Happy birthday to you…

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Happy birthday to you.
Happy fifteenth birthday dear Danny
Happy birthday to you.

We went through the ridiculously long line for fries…

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We picked up Dad who decided to play a bit of hookey from work to see ” fish”

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While we were lapping the aquarium three times….there were birthday elves (aka Kate and Jack ) hard at work at home.

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There was nothing left to do but have cake.

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Tomorrow, my biggest life lesson teacher turns fifteen….

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He has taught me patience that I didn’t know that I was capable of.

He has taught me to be fearless. That I will take on anybody to get him what he needs.

He has taught me that while others might have more initials behind their names than I do, there is nothing in this world that I am incapable of learning if it might benefit him.

He’s taught me what real work ethic looks like.

He has taught me tolerance. That I don’t know what someone may be facing behind whatever thoughtless comment.

He’s taught me, even though it’s a cliche, the joy is in slowing down and appreciating the journey.

All three kids hold my heart.

But he has taught me that I am so much more than I ever thought I would be.

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Tomorrow is the fifteenth anniversary of when I met my hero.

Happy 15th birthday Danny.

Today we spent our time doing my FAVORITE Christmas tradition…

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And yes, I realize that it’s not yet Thanksgiving.

But, many planets have to align….the weather has to cooperate, Danny can’t be sick, and there can’t be too much snow on the ground.

This year the planets all aligned today….we met the grandparents at the cabin.

:)

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Your favorite Martians have their mountain Christmas tree.

:)

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Danny’s story of our Mito label …

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Laura Marrs:

One of the research assistants I mention here now has her phd and is doing her part to educate the next generation of teachers. I heard from her this morning because one of her students came across a kid with mito and she wanted to share this blog post with them.

Danny turns fifteen on Monday. It’s been almost ten years since that first visit with Dr N. And while we still are searching for the genetic “smoking gun” he has improved so much on the cocktail. I shudder to think of where he might be had I not behaved like a pushy crazy mom.
:)

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Originally posted on lifeonmarrs:

Not everyone is reading all three parts of how we first heard of mitochondrial disease. Here it is all together.

In Losing Danny I spoke of how we first discovered autism.

Click here to read it again…

Now, let’s chat about the first time I heard the words Mitochondrial Disease.

Danny had these funny regressions.

Regression is thrown around a lot in the autism world, to get more therapy, you have to show a skill loss. That’s not what I am talking about here. Danny would literally be able to do a skill one day and then the next have it be gone. It looked like non compliance to us in the beginning, but after a while we would realize that the skill was just gone.

Ok, so how do you prove it to the outside world? In the land of “mom reports”, not much I say is taken seriously…

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