I close my eyes and I still see the white walls and the cheap, purple-and-pink flowered plastic curtains of this room, where my daughter is currently. I am beginning to hate it more and more with each passing day. Another day of this and I am about to crack. I don't think I can take too much more of this ...
My daughter, who has mitochondrial disease, is seriusly ill with a bad case of aspiration pneumonia. Her condition, at this point, is critical at best. Pneumonia, the bacterial kind, has invaded the spaces of both lungs, causing great difficulty in breathing and requiring the use of a mechanical ventilator, so her lungs can get a chance to rest and heal. The doctors have her knocked out so she doesn't accientally dislodge any of the tubes and wires.
This isn't the first time that Mackenzi has been down this road, unfortunately. her condition makes her susceptible to any little germ that may happen to wander along. Her lungs are weak, as is her immune system; she is unable to eat on her own, and requires 24-hour care (I'm her primary caregiver). Having a child like MacKenzi has caused great strife and discord among our family. My son who is nine, resents his little sister (MacKenzi is six), my husband has to work two jobs in order to try to provide for our needs (and to where I can pay off some of Macki's mounting medical bills which never seen to stop coming), and my mother thinks that I am a terrible parent because I'm hardly ever there for Maddox.
I'm sorry; I can't help it. MacKenzi needs my help; if I won't do it, who will??
The only break I get from my family is when I'm at the hospital with MacKenzi. And then I begin to resent MacKenzi because of what is going on with her; sometimes it gets so bad I wish nothing more than for her to die, so she can stop suffering so much, and I can get my life back!
Then I get mad at the doctors and nurses because some of them have absolutely no clue how to deal with a child like mine. Mitochondrial disease is not that common as it is, so Macki is, more or less, a human little guinea pig for them to run their latest tests on, to see if there is something more going on. I am so sick of hearing her cries when they poke or prod her repeatedly I want to SLUG each and every one of them!
I don't know what to do anymore. I don't want my daughter to die, but if her life is going to be nothing but one heartbreak after another, with no hope for recovery or improvement, then what's a mother to do????