Wednesday, August 24, 2011

me complaining with some cute videos at the end

To say that Delilah did a poor job sharing Jonah's story and telling how great Brenner is would be an understatement. We listened to her show for two and a half hours all for her to say the following in about ten seconds:

(the transcript from last night, which is posted on her website today)

We all imagine babies being born with the softest skin, 
and swaddling them in soft baby blankets as soon as they come into this world.

In my travels and time with the doctors and nurses working with 
Children's Hospitals and Together For Kid's, their national organization, 
I've come to know it doesn't always work that way. 
Take little Jonah for instance;  He was born with portions of his little body 
without fully developed skin, let alone soft skin.

Doctors at Brenner children's Hospitals went to work immediately 
on finding the right proteins to feed Jonah. Now he's two years old and 
living at home, with his parents so convicted to care for him and so 
grateful that God chose them to be his parents.

The support that families receive from Together for Kid's hospitals across 
the nation is one of the wonderful things I observe when I visit. 
You can support that with a gift of $10 by texting to a certain 
number from your cell phone. Write this number down:

When you text "T and the number four and the word 'Kids', to 8 5 9 4 4, 
and reply with the word, 'yes', you make it possible for Jonah and many 
other children to receive this kind of miracle treatment.

Thank you for doing so!

Um, WHAT? The doctors immediately started working on proteins to feed him? 
No mention of EB, blisters, bandages, or the great job Brenner did 
(and what they really did) to help him. Anyway, it's just frustrating because 
I read and approved the great story Brenner put together and submitted. And it 
seems like they just didn't even take the time to read it at all. I just feel like 
she had an amazing opportunity and a big responsibility to make a difference 
and could have really made this story and the other one she told (in which she 
called the child, Nathaniel, "Nathan" on the air) very powerful and raised lots of 
awareness and money for the children's hospitals. Oh well. 

On to other things.

Even though I get frustrated with being at home all the time, even though 
most of our weeks we only go to church on Sundays, to get my allergy shots 
on Thursdays, and an occasional trip to Target or the grocery store if we're 
feeling crazy, I'm still thankful to be at home. So I can treasure moments like 

(jonah watching this video from his birthday last year)

(jonah watching an episode of tom and jerry. this one's from today.)

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