout Troup 212 joined with their families and also worked together to raise funds.  My aunt and uncle came out to pop kettle corn and donated all their proceeds to the Arthritis Foundation.   And a very special thanks to Joseph who went to all the staff from Parker’s middle school and shamelessly collected donations for his friend Parker.  We even had some staff and kids from TCMS’s Junior K Club join us.  Team mates also asked their friends and family to donate and walk.  We had complete strangers opening up their hearts to us.  Children from Westchase Aftercare gave up their coins to donate; and a very special little 4 year old Purple Playa, Kailyn, collected her precious “pennies for Parker”.  We had donations from all over the nation…from colleagues, friends, family, and complete strangers…all touched by one sweet boy, our boy.  We love him dearly.  If you haven’t met him yet, here is a short video that he made to explain what it is like to live with systemic on-set juvenile arthritis…I am sure if you watch, you will see how people fall in love with him too.  Parker's YouTube Video Link

As Parker was getting his team ready for our walk team picture that morning, I was in the bathroom helping the Tampa Bay Ray’s mascot, Raymond, get over to the team.  When I walked around the corner holding Raymond’s hand and looked out at Parker’s Purple Playas positioned for the snapshot, I could see Logan at the very tippy top of the mountain-like jungle gym.  Logan, Parker’s older brother, right at the top of it all.  I was totally overwhelmed at the site.  Logan has endured all of this right alongside of his brother and in that moment I was so very proud of the young man he has become.  He has strength, compassion, brilliance (the kind that shines), and he so deserved to be “on top”.  At first he was all I noticed…and as we got closer and closer the white nose I was hearing turned into cheers.  My breath escaped me…and my eyes glassed over with the tears that were trying to flow.  We were all there…in the moment… together!  For one cause!  With HOPE in our hearts! 

Parker grabbed his bull-horn that Logan had covered in duct tape…purple duct tape, of course.  He cheered his team on while we snapped pictures…  We love each and every one of the Purple Playas.  So much of the morning felt like a blur…  As we all began the actual walk, I kept thinking how incredible it was to share in this moment…all of us…walking together.  As we rounded the second corner I felt compelled to thank everyone…We were at the front of the walk, so I turned around and started to walk against the flow of traffic.  That was pretty funny because my husband also had the same idea (we had separated somehow but met back up as we walked against the crowd).  We knew the only way we could try and say thank you to everyone was to walk all the way to the end…so we did.  If you are reading this and we missed you somehow, please know that we are eternally thankful.

When we finished walking, the crowd dispersed somewhat to play games, enjoy the playground, and to check out the vendors.  And then a marvelous surprise arrived.  Parker has always adored one of the Rays baseball players…and guess what…his hero, Ben Zobrist, came to see his buddy Parker and he brought his beautiful family with him.  They were so gracious with their time and posed for the many pictures and chatted with the small crowd that gathered.  And when the crowd dispersed, I was deeply touched that they just hung out and played with their dear children.  Julianna Zobrist was so delightful and the fact that they took time out of their precious family time to join our family in this event was so special.

What touched me the most though, was that my father, mother, sisters, nieces, nephews, and aunts and uncles and my dear sweet grandmother all came out to join the walk.  I kept looking over at how beautiful my grandmother looked sitting under a huge oak tree with a smile full of love on her face and I couldn’t help but to think of my grandpa who passed the same day that Ben Zobrist walked into our lives when Parker got his Make-A-Wish…and there was one person who made so much of this come together for both of these events…Jen Funk.  She works with the Rays, often behind the scenes...and she is an amazingly giving and caring individual.  Thank you Jen! 

When Parker and I were saying prayers that night, Parker said to me “Mom there were a lot of people out there today for me.  It feels good to be surrounded by so much love.”  My thoughts keep going back to my grandpa… who would have thought that the Parker’s Purple Playas are “the most to say the least” and that all we need is “a smile and a few kind words” and that he would have thought that this event was totally “top drawer!”  I am sure he is up in heaven right now with Grandpa Tony, Memere and Pepere thinking how very blessed we are to be surrounded by love!

If you would like to see pictures from the walk please visit these 2 links (and there will be more…my uncle is still editing some) : 

Photographs by Denise Veselka

Photographs by Jane Winstead

Love from our family to all of Parker’s Purple Playas…Together we raised over $15,500.  Join us again, same time, same place, next year!

P.S.   And Happy Birthday Grandma Dianne.  We know you couldn’t walk with us, but hopefully you could share in the experience by reading this.  We love you very much!

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.