Monday, April 23, 2012

Open minds and open hearts bring openings for possibilities!

I want it all to go away today…no more JA!  My heart breaks for my son.  It seems that no matter how hard we try to insert normalcy or fun moments into our lives the price Parker pays scares me. 

We want him to walk.  We want him to be active.  We want him to play.  As he should...  But there is such a fine line between the joy it brings and the misery that follows. 

Don’t get me wrong please…we are happy about so much (as you can read in the previous post), but this yo-yo life is so difficult to witness.  Only Parker LIVES it…we need to continue to raise awareness.  These children need a voice that is loud and proud!

We know that people don’t want to hear about depressing things.  We know that people don’t desire to experience heart ache.  We know that life is going on all around us and there is much beauty in life.  We actually feel that our hardships have taught us to appreciate life’s beauty all the more because when simplicity and good health is no longer…you cherish the moments of joy.  They are truly blessed moments…

But I want ALL to know, to listen, to understand the depth of what our family (and many other families) are dealing with in the privacy of their own homes.  This last week was extremely hard for Parker…again…As many of you know, he is now in hospital homebound.  This week was FCAT week.  He could barely get through the three mornings of testing, not because the content was too hard, but the mere fact that he had to “do it”.  He not only completed the testing in intense pain, but also through his incredible fatigue.  He fell asleep during testing, but also on the ride home, and again once we got home.  (Yes, we know that he can be tested at home…but they thought he could handle it at the test site and we wanted to try.  Parker wanted to try.) 

Parker barely did anything Friday or Saturday following FCAT.  But when he asked if a friend could spend the night Saturday we jumped on it and he did.  He had so much fun with his friend playing video games and chatting.  And hopefully we didn’t scare him too much with the infusions he witnessed. 

Parker then rested all Sunday morning to prepare for our Sunday afternoon fundraising event.  He insisted on going.  He took extra morphine, slept all the way there and he was a complete hit!  I really don’t know how he revved up the energy to be engaging and gracious with everyone who came out to support HIM; but he did it with a smile.  And he has been crashing ever since.  HARD.

When he was getting ready for bed he said to me that it didn’t matter how much money he raised today because he taught some strangers about juvenile arthritis and one of them was an old dude and his old dude friend.  I just love this kid.  He just wants people to KNOW that kids get this and it is an AUTOIMMUNE disease…it is not osteoarthritis!  He is so very strong. 

This disease is devious and deceiving…Parker can look fine on the outside, his spirits can even be high and then in the split of an instance things can change…and we never know when it’s going to hit.  This year we have learned a lot about this disease…one thing that we have learned that I didn’t want to learn is that few children with systemic juvenile ever go into un-medicated remission.  We have also seen children pass away from this form of JA.  That thought totally takes my breath away.  It makes me pause and truly appreciate every single God given moment we have on this planet together.  But the gifts we have are endless…we have seen when people open their minds (to accept this disease for what it really is), with open hearts (to show the love), then opportunities open up to endless possibilities…

I end with “William’s Wish” we prepare for our own local Arthritis Foundation’s walk.  William’s family is forever in my prayers and heart.  Rest in loving peace sweet dear William.  Please click on the link below…

Much love to each of you and may your heart and mind always be open!

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