Monday, February 22, 2010

Diary of a Mom of a Child with a Sleep Disorder

Dear diary,

I am tired. I am so tired. I have forgotten what it is like to sleep from the moment that I lay down at night until the moment that I wake up in the morning. I have no clue what it means anymore to get a good-night’s sleep. I am tired. So tired.

On another note, my heart is broken. While I am tired and sleepy and sometimes grumpy, I am the lucky one in this situation. My sweet, tow-headed toddler has NO IDEA what it is like to go to sleep at night and not have nightmares. This rips my heart straight out of my chest and throws it on the floor and it is stomped on. I am so sad that each and every night she cries out in terror and there is not a thing that I can do. I wish I could make it all go away, selfishly so that I can get back to sleeping, but most importantly so that she no longer has to fear her sleep.

So diary, I am tired. We are tired. She doesn’t deserve this.


For those of you newly on board here at the Norris family journey, Louisa has a sleep disorder. It is termed “disorder of arousal” and is defined as:
Arousal disorders are parasomnia disorders presumed to be due to an abnormal arousal mechanism. Forced arousal from sleep can induce episodes. The "classical" arousal disorders are sleepwalking (somnambulism), sleep terrors and confusional arousals. These arousals occur when a person is in a mixed state of being both asleep and awake, generally coming from the deepest stage of non-dreaming sleep. This means a person is awake enough to act out complex behaviors but still asleep and not aware or able to remember these actions.
Thanks Wikipedia for the lesson today. I just wish it wasn’t a lesson that we knew by heart here. I have blogged about it numerous times before, interested? Check them out from the get-go. Okay, so after I put them all together, I realized there are a lot, so if you want to venture out and learn all about living with a child that has a sleep disorder....grab a cup of coffee or some wine (it is always 5 o'clock somewhere) since we all know how wordy I tend to be).

Sorry to be a downer for some, but last night was just such a bad night that I just had to get it out there. This blog is therapy for me in some warped way and I just needed to vent. I really don’t like to talk about it much anymore because people just don’t understand. And rightfully so, no one should have to understand this. It is dreadful, especially when it happens to your child. I get so fed-up each and every time that someone says, “Oh that isn’t better yet?” or “Isn’t there something that you can do?” If there was something that could be done, I think we would’ve taken care of that 2 years ago. But there isn’t, instead I have to lie in bed at night and listen to my child scream bloody murder in the next room knowing that if I go in there to console her it will be 10 times worse since she isn’t really awake. The doctors tell you that the worst thing you can do is try to wake them.

Her sleep exists almost in phases. She will go for about 1-2 weeks (recently she had a stretch of like 3 weeks) in which it is bad, bad. This means that I am going into her room on average 3 times a night to make sure she isn’t scratching herself, falling out of bed, in danger, etc and an average of 6-7 times a night that I lie in bed and listen to her scream out. Then she has a week or so of good sleep. From the looks of the last few nights, we’ve got a mighty-fine stretch ahead of us now. But do you know that you would NEVER imagine that my child had this if you saw her on a daily basis? I wish that I could be as resilient as she. One would never know that she didn’t sleep well. It sure doesn’t stop her. She is amazing, and I love her.

Until next time…as I tell her nightly, no more bad dreams, only princess dreams.


kosekcasa said...

Bless your heart Amy...and bless Lou's heart. The few times that Kate has had nightmares have scared me 1/2 to death. The hollering out and then her being able to tell me about these dreams. I just wish that I could jump in her brain and take those images out of there. I can't imagine going through this daily.

That is a precious pic of Lou that belly hanging out!

handbags*n*pigtails said...

This is terrible and very sad...for all of you.The worst thing in the World is that helpless feeling, not being able to help your child.
Is this something that she may outgrow? Im only asking b/c I dont know about it first-hand.
Many prayers,

Nora said...

This post brought tears to my eyes...for you and for Lou! Prayers that someday, hopefully sooner rather than later, they can figure out something to do for her! I can only imagine how rough it is for you and Byron!! If I were closer to you guys she could have a sleepover here with us just so you could get a good nights sleep! Such a precious angel you have! Prayers for you all girl, you have become such a great friend and support to me over the past year, I just wish I was closer so I could give you some help. I'm so glad to have found you and been able to reconnect again!


The Fab Five said...

I too, am so so sorry you all are going through this.