Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Wednesday, September 9, 2009
The First Day of School Started at 4:30 am (I think)
So I look up as I roll over about 5:30 this morning and ask Marshall why he's getting back in bed and he tells me Alex has been up for about an hour already and is not going back to sleep. And he's loud enough that Miranda wakes up at 6. These children were not supposed to wake up until their father got into the shower at 6:45. So I'm starting the day grumpy from a lack of sleep. And I have to take Miranda to Alex's school this morning to drop off his Ritalin with the nurse so he doesn't make his teacher nuts by bouncing around the classroom all afternoon but since Miranda wants to go to school now herself, I'm going to carry her out screaming. Or push her out in the stroller, that is. Because she won't be able to walk from the parking lot to the school since Alex was jumping around last night about 5:30 and landed perfectly wrong on her right foot, spraining the joint that connects her big toe to her right foot. So she's limping. It's not really swollen or bruised this morning so it is getting better, but she has to limp to get around, which is the most pathetic thing in the world to watch this girl who her father calls alternately "Thumper" and "Princess Thunderfoot" LIMP. So even though it is the first day of school and I should be jumping for joy, I'm trying not to cry.
Monday, September 7, 2009
The little girl who won't sleep in a bed (or, only 2 more days)

So, our good little sleeper--as Miranda has been since she was tiny--has decided in the last week, that she won't sleep in a bed and will only fall asleep wrapped up in her blankets on the hallway floor outside of her room at least an hour after she was supposed to be asleep. So, I decided this must mean she's really done with the toddler bed and we should just go ahead and buy her a mattress to go with the big girl bed that's been in the house in pieces for 2 weeks as Marshall needed to paint it (which he is out in the garage doing right now). So, yesterday while we were at Costco with the kids to stock up on enough bread, cheese and milk to get us through the week, we looked at the mattresses and decided to buy one that afternoon. So, after purchasing said groceries, we went for our regular French Fries run, and then Marshall left me with the kids at home so he could go right back to Costco and buy the mattress.
[We missed our French Fry stop after church because we didn't go to church because Saturday night-Sunday morning Alex was awake from 11 pm until 4:30 am. He did this a week ago and we haven't a clue what's causing the wakefulness. He's not sick, he's not bad, he's just wide awake, and so one of us adults has to be supervising him because, well, you can't leave Alex unsupervised. So it was 10:30 am until Alex woke up and since Marshall and I had taken the night assignments in shifts, Marshall didn't get up again until 11 am. So no church.]
So then Marshall and I move the baby dresser out to the street (the one with the attached changing table that she's been too big to use for at least 6 months), we move the toddler bed that will go back to Marshall's sister for cousin Lilly, and we bring in the new mattress. We let the kids bounce on it for a few minutes (see above) and then I put all the bedding on it.
And when bed time comes and she's crying with exhaustion, what does she do?

Not only did Marshall move her into the bed after she fell asleep, I had to move her back when I went to bed later. Which means she had re-awoken and gone back to the floor. She makes me so completely crazy.
So, only 2 more days until Alex goes back to school. The bus will come promptly at 8:23 am Wednesday morning with Miss Linda the driver (we hope) and he will run out of the house and off to Kindergarten. Miranda's preschool orientation at Hope is Friday morning and then she starts the following Monday morning. Her behaviors have been so bad in the last few weeks, though, that I am anxious about leaving her at Hope. What if she beats up her classmates like she beats us up when she's unhappy or thwarted? Unpleasant to think about.
Tuesday, September 1, 2009
New pictures are up

Since my mother's been here, she's been taking a lot of pictures. This is our favorite of Alex playing in the mud. The rest of them are here.
Miranda was playing dress-up this morning with new clothes from the hand-me-down bag. Too cute!
Friday, August 28, 2009
And the good news is...
...that Lauren, Miranda's case worker from the Mt. Laurel School District, called me yesterday to say Miranda has a place in Ms. Barbara Borden's class at Springville Elem. That means Alex and Miranda will be in the same building and should be able to take the same bus in the morning, starting in November, after Miranda turns 3. I know Ms. Barbara from field trips as her class usually joins Alex's whenever they go out and think the world of her. This is really great news!
Our IEP meeting was supposed to be next Monday morning but was moved to Sept. 14 to give Lauren a little more time to have everything spelled out in black and white. But now that I know where Miranda will be, I feel so much better.
Our IEP meeting was supposed to be next Monday morning but was moved to Sept. 14 to give Lauren a little more time to have everything spelled out in black and white. But now that I know where Miranda will be, I feel so much better.
Wednesday, August 26, 2009
Surviving Here (God Bless Grandma)
Last week was such fun that my mother agreed to come and help me get through the rest of August and she arrived Monday afternoon. Of course, both kids screamed for the 25 minutes before we left for the airport (late!) but were happy to see her when we finally got to the airport 35 minutes later. And we have decided traveling to San Diego for Thanksgiving is just not a good idea (the thought of Miranda on an airplane for untold hours still gives me the horrors!) so we have invited everybody to come here. Of course, if everyone comes, we'll be full up and sending people out to sleep at the houses of other friends and family, but it will still be fun. Boyle's love a full house and my husband is an indulgent man.
So now I need to make my wish list of things to do while she's here. We may try to clean out the garage on Saturday. Fun, fun, fun!
So now I need to make my wish list of things to do while she's here. We may try to clean out the garage on Saturday. Fun, fun, fun!
Thursday, August 13, 2009
And now for something completely different (revisted)
In March, I wrote up the movies we were planning to see in the spring and summer. I thought now would be a good time to revisit the list with short reviews and add a few:
March 6
Watchmen
I found this movie fascinating even though I haven't read the graphic novel; afterwards, I realized it was the first "R" rated movie I've actually seen in the theatre.
May 1
Wolverine
Passed on it because of poor reviews.
May 8
Star Trek
Saw it twice in the first week and still want to see it again!
May 22
Terminator: Salvation
Passed on it because of poor reviews.
May 29
Up
LOVED IT!
June 24
Transformers: Revenge of the Fallen
Did see it. Didn't love it, didn't hate it. Had a few moments I liked. Of course, Roger Ebert's rant against it has been pretty amusing to follow.
July 17
Harry Potter & the Half Blood Prince
Really liked it, although for the first time, I didn't reread the book before the movie. The actors were really wonderful but my biggest disappointment was no good kiss between Harry and Ginny.
August 9
G.I. Joe: Rise of Cobra
Still looking for a sitter so we can go see it.
Dec 18
Avatar
This is all that's available.
Additions:
Moon
We saw it the Fourth of July and loved it! Second "R" rated movie for me in theatres.
Hurt Locker
Opened mid-July. Dying to see it. I'm a new fan of Jeremy Renner.
District 9
Opens tomorrow. Marshall really wants to see it and I'm interested.
And our favorite sitter leaves for Disney early Saturday morning. Dang.
March 6
Watchmen
I found this movie fascinating even though I haven't read the graphic novel; afterwards, I realized it was the first "R" rated movie I've actually seen in the theatre.
May 1
Wolverine
Passed on it because of poor reviews.
May 8
Star Trek
Saw it twice in the first week and still want to see it again!
May 22
Terminator: Salvation
Passed on it because of poor reviews.
May 29
Up
LOVED IT!
June 24
Transformers: Revenge of the Fallen
Did see it. Didn't love it, didn't hate it. Had a few moments I liked. Of course, Roger Ebert's rant against it has been pretty amusing to follow.
July 17
Harry Potter & the Half Blood Prince
Really liked it, although for the first time, I didn't reread the book before the movie. The actors were really wonderful but my biggest disappointment was no good kiss between Harry and Ginny.
August 9
G.I. Joe: Rise of Cobra
Still looking for a sitter so we can go see it.
Dec 18
Avatar
This is all that's available.
Additions:
Moon
We saw it the Fourth of July and loved it! Second "R" rated movie for me in theatres.
Hurt Locker
Opened mid-July. Dying to see it. I'm a new fan of Jeremy Renner.
District 9
Opens tomorrow. Marshall really wants to see it and I'm interested.
And our favorite sitter leaves for Disney early Saturday morning. Dang.
Wednesday, August 12, 2009
The To Do List just keeps growing...
So, in the last week, FINALLY, Marshall and I wrote our fundraising letter for the GoodLooking Foundation Strides Walk on October 4, 2009 (Alex's 6th birthday, in fact). I had decided months ago that I wanted to walk to help raise funds for GLF since they have been SO good to us! So, if you haven't received the email, click here to see our page. Of course, I was supposed to have set the page up in May, but we got busy and tired and...it didn't get done. Same old story. I'm sure it's never happened to you. :)
I know I've been hardly posting for months, but Alex (accidently) broke my laptop in June and Miranda broke Marshall's (not so accidently) in July, so we've been surviving on Uncle Brandon's old one helpfully donated by Grandma and Grandpa and updated by Marshall, but it means we have to share and so the times when I used to be posting, Alex is using it. Or, in the evenings, I'm out walking to prep for the 5K walk on October 4th, or I'm just too darn tired.
If you haven't seen new pictures of the kids, the candid ones are here and the formal ones are here. They are still two of the cutest kids on the planet.
I know I've been hardly posting for months, but Alex (accidently) broke my laptop in June and Miranda broke Marshall's (not so accidently) in July, so we've been surviving on Uncle Brandon's old one helpfully donated by Grandma and Grandpa and updated by Marshall, but it means we have to share and so the times when I used to be posting, Alex is using it. Or, in the evenings, I'm out walking to prep for the 5K walk on October 4th, or I'm just too darn tired.
If you haven't seen new pictures of the kids, the candid ones are here and the formal ones are here. They are still two of the cutest kids on the planet.
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