Sunday, October 30, 2011

It's been a very up and down weekend.

It has been a very up and down weekend.  On Saturday we had the JA connect day in Tampa, which Logan helped plan.  He did a great job, with help from Rochelle and the Arthritis Foundation.  We are so very proud of Logan and all he did to make this day so great.  He is such a great big brother. 
The day started on such a high note and well, life with JRA has a way of changing things.  Parker has been having a very difficult couple of weeks and hit rock bottom on Saturday.  One of his doctors was at the connect day and said we needed to take him in, to Shands in Gainesville.  So when we got home, we packed Parker a bag, and Rochelle packed, and they were off.  Not knowing how long they will be there, or what to expect, this is what we have become accustomed to.  Of course the usual to start, blood work, which came back fine, so we have that going for us.  X-rays of chest, knees, ankles, and back.  Still waiting to hear about those.  Now waiting on MRI's.  Doctors told Rochelle it could be something in addition to Arthritis.  Really!  Like Parker doesn't have enough to deal with.  This JRA thing is just not fair.
Rochelle is so strong and such a wonderful mother, she is always there for her boys.  I wish she (us, Logan, and of course Parker) did not have to deal with this. It is so hard to explain to people what we (mostly Parker) are going through.  They see Parker and they do not see the pain he goes through every day, hour, minute.  People do not know the "show" he puts on because he wants to be treated normal and make people feel good.  He wants to be like his friends, go to school, play, etc.  We (as a family) are now part of this" club", JRA, and not by choice.  Most people don't get it, and never will, get what we go through every day, but the "club” members do and their support is amazing.  I truly thank all of you.  I am not saying all don't get it.  I am merely saying not enough people understand JRA.  Which brings me back to Logan.  What he did this past Saturday, JA Connect day, was such a special event.  He worked on this event for 2 months and it was such a successful event. 
We now wait to hear what is next for Parker.  As hard as this is for him, it is just as hard for Rochelle.  As stated, she is so strong and I love her so much.  She is such a wonderful person.   So keep Parker in your thoughts.  Know that he has his mother, Rochelle one of best humans I know, with him.

1 comment:

  1. truly a testimony of love and support....i love you guys so much...i hope you know that. it is hard to understand your walk but know that i pray for parker and the family all of the time. it is not fair. no child should ever have to endure this much - i can't say any of it will ever make sense but know this -love shines the brightest in our weakest of times. when we are forced to deal with the bad we are sure to appreciate the good all the more. hang in there...prayers are coming.