Good days and bad...
Today was bad.
Fucking awful...
It started around 4am. That was when Cuyler woke up and proceeded to climb into bed with Cam and start singing. Not quietly.
It was around that time Eva woke up to eat. Because she is still not sleeping through the night. And her bedtime is around midnight.
So Cuy is up at 4am. For the second or third night in a row. It's all a blur.
Sean takes him back to bed and he eventually falls back alseep.
7:30 Sean bring Eva into me. I nurse her. Give her back to Sean and hop in the shower.
Sean changes her and gets breakfast. Eva is CRANKY and doesn't want down.
Cuyler is still sleeping.
Sean goes to work.
I start lunches.
Cuyler still sleeping.
Cam gets dressed. I dress Eva. I finish lunches.
Cuyler still sleeping. It's 8:20. We leave at 8:55.
I finally wake him up. Get him down and he refuses the waffle Sean made him.
"I want new waffle! Mommy make new waffle!"
Fine I'll make you a new waffle.
"SAUSAGES! I WANT SAUSAGES AND WAFFLE!!"
...fine I'll make some fucking sausages.
He eats the sausages. But tosses the new waffle into the trash with the other one.
All the while, Cam watches Eva for me so I can dry my hair a little bit. He's such a good boy...and we crap on him all the time...
Anyways...Cuyler is refusing to get dressed. Freaking out. Screaming.
I call Sean mom. She comes to take Cam to school and I keep Cuy home.
I put ALL of his trains away. He'd stim on them all day if I let him. If he's not going to school, he's going to engage with me.
Well...he would if he wasn't so spaced out. Miserable. Stimmy. Side gazing. The whole bit.
He's been self limiting in his diet (french fries and sausages) thus not getting any of his supplements.
Did I mention that Eva is miserable as well. Teething maybe?
Tired maybe? With a 12am bedtime everynight I'd be too...
So we plug through the day. I'm not quite sure how because all I wanted to do all day was SCREEEEEEEEEEEEEM and rip my hair out.
At 3:30 I had to literally drag him to pick Cam up from school. So much so that another mom had to push Eva's stroller across the road for me so I could carry him. He hasn't put on a show like that in well over a year.
Dinner was fun. He refused to eat what I made and screamed to play Thomas on the computer.
And tonight was the night that Sean came home late.
So here it is 10:07pm. Eva is crying in her crib because neither Sean nor I want to hang out with her until midnight. I don't know what his problem is - I have her all day (did I mention she rarely naps?).
Cuyler is awake in his room stimming on his trains I'm sure.
And I just got an email from Allergygrocer.com saying that my shipping bill has been recalculated and I have to choose the $38 or the $45 dollar method. I cancelled it and will never order from them again. I put the order in NINE days ago and they sent me the new shipping bill today. I needed the cake mix for Saturday for Cuylers 5th birthday party.
Which is totally depressing me. He'll be 5. And nowhere near where I thought he'd be.
How did we get him diagnosed so young and he's still where he is? Why is he not better? Talking better? Understanding better? Coping better?
What haven't I done? What have I missed?
Today I told Sean "Fuck it. I'm done. I've done nothing but work my ass off to get this kid better and I'm still having days where I want to run as far away from him as I can."
Why am I working so hard? For what? Why am I trying to change who he is?
It's not like my life or his life is getting easier.
And Eva. The only support group I have is one where all the families are in the US and the dr's there actually TREAT the hemangioma's. Remove them. Laser them.
And here...we just "Wait and see" what it does. So I go online and see babes who are getting treatment and having surgery and their hemangioma's are gone by the time they're a year old. Eva's might be gone when she's 4. And that's not taking into account all the plastic surgery she'll have to have from the ulcers and the scarring they left.
Fuck I hate my life right now.
I just wish my kids were fine. Normal.
Not screaming they're lungs out in their crib right now...
posted by Irish @ 8:48 PM
7 Comments:
Hey Irish,
This is Molly from the Nov. 2002 board and I read your blog from time to time. I just wanted to let you know that I'm so sorry that you've had such a terrible day.
I'm sending you pvs for a much better tomorrow!!
--Molly
Myautumnbabies
Wow- it's been quite awhile since you've posted about a crappy day. I guess they never disappear. I hope today is better- wish we could help!
Henry's had a couple big scenes out in public lately and I thought we were done with those. They still backtrack and have rough days, unfortunately.
Hang in there and it doesn't hurt a baby to cry in her crib- especially if it saves her mom's sanity.
I would hug you if I could!
Yesterday was probably the worst day we've had with Caden in a very very very long time. He was hyper X 1000. I've never seen him like that. Laughing and running around and acting completely spastic. I keep wondering if it's the time change. And I know how you feel - C was diagnosed at just 17 months old. He's been getting therapy ever since then and while he IS making progress, I guess he's not quite as far as I'd hoped. I say...as long as they ARE making progress, that's a good thing!
The kids are out of school for two days - teacher workday - and I, too, feel like I'm going to rip my hair out. Hang in there.
OH! I am so sorry you are having a difficult time. I can't even begin to imagine what you are going through. I just want to say that I do read your blogs and I still think your a great mom and it sounds like you have gotten Cuyler through alot!!!! (((HUGS))))
Carrie=Nov. 2002 boards
from 5 on you will see big changes...there is something about that age. he is growing. you will see.
Hello,
My son is 8 and doing OK, he has his moments. He has autism too. My daughter is 6 and happily I can say she "had" a haemangioma (right in the middle of her face). It is as good as gone now. I remember all the worry about haemangioma, the talk of a support group for the parents of children with facial disfiguration, the worry about using medication, whether to seek a surgical opinion (didn't), whether to do laser (haven't), the occasional rude comment from strangers. All this just before the autism business came up. Very stressful.
I know hearing someone else had or has this or that does not exactly help with the here and now, but I know I would have liked to "talk" to someone who had a tiny idea about what was happening in my life at the time because it was an isolating experience.
Very best wishes, try to take care of yourself (I know everyone says that), Ann.
Haven't read your blog in a while so I thought I'd catch up. I'm sorry to see that you guys are having such a hard time. We've had those days with Shay, although I know you guys have gone thru so much more with Cuyler.
I myself also wondered why we have such bad behavior problems 2 years after Shay was dx'd with Aspergers, especially when we have made so many changed in his discipline, diet, our interaction with him, and so many other areas. Some days are great, and then others are just as bad as the day you had this day, and I am just totally done with him, and say the same things to my dh.
I am sorry about Eva's hemangioma still giving her trouble. I wish you guys could come to the states and have it taken care of, but that would just be too easy, I know there is more to it than just hopping the border. I know this has thrown you all for a loop - the second time around for your family - and that must be hard. Take it easy, and make sure you get a break, you probably aren't getting away enough.
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