Sunday, July 20, 2014

I Can See with my Heart…

In trying to “escape”, all becomes clearer.  I could focus on one moment at a time…  I was not “looking” for clarity, but it found me, through my heart.  Juvenile Arthritis is not something our family can “escape”… but it is our gift.

I often hear:  “I have JA, but it does not have me” or “My disease does not define me…”  I find both of these statements interesting.  I do believe that we are always PEOPLE first!  I do believe disease shouldn’t define you or “have you” and yet…even in moments when we try to “forget” or “escape” and just “be”, it is deeply entrenched in OUR lives.

I believe our family has somehow become stronger because of JA.  And we must “identify with it”.  It obviously is impacting us.  Three out of four of us have autoimmune and immune issues.  We must live with it…we cannot escape it. Yet…JA is only part of our lives.  We are a family; my kids have many talents; my husband and I both work with passion and drive; our family shares much love and fun with our family and friends who give it right back to us and fill us up with strength and joy.  We are blessed!

Our summer vacations are now built around the JA Conference each year.  This year, JA brought us to Colorado.  We were fortunate enough to be a family who the Arthritis Foundation helped fund going to this beautiful event and location.  This year was the 30th anniversary of the
30th Anniversary Tree planted by AF
JA Conference and over 1,000 people went back to where it all started, 30 years ago, with one mother’s dream who lead the way.  Back then, the conference started with just over 100 people…and now it is stronger and larger than ever.  I had the amazing honor of meeting this mom, Dawn Hafeli, and we talked about the then and now.  She was so pleased to hear how well Logan was doing, a little surprised that I too had RA and Graves, but you could see the concern on her face when she asked about Parker and I shared all that Parker has endured.  Yes, we have come very far with medicine.  There are options that never existed before…but we have absolutely no idea of the long term effects that these biologics, chemo drugs, anti-organ rejection drugs, and other treatments and what they will do to our children’s bodies.  We have become a generation of HOPE…dealing with the present time…the most urgent need…the lifesaving decisions…with the HOPE that it will be ok in the future, not looking too far ahead and trying not to ponder on the past…just escaping in the moment and living.

And oh how we lived it up in Colorado!  Conference is an amazing experience.  We had the opportunity to connect with our “extended JA family”, share what has worked and not worked, watch our children with JA and their siblings connect and smile through their joy, learn about the disease and treatment, shed a few tears of joy and sadness, and to feel hopeful through many stories.  I am always incredibly amazed and eternally grateful for all the volunteers who coordinate this event and to the medical staff who give of their time and expertise.  It is humbling and empowering.

There were three individuals who personally impacted me and my family a great deal on this trip.  We felt that we were meant to be in these moments with these individuals to “see with our hearts”.  Parker got very sick on Saturday during the conference and had to go back to the room with some very concerning stuff that I won’t get into because it is too personal…But because he went back to rest, he missed the one speaker he wanted to see the most.  As he put it…he wanted to see the “lady who could take her eye out”.  Yes, that news spread through the kids’ rooms like wild fire. 

The conference had ended and was all packed up.  As we walked outside, our little friend, Sadie, took my hand to take me over to introduce me to her new friend…”the lady who could take her eye out”… Joy!  I am sure Joy hears this all the time, but she exudes Joy and she does justice to the definition of JOY!  She was surrounded by her amazing family.  Like me, she is a mom with RA (really she grew up with JA) and has two children with autoimmune JA and she has an incredible supportive husband who stood by her side.  Joy grew up with JA and as a result has uveitis.  It took her vision from her but she sees more clearly than most people I know.  As our families talked with Joy, she explained what she has gone through, introduced us to her guide dog, and showed us her prosthetic eyes…and yes, Parker held them as Michael totally wigged out and had to look away.  That made us all crack up laughing. 

Joy then knelt down and listened to Parker’s every question and talked to him about his current vision problems with such care and love that she pulled me deep into her heart.  She knew…she knew what he felt, what he was thinking, what he was scared of…but she also deeply knew what I felt, what I was thinking, and what I was scared of because her daughter also has uveitis.  She stood and started speaking from her mom heart.  Her words touched me to the core.  She could see me fully and clearly with her heart.  NO ONE has reached into my heart so deep before…and as she began to cry in front of me my tears flowed.  Joy reached for me and held me in such a warm hug as our bodies both supported each other in a free flow of momma tears…together, crying, loving, hugging, and knowing…The whole bunch of us…standing there in tears with such a huge exchange of LOVE that can only be seen with the heart.  Of course, Parker was crying hard by now and Joy shifted from me to comfort and reassure him.  I watched as her words and care cleansed my son who had been holding in so very much for so very long.  And in that moment, I was glad that Parker had missed her session with his group because this was far more impactful and meaningful.  This understanding was such a gift and has been inspiring my son ever since. 

The second individual who walked into our lives on this trip was not a stranger to us at all.  It was our sweet dear friend, Emily.  Emily also has systemic on-set JA and she has been a little mentor to me and a buddy to Parker.  In the beginning of this journey we met Emily at our very first conference in DC and we fell in love with her.  Ever since, our two families have been very close even though there is quite a few miles between us.  Emily did an amazing thing for kids with JA and their families…because she is amazing herself!  She hosted a golf tournament to raise funds for the Arthritis Foundation and High-5-Club.  At the conference, she surprised Parker and Sadie by presenting them with a check for High-5 for $2,500.  This gal has one mighty big heart!  She always has touched me with her contagious smile and I was so deeply touched by her excitement and love and her desire to help others.  We love you Emily!  You deserve the hugest of High-5’s!  And I am so glad you and your family got to spend time with us snow tubing and just hanging out.

First snow balls ever!












The third individual who allowed me to see with such clarity through their heart and love was quite unexpected.  In fact, we didn’t even see him in Keystone at the conference, but rather in Denver before heading home.  I got a Facebook message from his wife asking if we were in Colorado.  She had recognized the landscape…and get this, they live in Orlando, Florida but were in Denver for a benefit and wanted to meet us for dinner.  This was one of those moments when I realized we were exactly where we needed to be in this very moment.  So, we met George and Lisa for dinner far away from home…it was such a nice time because so often we see them at Arthritis Foundation events or the Parrott Head’s Fruitcakes in the Alley (they host the event) but we never really get to just sit and talk.  We started to tell them all about the conference and what fun we had in Keystone and that the boys saw snow for the first time and that we went snow tubing in the summer!  We shared how we met Joy and how amazing Emily was for raising funds… and then Michael told them that I was the chair for 2015 JA Conference; and it was going to be in Orlando! 

Lisa & George at Fruitcakes in the Alley
Well, talk about being in the right place at the right time…they asked more questions and they graciously offered to help!  This dynamic duo is quite the pair and anyone who lives in Florida knows why…every year they put on the Fruitcakes in the Alley bowling “party”…It is definitely a “party with a purpose” and they donate all the proceeds to the Arthritis Foundation in George’s daughter’s name.  His daughter, Jenny, passed away from systemic on-set JA.  When this group parties, it is for a major purpose…they know all too well the devastation that this disease can bring.  This was the very first time we got into a deeper conversation about Jenny.  Parker asked many questions.  I sat there in complete awe…Parker asking questions; and George kindly and lovingly answering… I could not even begin to imagine how hard that conversation was for BOTH of them.  And yet, George shared with such care telling us the struggles that Jenny endured and the things she overcame with such bravery.  A few things really impacted me…one, Jenny was driven to succeed and made incredible grades in school.  Two, she had every joint replaced…both shoulders, both hips, both knees, ankles, hands/fingers, feet, jaw…I can’t even begin to imagine that pain.  And three, she participated in first of the biologic drug studies.  I keep thinking how strong and brave both she and Parker were to do these studies that clearly are impacting future children’s lives.  And here, in front of me, sat this strong and caring father who has lost his most precious gift in the whole world; and he was giving my child the gift of life…through his daughter.  And he continues to give the gift of life…their team, the Parrot Heads, were the number one team in Florida this year raising over $30,000 …with dollars going towards family stipends to attend the JA Conference, funds making it possible for children to go to camp and enjoy “just being a kid” in a safe environment, and money towards a CURE.  I can see with my heart…love is in everyone and Jenny and George continue to share that love.

After reading all of this to Parker, he asked me to add this paragraph he wrote about the 4th person who really impacted him.  Please read below:


Recently I went on vacation to Colorado. I went there partly for the JRA conference but also for a family vacation.  In the beginning, it was pretty normal, just like the other conferences; but as we got into it, it got even better. On the last day of the conference, I met one of my brother’s friends, Kristen. Kristen is 20, so I was confused as to why he was introducing me to her. As we got to talking, we ended up having a lot in common. Then she told me she is starting Hizentra.  Hizentra is like IVIG but you give it to yourself once a week at home in your stomach with 3 needle probes that are attached to an infusion pump. Kristen told me she was nervous about starting it.  I was doing mine later that day; so she asked me if she could watch. So of course I said yes. Later that day, Logan called her to come over. We ended up showing her how to do the Hizentra infusion and I even made her poke me with the needles… she was freaking out but she did it. After we were done, she said she felt better about it now. When we were waiting for it to finish, we talked and really got to know each other. Then we finished and I made her take the needles out. I really felt like I connected with her.  Thanks Kristen, my Hizentra buddy forever!!
P.S Then we played golf I won.


 We had an amazing trip and this year my aunt and uncle came with us to learn more about JA.  It was a wonderful time in Colorado.  Enjoy our pictures...
Keystone with Aunt Sandy and Uncle John 
JA warrior BBQ after the Conference
The Hoe Down

New Skate Boards



Smiles light up the room
Snow Tubing 
Silly pose

Love Land Pass

Lunch in Breckenridge at Kobe's

Hanging out in Breckenridge

80's Dinner

Miniature Golf

Roller Coaster Fun

Denver Botanical Gardens with Chahuly Exhibit

Snow Tubing

Aunt Sandy and Logan


High-5 to the Assistance Fund for donating to the AF!

Practicing our "Florida"  Announcement

The kids announcing that the 2015 conference is in Orlando, Florida


We went snow tubing with the Tonnings.



Colleen and Rochelle
Logan and Caitlyn




















Vail Trail




















Our Elevator Buddies....
Jennifer made us shirts this year!  How cool is that!  JA brought us together and the elevator made us life-long friends. And finally, enjoy the video of my wish for all kids with JA.
video