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nursetara wrote:
another beautiful touching post christy... I wish you had time to write everyday, (I always check for new ones when I'm at work in the middle of the night.) I completely understand the need to want both, I have it too, pulled in 2 directions and you don't know which way to go sometimes.
1/20/2008 8:55 AM CST

Special Needs Mama wrote:
I don't know Elias personally, but from everything you've written and from what I've observed, I sincerely doubt the ONH diagnosis. It simply doesn't jibe with what I've seen you write about. Due to his CP, there could easily be issues related to his vision that don't fall into a clear category.

As for the rest, we all understand. Of course we do...
1/20/2008 3:39 PM CST

virginiawilliams wrote:
Wow. Do I ever understand...

1/20/2008 6:43 PM CST

Niksmother wrote:
Oh yes, you nailed it —perfectly! Nik has recently decided that I am his greatest playmate and there is only a handful of favored activities. Sending you mental/emotional respite vibes...
1/20/2008 7:48 PM CST

Following Elias wrote:
Glad to know that you all understand too.

And thanks for your input, SNM, we still have some digging to do to figure out if he really fits this diagnosis. His preschool teacher called him an enigma and I think its an accurate description since he's not "classic" in any sense, with any of his diagnosis.

And thank you Tara. I too wish I had time to write every day, thanks for letting me know you check in the middle of night. The athlete in me was dreading bed-rest but the writer longed for the quiet time to work. Now I'm back to the game of trying to balance all my interests and loves. As we all are...
1/20/2008 9:37 PM CST

GlynK wrote:
Oh, Christy, I totally understand! We don't have a lot of options for evening babysitters, and most of our non-work hours are spent with our miracle, but sometimes (more often lately as we get more independent, yet more dependent in some areas!) we want time to ourselves. This is why we're also reading in the middle of the night. No matter what time we get him in bed, he's not been falling asleep until after 10, usually between 11-12am. We can't sleep or wind down until he's in bed and asleep, so we've been going to bed far later than we should. So in the end, we're exhausted and irritable, and all he wants to do is play, and go places. And last week was my first week back at work after two weeks off (child care provider was on vacation) with him, just the two of us during the days. I love this boy dearly, but sometimes we're just tired, ya know?

I'm also glad you're still writing. =)
1/21/2008 3:22 AM CST

heather3boys wrote:
Thank you for writing. I understand all of it, the joys and most of all the frustrations! Our son was dubbed an enigma by his neurologist. Actually, by 2 different neurologists. Hang in there, in reading over the past year, Elias is growing by leaps and bounds! It's just hard to see through the pot pie and diapers. :)
1/21/2008 9:38 AM CST

Following Elias wrote:
Heather, thanks for your understanding and for reminding me to look through a larger lens:)

And Oh Glyn, thank you thank you for writing both here and for your wonderful email, for letting me know that you get it...you really do. I'll write you more soon!
1/22/2008 1:24 AM CST

skyyshan wrote:
Yeah, I understand...
1/24/2008 2:01 AM CST

kylah_222 wrote:
Lists and diagnoses and a whole lot of "I don't know." And the needs. And schedules. And the exhaustion.

A vacation in childhood would be nice every once in a while, I think.
1/26/2008 3:32 PM CST

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