A Long Night for Charlie Girl

So, lastnight Charlie and I had a fairly long night. I took Charlie into the bedroom with me to sleep on the big comfy bed. I put her down and went to walk the dog. When I got back, she was eating through her g-tube but still wide awake. I went to lay down next to her and she just seemed so uncomfortable. So, I wound up staying up with my Charlie Girl. She was throwing up a bit, which is something she does often, but she couldn't get comfortable. It was about 12 when I started trying to ease her discomfort. I relieved her gas through her g-tube, which is a tedious task but I will do anything for her if is means she will feel better. Bubble by bubble, they came out for air. With each lift of her legs we worked all the pesky bubbles out. By the time I was done with that, she seemed a bit better but her legs kept doing that bicylcing motion which could mean 1 of two things. One would be that she needs to poop or she could be having a seizure. Luckily, she has not had a seizure like that in quite a while. Don't get me wrong, she still seizes quite often, but they are mostly in her face, more so in her eyes. When she has a seizure I just feel so helpless. I never know what the next one will bring. Anyway, I helped her poop a little. The face she puts on when I help her (I won't go into too much detail here) is priceless. She looks very intense! She gets all blotchy too. Just like her mommy :) After that, I changed her outfit because she had vomited quite a bit. I put her in a two piece pajama set that my mom bought for her. It's pink (of course) and it's long! She looked beautiful.

After I put lotion on her body, changed her diaper, cleaned her mouth, flossed her teeth, cleaned her Mic-Key button (which is what the port that the tube locks into for her feeding and medication purposes), washed her hands and feet, and cleaned her ears, she was fairly calm. I sat her on my knee, facing me. I just kept looking at her saying "Can you see Mommy?". Over and over I said that. I held her close and kissed her over and over and over again. I would swear she was looking right at me but the look is very empty in ways. She would answer me sometimes with a sound, as if to say "I am here mommy"... I don't know if she even knows who I am. If she knows how much I love her. If she knows how much pain I feel knowing that I can't help her. If she knows what I would do and give up for her to live. Live her life...

Right now she depends on my husband and I for everything. She can do nothing for herself but cough up anything that might enter her lungs. Which is huge for her because that is something that we cannot do for her. I just hope that she's not in any pain. I hope that this is all just a big dream for her and that when the time comes, she will feel no pain. No agony.

She is my life... She holds my love and when she leaves... I am afraid that I will be dead inside. Alone. Drained. Afraid. Scared. Lifeless.

All we can do is wait...

Anyway, after all was said and done lastnight, or should I say this morning, she and I cuddled while we both fell asleep. Those are the nights that I treasure... And always will...

To be continued...