If we knew then what we knew now, maybe it would have been better if Annelih Grace, our daughter, hadn't been born ...
Annelih is six years old. She is also severely handicapped. Born this way: significant brain damage, accompanying physical disabilities. Cerebral palsy: the spastic kind where all four limbs are affected. She will probably never walk (let alone, do much of anything else) on her own. Blind. Profoundly mentally retarded. She has the mind of a six-month-old baby, even though she is six years old.
We figured she would be better off being home with us, but lately, we have been doubting our capabilities in caring for her. Annelih gets sick frequently; it seems she is in the hospital every month or so. It seems that no matter what we do for her to make her happy or comfortable, it is never good enough, and the stress of caring for such a needy child is starting to take its toll on our family.
For example, Tom (my husband) and myself argue just about every day about Annelih, and her brother Tate and sister Sabrina don't think she is very much fun because "she can't do anything but sit in her wheelchair, poop in her diapers, and drool like an idiot" (as Tate puts it). To do even the simplest things takes planning because we have to load up her wheelchair, her special foods (she is fed by a tube in her belly; she cannot swallow or chew on her own), her diapers, and supplimental oxygen tanks/tubing. That's another thing: Annelih also has serious lung issues; this is another reason why she is in the hospital so often.
Whenever we have Annelih with us, people stare. They point. They say things. They never seem to look past her obvious disabilities; all they see is the wheelchair, the drooling, the spastic limbs, nothing else. They don't see the child we do, and it breaks our hearts, each and every time.
Lately, Tom and I have been discussing having our daughter placed in a home for severely handicapped children, but what good would that do? It may allow us to lead more normal lives, to spend more time with Tate and Sabrina, but then again, many of these facilities are severely understaffed, and the children there often don't get the care/supervision they sorely need. There's always the threat of abuse and violence, and I am sorry, but I am not subjecting Annelih to that kind of environment. She deserves far better than that!
It would also allow us to be able to do more things as a family, but again, we would probably end up missing Annelih because even though she is severely disabled, she is still our child, and we should love her and take care of her just as we do our two "normal" children (what is "normal, anwyay??). We are in a catch-22 situation, and we don't see it easing up anytime soon!
What, then, do we do? We love Annelih, but her needs are driving us apart, and we don't know what else to do in order to help her! Please give us any advice; any help would be greatly appreciated!
~Ashleigh Kay Evans, Tacoma, Washington. :(
