Tuesday, May 7, 2013

So Many Thoughts…

As a family, we have chosen to openly share our journey with juvenile arthritis.  This was both a difficult decision and an easy decision.  Difficult because in some ways it leaves us vulnerable and somewhat open to “judgments” and “opinions”; however, we know there is a great need for awareness and advocacy.  Many are often shocked when I tell them that I have rheumatoid arthritis because I am “too young”…you can imagine their greater shock when they find out that our children have JA.

Each family that is impacted by JA has their own story, their own coping strategies, their own experiences…but we all have one thing very much in common…we all have a child whose life is impacted by an autoimmune disease.  All of our children are “children first”…they have dreams of children…they want friends; they need their education; they long to play.  As parents we try to provide them with the best opportunities we possibly can between therapies, hospital visits, doctor appointments, procedures, infusions, etc.
Lately, I have been pondering how perceptions are shaped by our experiences.  How we perceive situations based on our “view” will either allow us to take on another’s perspective or not.  There are moments when either my husband or I have been misunderstood; and we have also witness our children being misunderstood.  For instance, during our last hospital stay one might say “Parker was not very nice or he was not coping well” and in that moment probably not.  However, what was not immediately apparent were all the circumstances surrounding that situation.  It takes great skill to look at the bigger picture and try to understand the whole situation and to understand his perspective.  And please don’t misunderstand me…we still asked him to reflect on his actions and apologize.  When others take the time to truly understand, that is when the miracles have the ability to happen.  I do believe that social-emotional support is just as important as the medical treatment.

I know we are not perfect…no one is…I know we are making some mistakes along the way…that is our opportunity to learn.  And I am sure we will continue to make mistakes just as I am sure we will continue to learn.  We are dealing with an autoimmune disease umbrella that has limited answers and much uncertainty.
We have learned many lessons through this disease and our appreciation for life is greater.  We know that simplicity is golden.  We enjoy the breeze in the air a little more.  We feel the depth of love with deeper affection.  We cherish naps full of dreams.  We cuddle just because.  We celebrate laughter often, even when it’s through a few tears.

Do I wish none of this had ever happened?  Sometimes…we have felt and witnessed great anger, sadness, and pain.  But sometimes I think, but then we would not have met some of the most amazing individuals on this planet…who just show love without having to be asked…The human spirit is quite remarkable.
We want to tell everyone thank you for joining us in this journey, for supporting us during our fundraising and walks, for listening, for celebrating with us and for cheering us on.  We advocate for our family and all the children with autoimmune diseases in hopes that a cure will come for each and every child.

We are thankful that we have a support network that is willing to walk alongside of us…even when we don’t know where we are going.  We appreciate your willingness to simply just “be” with us.  Our family pulls profound inspiration from your support and together we are stronger…

Much love from the Lentini family (A.K.A. The Purple Playas)


  1. The beautiful thing about this is that it is another circle. People rally behind you all because you are all so inspirational, so positive, generous and caring. We all have our moments of weakness- everyone has a bad moment or two- but overall, your family lifts people up and inspires them to do better, be better, and help to support you. Not an easy feat! Perhaps that is why people who go through so much are often changed, like the cancer patients who feel like they have a new lease on life once they hit remission. In any case, thank YOU all for just being there, and being you.

  2. this road we travel is not an easy one, but I agree with you, it has given us a lot of good as well. My daughter would not have been the caring, compassionate little fire cracker that she is today had it not been for her journey. To me it is a bit like childbirth:It hurts, is uncomfortable and embarrassing at times, but the good that comes out of it makes the bad easier to carry and forget.If you happened to have read my latest blog post you may know we are now potentially dealing with my son having JA as well ( we are in the middle of testing). I was not happy with this as you can imagine, but knowing we have walked this walk before makes it a bit easier to do it again. I appreciate your stories, keep sharing them, the good and the bad!