The Joy of WALKING...Don't Need That Wheelchair Today!

When Parker didn't get into summer camp this year it devastated him.  In the past 3 years, Parker has not been in traditional school due to his medical issues and so camp is one of the very few opportunities he has to be around other kids and to have fun.  He spends way too much time in hospitals, getting procedures/tests, and in doctor offices.  One night he was in so much pain that he tried using his bio- feedback and think of his "happy place" and he thought of Boggy...but that turned into much grief.  He came and woke me in the middle of the night crying hysterically, because in that moment, at 3:00 a.m. in the morning, he realized that he was not only in overwhelming pain but grief with the thought that he wasn't going to camp this summer.

Three days later (so much has been coming in 3’s for us lately), we got a call that a spot came open and he could go to camp.  We were hesitant to let him go because he would not get back from camp until just the day prior to school starting; and he was re-entering into high school this year.  We know that camp can completely wipe him out because he uses so much energy...But we decided to send him because this is the one thing in his life that brings him complete sustaining joy.

Because Parker was in his "happy place" at camp and we knew that he was being safely looked after with the amazing medical staff on hand, my husband and I decided to take a short weekend trip to the beach, our "happy place".  We have not been alone on vacation for 5 years.  And our oldest son came to visit us on the beach each day to skim board..."his happy place".  We all experienced the JOY of camp...

We were actually a little nervous to pick Parker up from camp because we didn't know what physical condition camp would leave him, as he had to start school the next day.  We never, in all this journey, would have expected to see the "Parker" that came home that day...He came home a happy, stronger, more energized child than we have seen in 8 long years of struggle with this very mean disease.  And, because the camp schedule has an early rise-and-shine kind-of day...his sleep schedule was also now on track for school days.

And the next day, the first day of high school...the first day back in traditional school with no hospital home-bound, no more on-line classes...Parker didn't just decide to re-enter school...he decided to leave his wheelchair behind and WALK through those doors and into his new-found strength and re-boot on “being a kid”.  He did it!  And he has been doing it all week!  We know that Parker's strength and drive brought him here!  We know that our many prayers and continued hope pushed this opportunity into his path.  But what we didn't know is that Camp Boggy Creek would give us and our sweet child a gift that is beyond measure and is full of JOY for our entire family.  

The words “thank you” are not enough. Our hearts burst with appreciation far beyond what we could say with our voices.  And we are so very thankful that the Arthritis Foundation made this possible; that Paul Newman had the vision and love to start these amazing camps for children with life threatening and life altering chronic diseases; and that there are volunteers, staff, and medical professions that give of themselves so that our children may simply LIVE LIKE KIDS.  We love you dearly!

Much HOPE and LOVE for LIFE,

The Lentini Family

When I Was a 6th Grader...I Hated JA!

 Parker was cleaning up his laptop for high school and he came across these thoughts he wrote in 6th grade...  From the perspective of his 6th grade mind, here were some of his thoughts...

 My life with arthritis is very hard:  Living with pain every day, having to take lots different medications every day that sometimes don't even do anything. These are all things I have to deal with all day everyday living with arthritis.  Arthritis affects my life a lot… like sports.  I used to play sports every day but now i can barely ride a longboard.  Every day after school i used go to North Lakes Park to wait for my parents to pick me up.  I went there from kindergarten to 5th grade.  It’s a rec. center so it’s mainly outdoor fun but they also had a game room, a big room, and an arts and crafts room. I used to love it because it was the only place i could just run around and play.  But as I got to 4th grade and i started to get Arthritis i became less fond of the park. Ya they had the other rooms but 90% of the time they have you playing outside. Sometimes i felt good and wanted to play but as my arthritis got worse i didn't want to play because it hurt.  But the coaches sometimes force you to participate but when I'm hurting i can't play. 

So as i went on to 5th grade i had to totally stop sports due to my arthritis and i still don't play them now.  I mean every once in a while i ride my longboard and that’s the most exercise i ever get science my arthritis.  So now i mainly watch baseball on TV with my dad or watch my brother Logan longboard. 

Arthritis also affects my school life a lot.  Mainly because I'm in a WHEELCHAIR school is hard.  Its not that kids make fun of me (but some do) it’s that they think since I'm in a wheelchair i can’t walk.  So when i do walk they act like it’s a miracle.  Then when i in it they all want to push me like it’s the coolest thing in the world.  The worst part is that everybody says I'm lucky that i get pushed around in a wheelchair when there the lucky ones.  First of all the wheelchair is the most uncomfortable thing ever and you never get to control where you get to go because someone else is controlling you.  Then secondly the price i pay to even be in the wheelchair in the first place is horrible!!  (Arthritis) Now that’s just the wheelchair situation there’s lots more troubles with arthritis and school.  Like the work.  Middle school is hard enough.  Lucky for me i go to a gifted school with all advanced classes.  Then on top of that i have the arthritis.  Doing the work i can do... turning it in on time not so much.  Then add in missing 173 days in the year you wonder if I'm cheating while getting straight A's but then you realize there is nobody to cheat off if you are not in school. 

But we have found some solutions... like having an IEP. An IEP is like an agreement with your school that lets me do things that other kids don't get to do… Like turning work in late; going to the clinic to take a nap; extended time on tests and quizzes; and even having someone come to the house to tutor me.  School has been very hard and we don't know what this year holds. on all my meds i can get sick very easily so i might have to wear a mask to school.  So there’s another thing that arthritis does to affect my life.  Then you have the MILLIONS of meds i have to take, some daily, some weekly and so on and so forth.  I have so many meds that i have meds for my meds and sometimes meds for those meds.  In the morning i take 7-8 pills 1 inhaler 2 nasal sprays and liquid.  At night i take 6-7 pills i inhaler and 2 nasal sprays.  Then every 3 days i get a patch on my back changed.  Every week i get a methotrexate shot.  Last but not least i drive up to Gainesville to get a bi weekly infusion called actemera.  It is a fairly new drug made for people with systemic arthritis.  Gosh I HATE meds!