Still No Answers

We still don't know why Gracie started refusing to go to sleep, and why she stayed awake for almost 48 hours.

This past week and a half of no sleep has been very hard on me. I didn't expect this to happen. I wasn't prepared for it at all and it totally took me by surprise. Not only that, but the severity of it was shocking. It took me to different places of worry, places of the unknown, where I haven't been in years.  The depths of exhaustion made everything much more difficult to deal with.

We have talked with the geneticist and our family doctor.  Right now, they are thinking that there is no physical reason as to why she won't sleep.

One thing that keeps striking us is the way that she seem very scared.  She does not want to be left alone in her room, and she panics if I attempt to leave her like I used to.  This leads us to think that she had some sort of nightmare, or night terrors. 

We are still giving her the night time sleep med and have temporally stopped another med.  We are going to try this med and hope that it will snap her back into her sleep rhythm.  We go back next week to see the doctor and will plan from there.

Things have been better.  She is still scared, but I want to keep her sleeping in her room.  We are still doing the same nighttime routine as usual.  I am putting her in bed and I sit with her and read to her for awhile.  She falls asleep and then wakes herself up to make sure I am still with her.

After about an hour, I tell her it's time to go to bed, kiss her, and then leave her.  She does get scared, but she is comforting herself, which is a good thing. If she gets too upset,  I go back in, put her in bed, and kiss her and tell her it's time for night night.  Then I leave her again. 

This is the third night I did this, and she fell asleep right after I left her.  She didn't want me to leave her, but she stayed in bed and didn't cry.  The first two nights I did this, she did fuss a little, but it only took an hour for her to give in and go to sleep, and I only had to go in a few times each night.

During all of this, I have heard many different comments from family members.  Some were thinking that I was making a mountain out of a molehill, and that I had nothing to worry about.  Maybe they wouldn't worry if their child all of a sudden was petrified to go to sleep, and stayed awake for 48 hours while on sleep meds, but I do.  All of their kids could tell them what is wrong, and they have no idea what it is like to have a child go through something like this and not be able to tell them what is wrong.

I am so done with putting up with bad attitudes. All I want is to be understood, and given the benefit of the doubt. If I say that this is rough, if I say that things are not okay with Gracie, then I want to be respected for that. I don't want to be talked down to, and made to feel bad for worrying about my child. I don't want to feel that people are judging me, when I am trying to do the best that I can for my child.

I am the one who is doing this hard work. I am the one who is trying to figure out this mystery child. I am the one who is watching her try to sleep, watching her legs twitch in ways I have never seen, and watching her be miserable. I am the one who is worrying about her, talking to the doctors, and taking care of her all day and night.

I am the one that she is counting on to help her, to take care of her. If you can't at least be respectful of that, then stay away and say nothing to me. By bringing me down, you are taking away from my child when she needs help the most, and that I won't allow

These comments, and the feelings they brought, were just added stress that we didn't need.  I didn't seek out these people, they called me.  They should have just stayed away.  I am done with giving them any of my energy.

Hopefully we are on the right track, and that things will smooth out.  I feel we have a good plan, and once we talk to the doctor again, I think we will be better able to handle this situation.  Please just continue to pray for Gracie, and for her to be able to sleep.