We never thought it would be this bad. This hard. This...challenging.
When we planned to adopt a child from Russia, we wanted a daughter. Any age, any disability would do; however, we felt betrayed when the adoption agency (since out of business) told us that the child in question was "only mildly disabled". When we got her, we were in for a shock.
Not only was our new daughter disabled: she was severely disabled. Blind and stricken with total (quadriplegic) cerebral palsy, coupled with profound mental retardation. She was six years old, but she was more like an infant who needed a lot of care.
That was three years ago.
Now Lilia is nine. Developmentally, physically, and mentally, she hasn't really made much in the way of progress. She has to be fed by a tube in her belly every five hours (she gets her medications this way, too, every four hours, around the clock). Lilia has to be dressed, diapered, bathed, kept as comfortable as possible. She is unable to see or talk, let alone, do much of anything on her own.
She will never walk: she will always be in a wheelchair.
Our lives are consumed with work and taking care of Lilia. The only break we get is when we are out of the house, working, in order to make a living, so we can pay the ever-mounting medical bills. Or we have respite care people come to our house two nights a week, so Jim (he's my husband) and myself can go out for the evening, just to get away from the demands of caring for a severely handicapped child.
Our other children, Tansy (10) and Pieter (also adopted from Russia; he was adopted at the age of five; he's twelve now), resent their little sister because, in Pieter's words, "she ain't any fun". They hate that she takes away time from them. They hate that she can't do anything except lie there, poop, pee, or make her noises on a frequent basis.
She does this day and night, as a way of "communicating" with us, as she can't speak with words.
I believe they do love her deep down; however, I am not so convinced whenever I hear them grousing about Lilia being a pain in the bucket or being embarrassed by her behavior whenever they have friends over.
They don't like to have their friends over because Lilia makes them uncomfortable.
Fact is, Lilia makes a lot of people uncomfortable, kids as well as adults. They stare, point, or say things.
Right now, our lives are in turmoil. We'd love to add to the family; on the other hand, we are afraid of being lied to again, or getting another child who is anything but we imagined he (or she) would be.
We don't want to have to raise another Lilia; one child like her is more than enough!
*to be continued.*
