I have learned to bite my tongue when people tell us our child is here for a reason, that she is a blessing from God, or that we've been chosen for this particular "mission in life", taking care of a child who is disabled.
If it's such a blessing, then why isn't everybody praying for a disabled child? It all sounds so absurd!
In fact, if God is so good, why, then, would He allow an innocent child to suffer so needlessly? Why doesn't He just come off His Big Throne in the Sky and just take away our child's problem--let alone, all disabilities or diseases? Why did God allow our child, our Miranda, to be born unable to move, see, hear, speak, or do anything for herself?
Miranda June is fourteen years old; yet she is clearly different than most kids her age. Our daughter should be doing "normal", everyday "tennaged girl" things: things like talking on the telephone or IM'ing each other, going shopping at the mall, reading the latest books or going to the latest movies, or doing homework; instead our Mandy can't do anything at all. she cannot walk, talk, take a bath, dress herself, brush her hair (or her teeth), feed herself, or even go to the restroom without help. At fourteen, she is more like a baby: she neesd help with just about every aspect of her life, and caring for her is a 24-hour-a-day job.
No weekends or holidays off, either. And no pay. Except for paying her bills, which are wiping us out financially. Caring for a child like Mandy is expensive; it is not cheap.
People may mean well, but when they say how blessed we are to have a child like Mandy, I get pissed off, want to tell them to go fuck off. For one thing, I don't even believe in God. Why should I? As far as I'm concerned, He doesn't even exist; I don't want to bother discussing it with other people because I don't have any use for Him!
If I sound angry, well, you're right. I AM angry. Damn angry!! I haven't had a decent vacation since Mandy came into our lives; every waking hour is spent withher, and I'm oftentimes so tired it is all I can do to keep from going crazy! At times, I get so fucking frustrated I want to kill my daughter; that way, I wouldn't have to worry about her any longer!!
