Aasha Singh here. I thought I would update you on how things are going with us.
We have our good days as well as our bad days. Some days, I have very few problems caring for my beautiful children, Sanjeet and Vida; other days, tears threaten to spill, and I'm yelling at anyone who's within close proximity of me.
Vida, who is now ten, has been a big help to me. When I'm tied up with her little brother, she does the housework, along with her daddy, Manjeet. I am very proud of her; however, I feel I'm robbing her of her childhood. She should be a little girl, not helping care for her little brother, who is more like an infant than an almost-five-year-old, or doing the household chores!
Remember when I last wrote, I mentioned that some of our family were coming for Christmas from India? Well, some of them haven't seen Sanjeet since he had his accident; I worried what they might say or think. It was really horrible!
Well, they came. We had a most wonderful visit; however, I knew they were disappointed in me for not protecting Sanjeet. I couldn't help it; it was a horrible accident that shouldn't have happened! I somehow feel it is my fault that Sanjie ended up in the predicament he did because I wasn't there to protect him!
For a long time, I blamed Manjeet for Sanjeet's problems. We ended up having to go to treatment (therapy) together: we couldn't deal with what'd happened to our son.
Now all that is behind us; we live day by day. We pray to our god to spare us, to let Sanjie live one more day, give us patience in dealing with his many needs. We also have nurses come, help out; that is best because when they come, Manjeet, Vida, and myself can go out for a few hours: perhaps out to lunch, to a movie, even to the mall, where we can act like a normal family.
Sometimes Sanjie comes with us. It's not easy being stared at, having people finger-point at you, or saying things about your child. This is when I wish he were dead or perhaps in a hospital (or institutional) setting. Perhaps not the best choice, but I've had these thoughts before, more than once.
Sanjeet will be five years old next month. You wouldn't know it from looking at him: he lies in his crib or sits in his wheelchair, unable to move, talk, do anything. He cannot eat by himself (he is fed by a gastrostomy tube in his belly), he is not potty-trained, and doctors hold no hope of him ever getting better. Yet we soldier on, try to make him as happy, comfortable as possible, try to keep him from ending up in the hospital yet again with another one of his respiratory illnesses.
Sanjie can't swallow or chew; this leaves him predisposed to getting pneumonia or any other respiratory bug, which would, more than likely, kill him (or, at the very least, make him deathly sick). We do all we can to prevent this from happening; we aren't always successful.
Or maybe we are because Sanjeet is still with us.
Since it is winter now, we keep our son indoors as much as possible. If he does have to go out in the weather (such as when he has therapy or sees one of his many doctors at hospital), we bundle him up as best as we could, pray to our god to keep him well.
He has therapy twice a week, sees his doctors at least every other week. It seems we are always at one of two places: at hospital or at one of his doctor's offices, waiting for yet another appointment.
I just thank our god we have insurance or else we would have been on the streets long ago! I don't know how people without insurance function, particularly those who are facing the same challenges as we are!
We are looking forward to the beginning of spring; that way, we can get out, enjoy the warmer temperatures, hear the birds singing, smell the flowers, enjoy life as a family. I am more than ready for this cold, snowy weather to end; I am beyond sick of it!! LOL
Well, I must go: time to change Sanjeet, give him his seizure medicine, and hook him up to his feeding pump; it's breakfast time for him. Take care, and I will write in here again soon! So long for now!
~Aasha Singh. :(
