I don't think I will be able to sleep again. I'm past the point of exhaustion now; whoever said you get rest in a hospital lied.
I've been here with my daughter ever since last week, when she first took sick with that damned pneumonia; it like to have nearly killed her. Now she's turned the corner; I pray and hope that she's past the worst of her latest illness.
That't the worst thing about parenting a child with such severe disabilities: they can get sick at the drop of the hat; you never know when it is going to hit them; and when it does, *WHAM* Then you're left reeling, wondering if this time is going to be it.
Nashi's nearly died so many times I've lost count. It seems that if she's not at home or at school, she's livin' at the hospital. I swear I have more time at the hospital lately than in my own home; I know Hyman (my other child) must hate me (or his sister), for all the time it takes away from him.
Hyman. Such a sweet, tender child. He does get annoyed at his big sister because she can't do anything for herself but lie there and make noises; I'm sure he wishes that he had a sister who could play with him, run around, talk to him, or do things with him instead of having a sister who is blind, unable to do most things for herself. It must frustrate him deeply, and I feel bad because I feel I am responsible.
In a way I feel I am. I birthed this child. I had no idea she was sick until she started exhibiting signs, and as she got older, she became more and more helpless. Now at the age of eight-and-a-half, she's like a big baby who needs total care, and it's wearing us down, day by day.
I also feel responsible because I carried this gene for Canavan disease, and I passed it on to my oldest child. Now she suffers needlessly, and my heart bleeds for her, because there's really nothing I can do except to keep her comfortable, keep her nourished, keep her happy, or to take care of her needs.
If I can't do this, who will??
Tovah can't: he works all the time, trying to provide for our little family. Hyman can't: he's just a little guy, and he already has too much resting on his thin shoulders now at the age of six-and-a-half. And I certainly can't. I try, but I find myself failing miserably as Nashi's disease progresses. This is when I hate her Canavan disease the most because it's destroyed our family in more ways than you can possibly imagine.
While I am relieved that Nashi is getting better (she's awake, eating her "food", smiling at me when she hears my voice, or her daddy's), I am already wondering when the next crisis will come, and if I will have the strength, the stamina, to weather it. It seems I worry more about her being sick than concentrating on when she is well, and I know this can't be good for her; I know it isn't for me.
I can't help myself at times. Whenever Nashi becomes ill, it seems that my whole world stops turning. I am always afraid that I will have to make funeral arrangements because this time could be it, and as many times as I have tried to prepare for this day, I don't think I could handle Nashi dying on us. She's just a child; she doesn't deserve this!!
I want her to live forever. I know this is impossible, as we will all die, but it seems unfair that she is going to remain a child forever when she dies. She will never know what it will be like to go on a date, get married and start a family, drive a car, or graduate from college; she will probably always remain a little girl (or a teenager, if God allows her to live that long). To think of her dying always upsets me; I don't think I could deal with it. I know I couldn't.
It's something I always think about because Canavan disease kills children or babies, and there is really nothing that can be done to stop its ugly progression. That's what makes this disease so awful.
Well, I am going to go to the cafeteria, get myself something to eat, before I start the day. Hopefully Nashi will be released from here soon; I am more than ready to sleep in my own bed; these hospital couches/beds are about to undo me for the last time!!
Take care and Yeshua bless!
~Love, Terri Ben Ami. :(