Why I do it...

You:  "Why do you do this every year?"  Me: "Do what?"  You:  "Chair the Strollathon?" 

Well, to that question that I get quite often, here is my response :

My daughter is not "normal" by this world's standards.  She's considered disabled, handicapped, developmentally delayed....retarded.  Words that break my heart.   I know many of you have no idea what it's like to live our life.  So I'll let you in for a minute. 

I LONG to live a life of "normalcy"...whatever that is.  I would love to hear Isabella's voice...arguing with her brother, crying over not getting her way, asking "why" questions incessantly throughout the day.  Did you realize those were things to be thankful for?  I would LOVE to know if she really does like bright pink!  I would like to be able to call her inside for dinner after an afternoon of play...and she would come.   I want to go to her piano recitals, her dance recitals, her soccer games.  I want to cheer her on!  Well, that part I do still get to do!  And I do it whole-heartedly!

I cheer when she stays upright on the back of a horse.  I cheer when she steps up a step.  I cheer when she gets those little legs moving on the tread mill at 1 mph while supported by a bulky harness--because without one, she'd fall.  We cheer when she swallows her medicine or takes a bite of food. We get excited when she hits a switch to tell us about her day at school.  Those things bring us joy....

Her smile fills our hearts and her laugh makes even the angels dance!

Would I trade our situation?  Maybe.  What would I be trading it for?  No one would ever want to be affected by a disability--in whatever capacity! But are we mournful over what we don't have?  Well, sometimes, I guess...when we go to a park and see the little girls running and playing and squealing...or when we see a little girl running into her daddy's arms...or when we are at Cole's soccer game and hear people cheering for a girl on the team with her same name.  I let myself imagine they are cheering for my sweet girl...but only for a minute.  Any longer would be torture.

But don't pity us.  Don't feel sorry for us.  We find joy in our life every day!  In her eyes...in her special way of loving us.  One look in her eyes and my heart almost bursts.  Yes, we can still say God is good...all the time.

So...now you see...if just a glimpse.  So, why do I chair the Strollathon?  Well, there are days I wish I didn't have to...days I simply don't want to...days I get tired of asking people to donate, or volunteer.  I know you get tired of hearing it...believe me, I do too!  But I do it for my daughter.  I do it for every Rett Angel out there...because they can't.  They can't do so many things.  And with research progressing at such an amazing rate I simply cannot sit back and do nothing....and I hope you can't either.  This will be our 7th Strollathon...my 6th as it's chair.  Every year, I say it will be my last...but yet, here I am...again...

So yes, if you are reading this, I'm asking that you make a donation to my fundraising page at: http://www.firstgiving.com/fundraiser/petrinapate/roanoke-strollathon  Make a small donation or make a big one!  Every penny counts!  Or better yet, go to our main page here:  http://www.firstgiving.com/rettsyndrome/roanokestrollathon and set up your own page!  Even if you aren't able to attend the Strollathon...you can still be a virtual fundraiser!  Ask your friends and family to donate and be part of the CURE!  And feel free to pass along either link!

I have always said that my sweet girl will be healed from this awful thing we call Rett Syndrome...and she will...on this side of Heaven or the other....but right now, while we're all still waiting to be called home, my prayer is that God will use the researchers and scientists in a mighty way and bring that cure to our angels very soon.  It's going to happen...I just know it.  Won't you please be a part of it?  Donate today....for her....