Wednesday, July 16, 2014

Bittersweet Meet...

   Well hi there =).  For many of you who follow Joeli's Song, you also parent a neutrohero.  I see your lives via social networking and have often wondered if I'd ever find myself face to face with any of you.  Last weekend I did.  For those of you who aren't a part of the neutro family but follow and support and possibly love someone who is, I'm referring to the National Neutropenia Network's family conference held in Ann Arbor, Michigan this year.  I've attended several of these conference but this year was very different.  This year Brelan and Mileigh were old enough to attend the kids camp so they made the trip with me.  We car pooled with a sweet neutro friend of mine and her son and the trip has been amazing.  Also, this conference was a first since Joeli's Song was launched in the blogging world.  Often, in the midst of conferences, I've found myself quiet and alone.  This conference was far from quiet and alone.  So many of you found your way to me, hugged me, talked to me, cried with me, oohed and ahhed over my girls, and remembered the angel who made me the mama I am.  Thank you!  
   There were so many new faces this year...so much so that it was record numbers for the National Neutropenia Network.  Your hard work in raising awareness is paying off!!!  You're being heard and what a difference it has and will continue to make!  Sing Loud!!  There was talk of the device for at home cbc testing and a future oral medication in place of injections.  How I long for the day that our babies no longer require sticks daily.  
  Brelan, my non neutro, was very apprehensive about attending because of a couple of reasons...1. she isn't "sick" and 2. she'd never been.  I reassured her there were other siblings attending who weren't sick either but who loved their brother or sister who was.  She quickly connected with a friend in kids camp and ironically enough this friend is exactly the age of Brelan's big sister Joeli (10).  If that ain't a God thing, I don't know what is.  It brought tears to my eyes to see the two of them chat and play.  It brought a happiness to my heart that has been gone for so long.  It will never be the same but I know that my Joeli was all over that place and made divine appointments to comfort her baby sisters.  
  To you mamas, and you know who you are, thank you for loving me and my girls.  Thank you for stepping out of your comfort zones to talk to us and love on us.  It truly meant the world and made more of a difference than you'll ever know.  
  Since the conference ended on Sunday, we've stayed in town to visit with more of our neutro family and what a blessing it has been.  Our stay ends tomorrow and we will head back into our world where neutropenia isn't common place any longer.  The week has been full of coffee, hugs, talks that last into the morning hours, plenty of syringes and neupogen ;), and memories that I'll hold close to my heart forever.  I've watched our children play and love like all is well...I suppose for them it is.  I pray and search and raise awareness in hopes of a cure for our children.  I pray that I live to see the day that our neutroheros are no longer neutro.  I've had more profound moments in these last 7 days than I can count.  Joeli has made her presence known all around.  It's surreal when I think about it.  It sends me reeling back to the name that many of you have so lovingly given her "the guardian angel of neutro kids".  She was certainly with our kids during this time and she has sure been with her mama.  I am so honored to be called "Mama" by Joeli, Brelan, and Mileigh.  I am so honored to call so many of you "friend" and I'll be forever grateful for those of you who keep your hands at my back pushing me forward as I make Joeli's Song heard.
  Don't give up...keep fighting and keep singing.  Keep in touch, open up, you never know who you might be holding up!  Be Blessed!