Welcome to Hope Rising!

'When you have come to the edge Of all light that you know, And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly'
Author Unknown.

Through this journey, no matter what we've faced....our Faith has taught us how to 'stand' and 'how to fly'

Please join us on our journey of Hope. Some times we are 'standing' and some times we are 'flying' - but one thing is for sure....our two amazing children (Will and Sasha) have been the biggest blessings in our lives.
While they struggle through life-threatening illnesses, they also show us how incredible life truly is. Their joy, laughter, fierceness, and tender spirits lift us and carry us through any storm we've had to weather!

Sunday, March 8, 2009

Almost there!!!!

Hi everyone! We are exactly 4 hours 43 minutes out from Woodstock, GA (according to the Magellan). Last night we stayed in Woodstock, VA (gotta love the irony in that!). We got to the hotel at about 10 and it took us til about 10:30ish to get everything up in the room that we needed. The kids were WILD despite our best efforts to keep them quiet. We ended up getting a call from the front desk...apparently the room next to us felt there was too much 'banging' (which would have been Sasha hopping around like a maniac). I told them I was trying my best to keep them quiet but they had been in a car for 12 hours and they were just happy to be out of it. I also told them that maybe they needed to make their walls a bit thicker (I didn't think it was THAT loud!). Sigh....anyway, Sasha would NOT fall asleep - it was about 12:00/12:30 before she fell asleep. Will fell asleep by 11:30 - but he kept saying that he was itchy.
We woke up at 8am - Will's eyes were swollen and he was sniffling like mad - Ralph took the kids to eat breakfast and I got the kids aerobeds packed up. When they came back from breakfast it was time to shower them. I realized that he had a rash from head to toe - poor kiddo...
I gave him benadryl and we headed out. The Magellan took us down I-81 through VA - and, I am SO happy to say that after what feels like ETERNITY in VA - we are now in NC.
I was going to upload more pics from today but I am a little bit challenged when it comes to computer equipment. My card reader wants to RE-load the pics from yesterday AND the new ones and I don't have the option to just 'upload new pics' BAH!!!!
We HOPE to be at our cousin's house by 7pm. It's ABSOLUTELY gorgeous out - mid 70's and VERY sunny (I'm actually hiding under a blanket (sweating my face off) with the laptop because I can't see the screen any other way! ;)
Sasha has been saying that she has to pee and poop literally the entire day....her medicine that she takes for the episodic ataxia type 2/familial hemiplegic migraine is also a diuretic. We never really realized just how much she peed until these past two days - it's like every half hour or so...which makes 'making good time' quite an issue!!!!!
I will update again (hopefully with pics) once we get to Georgia!!!! We're about to make ANOTHER pit stop for Sasha.....

My heart is sad because another Mito baby has earned his wings - Brody was the most amazing and courageous little boy and he was taken from this earth entirely too soon at just under 2 years of age. Please pray for Brody's family - for comfort, peace, and strength. To see what that wonderful family went through because of Mitochondrial disease just makes me THAT much more determined to do SOMETHING.....

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