Yes, We are Blooming with HOPE...

Last year, after the JA Conference, I visited the botanical gardens, and I saw this quote that spoke deeply to me…

“A flower does not compare to the flowers around it; it simply blossoms and blooms where it is planted. “

It is very hard not to compare…As parents, we see our children alongside their peers and friends.  We watch them grow together.  As a parent of children who both have juvenile arthritis, we can see differences in our kids' development when "comparing" them with children their same age.  We have seen them grow at different rates both physically and cognitively and in some ways through their social-emotional well being.  It is really difficult to observe the struggles that our children have to endure, but I do believe that it gives them a very unique perspective on live and has caused them to be in full bloom.

This life with JA is where our family was planted…this is where our family will bloom.  And with each new blossom we celebrate our Yeses…

Yes…After 2.5 years of hospital homebound, Parker is back in school.

Yes…Logan’s JA is under control and so are his migraines

Yes…Parker is walking more and using his wheelchair less

Yes…Logan is getting ready for college

Yes…Parker’s vision is restoring

Yes…Logan won the pinewood derby at the St. Louis JA Conference

Yes…Parker has friends who love him for him

Yes…Logan is an amazing guitar player

Yes…Parker is a great photographer

Yes…Michael and I are proud parents whose family has bloomed and grown to include many families impacted by JA.

Our JA family is one big beautiful bouquet.

I am getting so excited about this year’s Juvenile Arthritis Conference...There are many dedicated volunteers and AF staff working hard to make this annual event full of networking, education, and fun.  But as we worked hard this past week planning the schedule, I was reminded that there is nothing like the relationships that are built through these connections.   These people are giving, passionate, loving, and dedicated to working together to support families. 

And I adore the theme "HOPE Grows Here"...As we teamed together, it felt a little like we were tossing the weeds, planting the seeds, and nourishing our souls; so that we could watch our great big JA Family blossom and grow even more together. 

JA has a way of showing us what really matters.  It has taken a long time to truly feel like I have some deep roots, outstretching branches, and a good strong footing.  You see, JA is like that big storm that bashes at one’s heart. The STORM reminds us of our reality…but with each new family I meet and with every story shared, we not only share tears of sadness, but tears full of laughter and joy.  

That balance gives us that strong footing to grow stronger, love deeper, laugh harder.  YES…it is possible to find the joy in life and to choose to celebrate our victories great and small. For it is HOPE that makes it feel like YES is possible …for with each small victory we share we grow a little taller and stronger.

First we have to have HOPE, then we can champion our yeses.

Logan's Lovin' the Good Life ~By Logan

Everybody wants a good life. This may sound obvious, but it still renders true. So what exactly constitutes what is, and is not considered a good life? Well, this is a very subjective topic, which will surely have many different answers; I think that it all comes down to happiness. In order to have a good life, in my opinion, one must be happy.

            
Of all things, I have found happiness in helping others. When I was in seventh grade, my younger brother was diagnosed with systemic onset juvenile rheumatoid arthritis, a form of arthritis that not only attacks one’s joints, but also their internal organs. When I first learned about the severity of his disease, I was at a loss for words, but from that moment on I knew what I wanted to do; I wanted to become a pediatric rheumatologist. I immediately put this plan into action, by starting to volunteer at the Arthritis Foundation. Though the work may not have seemed like a lot to most, I knew that I was helping the Foundation in a large way. Soon they assigned me a larger task; they saw the leader in me, and asked me to organize an event for families to come together and network. I gladly accepted this task, and when I saw the smiles of the people attending the event I was ecstatic. Knowing that I could help people, and bring them joy made me the happiest person on the planet.

If we fast-forward a few years to the present, I am still helping people, but now on a national level. The arthritis foundation has made me a committee member on the young adult committee for the National Juvenile Arthritis Conference in 2015. Now I am bringing people together from across the country to network and advocate for juvenile arthritis. I feel like I am truly making a difference now, and changing people’s lives, for the better, along the way.

My undergraduate experience, however, will not prepare me for ‘the good life’ because I am already living that. On the other hand, college will prepare me for a better life, by helping me reach my ultimate goal of going into pediatric rheumatology. Once I become a pediatric rheumatologist, I will have a chance to eliminate the pain that hundreds of children suffer from on a daily basis, and that will make me the happiest person on the planet.           

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 30^th 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 4^th 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.

Summer Snapshots

For the first time ever, Parker has gone 3 months between rheumy visits.  This is pretty amazing.  It is so wonderful that we are able to do his shots and infusions at home now.  He and his brother, Logan, go back to the rheumatologist in a couple of weeks.  And after going to the Juvenile Arthritis Conference last week, we have questions regarding both the boys.

So it is a very good thing that we have the blessing of a 3 month span because we have been very busy with both boys at various medical specialists and therapies.  Sometimes I find it so very interesting how one thing gives, so that we can deal with something else. 


OT

For instance, Parker has graduated from OT.  We are so incredibly thankful to his occupational therapist, Jackie!  We will certainly miss her…and just as OT has ended, Parker AND Logan have started up with PT (well, second round for Parker).  We found a wonderful PT just about 2 miles from our house.  And I have a feeling that I am going to need to start up PT soon too; and they see both adults and children. With our very busy lives and school starting back up soon, this too is a huge blessing. 

Parker is now doing auqua therapy and biofeedback.  We are happy with the progress thus far.  Our main goal for him and for himself is to help him building his “coping skills” and also strength, since we know this disease is not going away.  He is slowly gaining strength and using his chair less and less…but it seems to come at a cost and that truly is completely discouraging at times.  But he knows that his choices have consequences and he is willing to endure in order to experience fun.

Parker got to experience Camp Boggy Creek!  And even though he was in bed for 4 days after, he said that it was totally worth it.  The joy that this camp experience brings him is so profound.  With a childhood full of medical stuff, this is one place he can concentrate on “just being a kid” and we know he will be ok.  Camp Boggy Creek is equipped with medical equipment, nurses and doctors…along with a wood workshop, lake, fishing/boating, horseback riding, a theater, pool, basketball court, archery, swimming, crafts, cooking, a talent show, chants, friendships,  a dance, and much much more!  They accommodate all his needs, including food allergies.  If he needs an emergency infusion, they are equipped for that too.  Camp Boggy Creek is one of Paul Newman’s Hole in the Wall “Serious Fun” camps.  Check out their website:  http://www.boggycreek.org/   We are so thankful that the Arthritis Foundation’s Florida Chapter sends children to camp every summer and also funds Family Retreat weekends.

Kids Get Arthritis Too

A week after Parker returned from camp, our family headed to California for the JA Conference.  Let me tell ya, traveling with medical issues is quite adventurous.  Obviously we took the wheelchair but we also needed a suitcase just for all our meds, the nebulizer, and the bi-pap machine.  Lots of vials with liquid and lots of shots…of course everything needed to be double checked at airport security.  Even the head of security came over to give us tips for travel.  He was super sweet and he looked relieved for us when I told him this was our “one trip” each year.  He said, “Oh good, you’re not frequent flyers…”  In that moment, I definitely concurred.  Remembering to administer all infusions/shots was also a challenge…but we did it.  However, he might be anemic again…he was bruising something horrible on this trip.  We also had to make sure that his vials stayed cold while we traveled and that we got a frig in our room (which we had to have serviced because it wasn’t running cold).  Then there was the “rental car”…it had to be not only big enough for us and our luggage but also the wheel chair, but it cannot be too new that we are allergic to new carpet.  This is why we don’t travel much….

The opening night, Deborah Snyder, one of the Producers of Man of Steel, spoke to the kids about how they are all heroes.  She struck a huge cord with Parker because she too has adult on-set systemic arthritis (also known as Still's Disease).  This is what Parker has.  She took time to meet Parker and talk to him.  That warmed my heart.



 

Every year at conference, we meet new families and our children make new bonds.  This year, Parker became more “independent” which was really something to witness as he and his buddies hung out together.  Logan and I signed up to be AF Ambassadors and he is really excited about this.  I told him if we are going to do this, he would have to be lead.  He can’t wait to get started.  We also tacked on some vacation time after the conference and got to visit with Michael’s cousin.  What a fun day in Hollywood.



Parker, with his bi-pap machine on,
 woke long enough to put his
3 infusion needles into his belly
and start his infusion pump. 

Since returning from our trip, we have adjusted Parker’s bi-pap machine yet again.  We are hoping that he will feel even more rested and build more endurance since in several weeks he is starting high school and is planning on joining his brother at his school.  The boys had both of their ophthalmology appointments and both have clear eyes…we found out today that if the JA attacked Logan’s eyes, he would feel it and his eyes would get red…but he said with Parker it is quite different and it will silently attack with no clues.  That is why Parker’s eyes are checked more often.  We also saw the pediatric endocrinologist.    This visit just reminded us, yet again, how serious Parker’s disease is but we were not shocked by what the doc had to say….drum roll…..he is too short.  Well, when a kid doesn’t grow in 4-5 years, I think we knew this was coming.  But he said that according to his bone age test he would put him at about 5’6” to 6’…with him currently being at 4’9” we are going to put in on the bed each night and Michael will grab his ankles and I will grab his wrists and we are just going to stretch him out…do you think that will work?  But seriously, this does mean more tests and he said it was pretty likely that he would put him on growth hormones.  Some of this “shortness” could be due to his disease but we are sure that the long term steroid use has also contributed considerably.  Parker is taking it in stride…he said that he can be “Chip or Dale” at Disney and maybe even “Mickey” and then he informed me that there is a “payment” that people who are under 5’2” get due to their shortness (I think he is thinking of disability…who knows…and how would he know this).

Every day I marvel at Parker’s strength.  He has faced many challenges and he continues to problem solve, push forward, and plow through it all.  I love that even though his body is “weak”; he is not letting it defeat him.  At the conference this year, the children were asked to dress up like a superhero.  Parker decided he was going to be Professor X from the X-Men.  He had his bald cap, black pants, black shirt, olive green suit jacket, and of course, his wheel chair.  Professor X is the leader of the X-Men and he teaches these “mutants” (as they are called) that although they are different; they have much to offer and each has unique talents that impact this world.  Professor X is also an advocate for equal rights where all could live together in harmony.  Parker even made a poster with favorite quotes from “Professor X” to put on the back of his wheelchair.  But on opening night, he went to put on his Professor X outfit and the pants didn’t fit.  He quickly changed gears (even though we knew he was quite upset about this) and he put on his “Robin” shirt and cape that he had for his day at Magic Mountain.  And he still put the quotes on the back of his wheelchair.  So in “Professor X” style, he went out with his head held high and had fun.