Sunday, July 13, 2008

So true...

(and that's what I've been trying to do since I last posted on Friday... learning to surf the *waves* instead of getting wiped out... and lemme tell you, there's a whole lot of falling off the darn board involved...)


Added at 11:25 am:
Ay, another wipe-out by a *wave* I didn't see coming...
And there seems to be a lot of what's expressed going around on the various blogs.

Summer time with kids on the spectrum is just so incredibly hard. I think most of us do a really good job at staying in the moment, only comparing how our kids are NOW to where they WERE. But then that school break comes along.. and with that the family and friends get-to-gethers, the increased unstructured social time, seeing packs of kids running around all day in your neighborhood...

All summer long, we get bombarded with situations where you can't help but notice that, no matter how far your child has come, they still have far to go compared to their neurotypical peers... And quite a few of us have to face up to the fact that our child may never catch up, that there may always be *stuff* that needs to be dealt with...

I remember talking on the phone with a dear friend about a year ago, and he was asking how our summer was going (and last summer was a tough one, having just started Step 2 of Dr. Amy's protocol with Salamander). And I fell silent as I could not find the words to express how torn up I was over the fact that I HAD to push through the truly horrendous detox Salamander was experiencing, that -I- had to *do this* to my child...

He *got* how much I was struggling to find the right words... And all he said was: "It must be SO hard." It took all I had to not start bawling in response...

Yes, it IS GD f#cking hard....

(Salamander woke up *totally mito* this morning, and just crashed. SHIT, SHIT, SHIT. No 10 year old boy should have to deal with this kind of crap when it is a gorgeous summer day and all the other kids are running around having a ball...)

3 Comments:

At 11:10 PM, July 13, 2008 , Anonymous Anonymous said...

I know its hard so very harddddddd, but you just have to keep pushing forward. I stop looking at the other kids Matthew's age and what they can do and I just keep pushing Matthew to be the best he can be. You have to believe in a better tomorrow with the step you take today. Your friend
Daniel
www.recoveringMatthew.blogspot.com

 
At 12:14 AM, July 14, 2008 , Anonymous Jeanne said...

My God woman, do you ever get a break? Seems just when you poke your head out from behind the bunker all hell breaks loose again. I am terribly sorry, but I know you are working your ass off to help Salamander.

Oh, and question in the back... What does "totally mito" mean exactly? We recently got word that certain markers indicate Charlie is "a mito kid" - this happened when all hell broke loose around here a few weeks ago. I have yet to truly investigate what this means, as I've just turned our world right side up again. Back to the books/Google.

Feel free to email... I'm pulling for you guys, and so, so sorry S is having to go through this crap.

 
At 4:06 AM, July 14, 2008 , Blogger Petra said...

My thanks to you both (yup, up early). Salamander IS doing better, we'll take it nice and slow today and then we'll take it from there.

Jeanne, breaks are for 'sissies'.. LOL...I'll get back to you on the *totally mito* comment. It may take me a day (as the reason I'm up so friggin' early is to get work related stuff done that's due by 5 pm today). I'm pretty sure that in Charlie's case his lactate or pyruvate and/or the ratio of these two were 'off' (and combined with the elevated ammonia). Not surprising from your description of how he was. Give a holler if you haven't heard from me by sometime mid day tomorrow.

 

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