Friends Forever

Last night Parker decided to write down his thoughts after the JA Family Fun Day and then he asked me to post it on the blog.

This morning I woke up in a ton of pain. It wasn’t a surprise because I have been hurting really bad. But today I had to push through it because it was the family beach day thing. I slept the whole way there and really didn’t want to go. When we got there I still wanted to go home. But I started hanging out with my friends and things started to get better. There was one specific friend that I really connect with. And the whole day was ok when I was hanging out with her and my other friends. The best part of the day was that I won the best-dressed contest. I also got second place in a watermelon-eating contest. I ended up doing sooooooo much and now I’m in even more pain. After the fun though I still feel terrible. But remember your friends make everything better.

Cards for a Cause!

There are really amazing big-hearted people in this world!  I have been blessed to meet one such person, Helene Graziano.  Helene heard about Parker through a friend of mine who was sharing to raise awareness about juvenile arthritis.  My friend, Denise, told Helene about Parker’s giving heart and how another mom, Dawn Veselka, and I had started a non-profit to benefit children with chronic illness like Parker and Sadie (Dawn’s daughter).

www.helenespapercrafting.com
 

Helene and her daughter

Helene was very excited to hear about this because she has a business called Helene’s Papercrafting with “Stampin’ Up”.  Their new theme is “Making the Difference”.  Well, this new theme lead her to recruit her family’s help and set up a weekend card crafting marathon to benefit our non-profit, the High-5-Club.  Helene wanted to make a difference for children with chronic illness like Parker and their families.

Rochelle giving Helene a
High-Five

Now, what you need to understand is that Dawn and I have been working hard just to jump start High-5-Club and we only have a Facebook page, https://www.facebook.com/high5cluborg?fref=ts,  and a website landing page, www.high-5-club.com, so far.  We are a brand new non-profit with a 501c3.  We are still just trying to get everything lined up and along comes Helene who made High-5-Club her first official benefit event!  I just couldn’t believe it!

I went to the final of four card making sessions that she hosted.  As soon as I entered, I could feel the warmth of her heart.  Helene and her daughter greeted us all and guided us through such fun card crafts.  I knew I was there because of the benefit, but what I didn’t know was what fun it would be.  It was like I was transported away from my stress and I found myself relaxing, giggling, teasing, and conversing with an amazing group of women who were all there, not only to learn and craft, but to also give back to their community and make a difference.  I am thankful to each and every one of them.

At one point, Helene shared why she went into this business and she shared that she was drawn to it because she was a social worker; and what she liked about paper crafting was that it allowed for her to build relationships.  Her words resonated with me a great deal and as she spoke about how impressed she was with children like Parker; she took my breath away.  She was incredibly genuine and in that moment I was thinking how we are all interconnected and the relationships we build are the greatest gifts in this world.  The human spirit…the love we share…this is what pushes us on.

Helene donated $600 to the High-5-Club.  A huge “high five” goes out to her for our official first benefit and first donation. Yet, Helene has given much more through her kindness.  We are so very thankful.

 

Love Connects Us

Epcot Perry
Scavenger Hunt

Logan and Dad at Concert

Raising a child with chronic illness has taught us much.  We have learned how to reflect on our family strengths and weaknesses.  Ironically, I have learned that my biggest weakness is also my strength.  Sometimes I “care” too much.  Caring leaves me vulnerable, but it also makes me human. 

I care about all children, all families, people, my family, my children…  Caring has made me who I am and who I will become.  I am thankful that I care, but caring means we open ourselves up to multiple emotions and that can include not only joy and love, but also hurt and sadness. 

Recently, I have been deeply hurt.  I have learned that there are some, who we thought cared about our brave children, but have acted with cruelty.  A small group has been bullying and making fun of parents and their children with JA.  The sadder realization was to learn they too have children with JA.  I have to admit, this really shocked me and it absolutely choked me up as I held back tears…tears for every family and for the poor mom who witnessed meanness against her own child.  My instant reaction was to break away from all social media and groups and focus only on myself, my husband, and my children.  For several weeks I couldn’t even post, blog, or communicate with others about this because I “care”…I have always cared what others think, feel.

I choose to be open to my emotions…feelings drive me forward and push me to be determined to overcome.  The depth of my emotions continue to teach me many lessons:  judgment is inevitable; challenges present themselves; and we will fall, but we can pick ourselves up.  As I ponder these lessons and as our family faces our challenges, we allow ourselves to feel and then let go…moving through these emotions brings a sense of peace.  Our peace fills us with strength and our love propels us forward.  And as long as we act with love in our heart, it may leave us vulnerable, but at least we are being true.

Because our family cares so much, we are given the amazing and powerful gift of love.  We love each other dearly, but this love also connects us to others.  It is with others that we can battle this incredibly beastly disease and still enjoy life.  We are so incredibly thankful to the many that have rallied around our family. 

Gaming with Troy during weekly infusioon

I will admit, the beast of JA does try to stop us…and it can feel relentless at times.  But after we move through the appointments, tests, treatments, and therapies we try to insert a little fun.  Sometimes that fun is within the walls of our own home…other times we make an outing of it. We treasure these moments with each other, family, and friends.

I am happy to report that Parker’s labs are much better and overall his strength is getting better and pain is less many days.  We are slowly decreasing some of his meds and increasing his activity level.  We are still battling pulmonary issues and we do have a few set-backs from time-to-time but overall there is improvement and we will continue to support him as he takes baby steps forward so he can begin to run circles again.  He has a goal to go back to school full time next year, as he enters the ninth grade. 

Logan went to the orthopedic doctor and he does have mild scoliosis.  We will monitor it and he is starting PT next week.  Logan has just completed 10^th grade and on Monday he will be a freshman at the community college.  He has chosen to take 2 classes this summer and will continue to be dually enrolled for the rest of high school.  This is something he really wanted to do and he is so thrilled that he went down to the campus today to check it out and find where his class will be.

You are my master,
 I love you so!
SQUIRREL

We are grateful to experience the love we have.  Love is such a gift.  It strengthens us and fuels our dreams and hopes. Love connects us.   I really do believe that together we are better!