Wednesday, December 30, 2015

JA Lessons Learned

Being a mother is truly a gift.  This statement rings true for many…however, being a mother of a child with a chronic life-threatening illness is a gift that awards me with such deep teachings and gratitude for life and I want to share in my lessons learned.

I enjoy teaching so very much.  During my 10 years in a preschool classroom, teaching young ones with multiple disabilities, I always came home counting my blessings.  I was so grateful that I had two healthy beautiful boys, especially since it was uncertain I could even have children.  Both boys are my little miracles. 

Later, when I started working at that University, I was so wide-eyed and excited that I would be continuing my career as a teacher of teachers.  Daily, I marveled at what amazing teachers exist in this world…yet it was always the children that I learned the most from.  Recently, I have been doing much work coaching in classrooms.  There are so many young children with difficulties and those difficulties are quite the challenge for many adults.  I have been blessed with understanding the perspective of little ones and helping adults see things from their points of view.  But I am just a lens of sorts, bringing clarity …assisting adults to see things that were always there to see…

As an educator, teaching comes naturally …lessons are what we plan…  but as a mother of two children with juvenile arthritis, one with chronic serious issues, I have learned much deeper lessons.  These lessons are certainly not chosen and I most definitely didn’t look for them, but now I can clearly see them.  When Parker was diagnosed, I asked many questions, read many medical journals and even text books (yes, I ordered rheumatology text books…it’s what an “educator” does).  I researched so much that I started to re-read what I had already read…looking for answers and trying to understand as much as I could.  And yes, I learned much…much about treatment, disease, options…  Then, of course, there were some things I read that made me cry to the point of exhaustion.  And on the flip side, I even read about “cures” that made me laugh (…like, did you know gin soaked raisins can cure rheumatoid arthritis and at the car dealership you can get joint juice to ease the pain…); sometimes you have to laugh…

But the real lessons come with experiences.  Some lessons are painful.  JA has taught me who my real friends are and are not…and that in every walk of life there are mean people… and even when you try to do “right”, it can turn very very wrong.  But JA has also taught me that mean people might be processing tough stuff  and to love them through it…and what might feel wrong to some, might be very right for us.  

And my JA lens has shown me and my entire family that prayers full of love, acts filled with kindness, and joyful simplicity are amazing and to receive such gifts is truly life’s lessons.
I know that other mothers and fathers and siblings of children with chronic illness endure incredibly difficult journeys too.  I watch it every single day…  countless hours of worry, reveals faith… endless treatments, needle sticks, procedures, bring hope… pain, shows strength… mysteries, give patience… physical barriers and road blocks show us alternate paths…  but the greatest lesson of all is LOVE. 

I can see the love in doctors’ and nurses’ eyes as they tell us things we certainly don’t want to hear.  I also see love in their eyes when they celebrate the simplest of accomplishments.  I feel love from our friends and family with their notes, encouragement, acts of kindness, and prayers.  But the love between Michael, Logan, Parker and I …as we simply sit together, not saying a word, just being together…well that is true deep love and a lesson I gladly learn.
We are so grateful to Armanis Restaurant at the Tampa Hyatt for doing a wine tree fundraiser for Parker's Purple Playas.  

Tuesday, December 8, 2015

The CURE for Chronic Logan Lentini

Today, Logan posted this on Facebook and I think it is worthy of a blog post...

Incurable, it’s a word that some of us are far too familiar with, and quite frankly I am tired of hearing it. Obviously there are countless diseases that are incurable; diabetes, arthritis, lupus, fibromyalgia, cystic fibrosis, and many cancers, currently have no cure, just to name a few. For many chronic illnesses, symptoms are manageable, but in other cases the symptoms can be lethal. 

When health professionals verbalize that a disease is incurable it can do one of two things. From a patient’s perspective, hearing that word can potentially eliminate all aspects of normalcy from their life. To a non-patient, hearing that something is incurable can stir up a whirlwind of emotions, especially if the non-patient personally knows a patient battling chronic illness. However, saying that chronic illnesses are incurable is simply false. Though there may not currently be a cure for a specific disease, that doesn’t mean that there is no cure at all. 

This is amazing news; if you think about it, there is, in theory, a cure for every chronic illness known to man. All it takes for a cure to be discovered is the right person conducting the right research. The cure could lie in alternative medicine, or genetics, or somewhere else, but there is a cure. We are on the right track as a society to finding these cures too; many chronic illnesses are now manageable through pharmaceuticals, and various other methods. Knowing how to manage the symptoms of chronic illnesses is the first step to understanding them on a cellular level, which in turn will eventually lead to the discovery of a cure. 

Now I’m not saying that every chronic illness will have a known cure over night, or even over the next ten years, but I do believe that in this century we will find the answers that we are looking for. There is a solution to every problem, and there are cures to chronic illnesses. As long as we stay hopeful, and advocate for ourselves, the right person will eventually come to the table and make the discovery that we have been waiting for; the discovery that will change the world.