Tuesday, June 7, 2011

Utter Excitement ... and then Defeat ....

So .... I did hear back from Magic ... and we managed to get some help with the costs of the conference...  I got so excited .... mostly thinking we were going to have a whole bunch of help with the conference fee ... the hotel ... and some of the other "extras" ...  but we only got most of the conference fee covers, and one night of the hotel.  Not what I was expecting, but still helpful! ... And then, I just became completely defeated ....  everyone is struggling, and the help just isn't out there .... which I can completely understand.   And we don't have the money to fundraise like we should in order to raise the money ..... 

I really really wanted to get Nathan there this year, he had (or could have had) a guaranteed appointment with DR. H...  who is the leading expert with Russell Silver Syndrome, based out of New York City (where it would cost more to get THERE, lol)  ... and who can give us a treatment plan that will best help Nathan to grow.  Which is something I want to happen as soon as possible....  and waiting a year seems like FOREVER .... but, it's something we're going to have to do.   We'll have a year to save (if we can) and to raise money for next year. 

This conference is an ongoing yearly thing.  We don't expect to go every year, but we do want to make it there once.  Once so we can learn and get to know families and to get Nathan the help he needs. 

Anyway, so we have a nice little start to our fund-raising endeavors for next July :)  

But, I have been getting some emails from the foundation, and I have read (some of) them and ignored them, which is something I don't normally do.  But I was so excited about going and .... now, I just felt so deflated that I closed them with every intention of responding, but I didn't.  Not something I'm proud of.   But I finally told them last night, we're going to have to pass on the scholarship and appointment this year.  There just isn't a way to get there for us right now.  I mean, if we were in Wisconsin still, no problem...  but we're half way across the country now. 

It will happen.  If I don't get Nathan to Dr. H ... I am doing him a complete injustice. 

Currently.... Nathan is eating Cheetos... thanks to his older brother in his teenage wisdom who offered it to him for breakfast.........

and I do the whole "Pick your battles Mommy" .... cuz if I take them away, he's gonna scream.  

So he's eating his Cheetos and what happens, his hands get dirty - go figure - and then I have to wipe them.... right? to make him better...  and THEN he's screaming at me because his hands are wet....  ha ha ha ... never win...

Cheetos Face himself!

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