Wednesday, March 5, 2014

What we have been up to...

I know that it has been a while.  We have had a whirlwind of activity since the senate meeting.  The meeting that only a handful of senators attended while the other senators meandered around the senate floor talking about personal stuff, you know catching up with their pals.  The support from the people there to hear our testimonies and the talks from the doctors, growers, and scientists were awesome!  It was an emotional and yet thorough and educational presentation.  And still the hosting senator said that he would not support such legislation.  One of the legislators wouldn't even attend the meeting because "his church wouldn't approve."  Not because his constituents wouldn't approve, but his own church.  Basically, his friends.  But, Rome wasn't built in a day was it?

Following that meeting we have had some exciting doors open in Colorado and our quest to go.  We have one more major road block and that is having proper transportation for both of us so that Brendan and the kids here can go to work, school, appointments etc and one for myself and the kids with me to go to Colorado and do the same.  So while we are praying over this area and waiting for God's guidance we have been selling things and donating lots of other things so that we will be ready to live in two apartments versus one house.  Part of this is sad because I am letting go of things like scrapbook supplies because lets face it, I haven't had a chance to scrapbook in years!  Or the passing on of my sewing machine that is just a few years old.  But again, this is not a priority in my life right now and anything that we can sell to support Gracie's care or donate to someone who needs it….well that is what we will do.

On the same note as a vehicle I had been mulling over the chance to enter a contest for a wheel chair van via the National Mobility Awareness Month program.  I kept going back and forth on if we would enter or not.  I didn't want to take away an opportunity for someone who is in a greater need than us.  However, Avagrace's condition is both degenerative and progressive.  We have been using her wheel chair more and more and she is 80lbs.  80lbs post seizure and during seizure feels like a whole lot more than that.  Plus she seizes in the car often and should be positioned properly when she is post-ictal.  But the biggest thing is that it is so unsafe and so difficult to transport her from car to chair and back and forth when she is having her rough days.  I have torn muscles to prove it.  So with the love and encouragement of a dear friend whose daughter is also 9 and is in a chair 24/7, she reminded me how much of a blessing it would be and how much more we would be able to do if Gracie had this luxury.  So, we made our video, submitted it and if we are chosen to compete we will have a link for everyone to go to and vote up to twice a day I believe.  So on March 11th if we have been chosen I will start asking everyone possible to get the word out and vote.  Can you imagine the joy?  We would be able to travel safely and efficiently as a family in a van that would be made specifically for our family!!!  And it would be ours to keep forever!!  I don't want to get my hopes up but the thought of this is beyond words.

So, getting Gracie to Colorado is still our absolute goal and it will happen.  The oil will do wonders for her I am so confident, and we will continue therapies and working hard to overcome what the oils do not.  And, God seems to be working fervently on having our family be together through all of this too!  But that is for another blog.  I promised also that I would publish Gracie's "Life list" or "2014 Goals List" just in case this really is "the final chapter."  So that is my goal for my next blog.  But I can tell you that this girl is a big dreamer and we have a lot of fun planned for this year.  AND…some of them have already been checked off!!  The best part is that all but two of her goals seem attainable.  But one of her goals is to go and hang out with her (and the rest of our) favorite youtube family…I can't imagine this actually happening, but you never know.  I figure I can send an email and a few tweets and see what they say right?

The other thing that I want to share with you is we have another fundraiser happening right now!  It is AWESOME and just in time for EASTER!  If you are looking for a sweet stuffed bunny for your child or yourself for Easter, than look no farther than my friends Scentsy website.  The bunny is Lavender and not only will you be helping AVAGRACE but you will also be helping one of our favorite organizations the March of Dimes!!  We have had two preemies and when I saw this bunny it couldn't be any more perfect.  SO if you want the best bunny ever, or anything scentsy, please stock up now.  Just go to https://thedalkes.scentsy.us/Scentsy/Home and click on the "SHOP" and select "FUNDRAISER FOR AVAGRACE SPENCER" and there you go!  Fun right?

I hope that you all are having a wonderful week!  We had two snow days and I got to drive in snow tonight!  I love it!!  But then again, I live in Oklahoma but am a Pennsylvanian by birth so of course I don't mind snow!  However, Oklahoma is an over achiever.  We had 50-60 degree spring days then the very next day we had a thunder and lightening snow and hail storm with an earthquake too boot!  Oklahoma is never boring, that is for darn sure!

Alright, time to say goodnight!