Dec. pictures and update Dec. 8 2009

So here are the photos i ended up using for my card. As i was not certain on any one and if i had taken any more photos the kids would have flushed the camera on me i put this group together in one card! They are all black and white and i think it makes a nice christmas collage!!
I know i said i would talk more about the happenings in our family.. i suppose i shall go backwards!! This past month Willem and i spent 2 days in the hospital for an
EEG. Willem falls asleep at unusual times and his school nurse was convinced he was having seizures. He isn't!!! At the hospital he fell asleep eating ice cream in the afternoon as well as at dinner as he does if he does not get a nap during the day. He went in and out of sleep with out anything unusual. I blame his school for falling asleep there as they only had a pre-k 2nd year in the afternoon which SO does not work for us!!! He is missing SO much school because when he falls asleep before school i cannot get him to wake up right away. His having to go to school in the after noon has added SO much stress to my life i cannot even begin to explain. Not only with him needing to sleep at some point in the day but also with Helena's nap trying to get her to wait until after Will is off to school at 12:30. (then waking her to get Ben at 2:30) YET i am stuck because he is learning so much! Learning his letters even writting some of the letters on his own. And he and I Really like his teacher she really gets him which is an awesome thing. I wonder when he will grow out of his need for a nap in truth i anxiously await that time. I blame it on his very low muscle tone. How much energy it takes from him to do the simplest of tasks and all the ones he still has not mastered! He is finally getting his own underware and pants on and off. BUT cannot get his own sock on or navigate getting his own shirt on. My phrase is that he has a hard time with his fine gross motor skills, the big things that take detail like finding the arm hole in a shirt. Pressing certain buttons on toys he still has difficulty. I really wish we knew other moebius children to know if they are going through similar issues. I did meet so many different people at the conference a year and a half ago but i am so not social that i never really made a contact with any of the other moms. That is a goal of mine for this coming July!!!!
So we just keep going and love each other a lot!!! I am tired but will try to be better about logging on to this space were it feels good to think out loud.

s

Dec. 7 2009

Wow, i haven't written anything all year!! And now today as i try to capture my three lovely children in a photo for a christmas card which puts added pressure as it is for a card. I take pictures of them all the time ~ I am telling Benjamin to smile, trying to get Helena to sit and look up and have Willem focus at the camera and my sweet Willem says, " I wish i could see my smile in a mirror."
He feels it inside, he tries to show it on his face and when he does his eyes go out of focus, his mouth doesn't change... such a simple thing that so many people will never once in there lives think about, not knowing that there is a little boy out there that just wants to show it on his face! Never knowing there are thousands of people with Moebius Syndrome. we stopped that photo shoot the moment to get the photo had passed. i love my kids so much and i get so darn stressed over their christmas picture... there is so much more to the season than a card.
But i will try again tomorrow and when i get the right photo i will post it here.

NOW that i got that out i should write more about all the CRAZINESS that has been going on in our lives this past year... i will soon?!?!?