I appreciate everyone’s comments and support very much. We are all feeling exhausted and yet each day brings new challenges.

Brendan’s day was marginally better than yesterday. He did not cry as hard when startled, he had some small happy times. But mostly, it was the same struggle. He just can not sleep. He is awake now with Bill and just can’t get comfortable. He lies down, then sits up, cries, lies down, rubs his eyes, sits up. He just can’t get rest. He wants to sleep but he won’t sit still for a minute.

He took a couple of tiny naps today but mostly we just tried to allow him to rest. He was ok on a pillow watching some Yo Gabba Gabba for a while.

He needs sleep!

I sometimes could catch him smiling, but it wouldn’t last. Just the wrong look or sound and he was crying again.

Trevor took a very short nap today too so he was a little cranky. But he had a mostly good day. He loves the “Trevor, where is your belly button?” game.

And because we all need the smile for today…

update at 10:55PM… finally asleep

At the end of each day when I sit to write the blog, I usually find the most positive things that happened and publish the cutest pictures. I am really struggling today to put aside all the negative emotions and write something. It isn’t like the day was entirely bad. I did ten loads of laundry. Bill fixed the broken drawers on Trevor’s dresser, I got a cool new toy in the mail (more on that later). Trevor is getting better at walking. I worked on some other projects I have been wanting to do while Trevor slept and Brendan was in his nurse’s care. There are always good things.

There are always cute pictures.

Trevor is learning about noses and ears. I laugh when I ask him to find his belly button and he lifts up his shirt and works real hard to be able to see it over his round little tummy.

But then there is Brendan’s withdrawal. He is having such a hard time. I have a mixture of anger, frustration, fear, guilt, sadness, and worry about this process. The more I read and learn about benzodiazepene withdrawal, the worse I feel. He could have symptoms for weeks, months, or even years. There is no way to know how this drug may affect the rest of his life, his development, his future emotional state.
Chemical dependency just plain SUCKS. I can’t beat myself up about the ‘should haves’ and ‘could haves’ but I will always wonder if I couldn’t have done better for Brendan and protected him from this suffering now.

He is restless, jumpy, sad, scared, sweaty. He struggles to get sleep, he is so tired. He spent the day just in a daze. We tried to give him some Benadryl to help him sleep and I think that just made it worse.
He just was wide-eyed, exhausted, and extra sensitive.

Even some of his favorite things would make him cry.

By late this afternoon, he had a short time where he relaxed a bit and played and smiled. But even his smiles had a little bit of “crazy eyes”.

It does not feel good to doubt yourself and the decisions you are making. I question the timing of all this and wonder if we shouldn’t have tapered more slowly or waited longer so that this did not coincide with other highly emotional events.
Like we have always done, we move ahead one day at a time and try to make the best of every day.

The services and burial for Grandpa Jack took place today. We owe a huge thank you to Christine and Johnathon for giving so much of their time to be at our house today with me and the boys so that Bill could spend the day with his family and friends.
We also appreciate the huge turnout today at the funeral and all the people that put forth effort to prepare a wonderful memorial.

At home today, Brendan was experiencing his worst withdrawal symptoms since we began weaning Ativan. He has not had a dose in more than 48 hours now and it is really taking its toll on him. He was so jumpy, sensitive, full of tears, nervous, restless… it goes on. He was so tired and just couldn’t sleep. I am hoping that these symptoms are gone quickly.

Trevor had a great day. After his breakfast and bath, he will sit quietly and watch about 15min of “The Lorax” while he drinks his milk. I never thought I would be the mom that parks a child in front of the television, but it is the only way I can get things done sometimes, especially when Brendan is so needy. Trevor’s movie watching chair is constantly evolving.

You can just tell that Brendan didn’t get a good night of sleep.

While I had my hands full with Brendan, Trevor managed to get in to a predicament. It looked so funny that instead of helping him out, I had to grab the camera. My mind immediately went to the ‘Luke stuffed in to the belly of the tauntaun for warmth’ scene from “The Empire Strikes Back”!

He already pushes the horse all around the living room like he does with his trucks. Now I guess he figures it can serve as a snack table too!

“What? Isn’t this called riding sidesaddle?”

After Brendan’s bath, he took a short nap and then he woke up happy. He was pretty silly for about an hour and then he went back to being cranky and restless. No matter how bad his days are, he always is good for at least one smile.

Trevor had a blast playing with Johnathon and Christine and he even let her rock him to sleep tonight for bed. We hope that Brendan is able to get a good night of rest but he isn’t off to a great start. He slept three hours tonight as long as I held him and didn’t move.
He is up and being silly now with Bill!