Monday, February 24, 2014

Decisions: When the head knows, but the heart is saying "la la la...shut up bitch, I can't hear you."

We find ourselves in the unenviable position of having to make a very difficult decision regarding Noah. The most difficult decision we have faced yet.  It's not that we haven't made difficult decisions about his care in the past, and I know we will likely face even more difficult decisions in the future, but this one just sucks. It means we have taken that next step forward on the path of mental illness.

Noah has been spiraling downward for several months. We've watched it happen, but kept hoping with every doctor appointment, medication change, and relatively good day scattered amongst the difficult, that maybe it would get better.

It isn't though. It isn't getting better. He is getting worse. The line is getting thinner, and more and more often I see him leaning perilously close to the edge of reality.

There are times that I am not sure if he's walking in the same world that the rest of us are. 

He needs to be admitted to a psychiatric hospital. He needs his medications changed and we can't do that safely at home. He needs a set of eyes on him 24/7 that aren't mine or Rich's. 

My head and gut know what needs to be done. My heart though is fighting me and fighting me hard.

I'm scared. I'm scared to leave my little boy somewhere that I can only visit twice a day for an hour at a time. 

I'm scared because he has never been away from home without us.

I'm scared that he will be scared.

I'm scared he won't be able to take GG's blanket. Or worse, that he will and it will get lost.

I'm scared that he will hate me for doing this.

I'm scared that something bad will happen to him there.

I'm scared the other kids will teach him things, or behaviors, that he doesn't need to know.

I'm scared if we don't do it he will keep getting worse.

I'm scared if we do that they won't be able to help him. 

I'm scared that I'm going to feel relief when he isn't here.

I'm scared that if we have a few days of normalcy and peace in our house, days where we aren't constantly dealing with behaviors and meltdowns, that it is going to be even harder to go back to it when he comes home. And yes, I do want to throw up after writing that because I know it is awful. I also know it is true. I don't doubt my love for him, but I am so tired. What does that say about me? 

I expected the psychiatrist to tell me today that he needs to go. Instead he left it very much up to us. He didn't say it was the wrong thing, but he also didn't say "yes, you need to do this now." He did remind me though, that I'm the grown up and that I need to look at the bigger picture, because Noah can't.

The psychologist thinks we should, and he's spent more time with Noah than the psychiatrist.

His teacher is concerned, and said today that Noah isn't the same kid he was last fall.

I know what needs to be done.

I know.

I hate it, but I know.

I'm just not sure I'm ready yet to tell my heart to shut up and let my head lead the way.

I'm scared for what is and what is yet to come.

Thursday, February 06, 2014

Sometimes I bend, but I will not break.

There are times when the weight of the responsibility of raising Noah to be a decent, independent adult that is able to function in society threatens to break me.
I don't think I'm supposed to admit that though. 
As the parent of a child with special needs I should be worthy of hearing "I don't know how you do it," "I couldn't do what you do," and "he is so lucky to have you."
When I complain, and admit to not being perfect, to struggling, to god forbid needing help, it makes people uncomfortable. I rather think they prefer when I write about vibrators over sharing with the world that my son has a mental illness and it really, really sucks.
You know what? I get it!
The truth is, I lose track of that line between sharing and complaining quite often. Too often.
Yesterday, I found out that Noah will not be able to attend the special needs summer day camp he has attended for the last three years. They changed the age range of their program and somehow we missed the letter telling us that. It wasn't until earlier this week when I started to think that I have usually sent in his camp application by now that I thought to question why we had yet to hear from them.

Just as I finished a conference call with my team at work, I received the email telling me he wouldn't be able to attend this summer. 

It is without exaggeration that I say I came close to breaking. I bent, and I bent far. I thought I was going to snap. Like the snow and ice laden trees behind our house did in the storm the night before.

What are we going to do? Where will he go this summer? I will have to quit my job. I can't do that. How will we survive? What will I dooooo???

I cried. I sobbed. I took to my bed and wallowed in my tears.

Oh, the drama!

We are in the midst of snow and ice-storm school closings. Yesterday, we spent part of the day without power. My children forgot how to play with REAL toys, because Oh the injustice, there was no TV or cable or internet or Xbox. And LIFE IS SO HARD YOU GUYS! This house sucks! You obviously don't love us because we are SOOOOO bored! It's not fairrrrr! You are the worst parents ever!

I looked at them through my puffy, tear filled eyes, and said YUP. And then I cried some more.

Because I too was feeling that LIFE IS SO HARD. And IT'S NOT FAIR!

I was tired. Tired of the fight. Fighting to have a family, fighting to bring Noah home, fighting my body to get pregnant with Kiel, fighting to find Noah the help he needs, fighting the school, the system, the insurance companies, fighting my own needs and my own health. Why can't something be easy for a change!

I yelled at my children to pick up their toys, and put the coats away, and stop leaving your shoes and boots all over. 

I can't stand it! I screamed, Why can't ANYONE MAKE MY LIFE A LITTLE EASIER!

Again with the drama!

I texted Noah's behavior specialist and said "I can't do this anymore."

It didn't matter that this was far from the worst thing we have had to deal with - I bent as far as I have ever bent before. The only reason you could not hear the cracking was because my sobs were too loud.

Today I received a message from one of Kiel's teachers. Thank you universe for my boys amazing teachers - especially this one!
My dearest Kristine. I am having snack with your son and he happens to share how sad you are that you got fired from your job. He doesn't know why "that man would do that". Now she is home taking care of Noah. He was so sweet and concerned when he was telling me the story. Not sure if it is true but if it is I'm sorry you lost your job. :) I'm enjoying teaching your sweet boy. Have a good day.

This child! I am so blessed to have this boy as my son!

Kiel saw me cry at the same time he knew I was working. Both boys wanted to know what was wrong and all I told them was I received bad news. Kiel put two and two together, and since he doesn't know how to add yet, he came up with "the man fired mommy" as the answer.

It reminds me that they see everything. They see me bend, and they see me stand back up.
I wish they didn't see my tears as often as they do. Or hear my screams.
I know that I will continue to stand back up because I have no choice.

Today I know we will figure this out. We always do. We have no choice.

I just hope that when my boys see me bend like I did yesterday, then stand back up as I did today, that they realize they too can stand tall and strong after a storm.

Even better if they can do it with less drama than their mama.