My name is Winter Gonzales. I live in Dallas, Texas, with my husband, Ric (Ricardo), and our three amazing children: ten-year-old Yasmin Graciela, seven-year-old Figueroa Miguela, and our youngest, four-year-old Creighton Juan. I am a housewife; my husband, meanwhile, works for the city, where he is a sanitation worker (i.e. garbageman).
I have a very good life, all things considering. I wish I could work, but I can't really afford to put my kids in daycare (too expensive), and most daycares around here just aren't equipped to handle children like Creighton. Creighton has special needs; he needs special help in many different areas, and I just don't trust strangers around my son because anything can happen when one least expects it. I don't want that kind of worry, so I stay home and take care of him myself; it's a better arrangement.
Creighton was born with Canavan disease, which is a fatal neurodegenerative disorder most commonly found in Eastern European Jews; however, recently, it's been discovered in non-Jewish people or people of different racial backgrounds, such as it was in our case. We are Mexican-American, but somewhere, along the line, I was found to be the carrier of this defective gene; I unknowingly passed it on to our youngest child. (Oddly, our other two children are free of the disease. There is no explanation behind this. It just happened.)
Because of his disease, Creighton can no longer walk, see, or talk. He is in a wheelhcair now, and he has recently had a feeding tube placed into his tummy (we call his feeding tube his little button) because he's lost the ability to chew and swallow his food. There was the ever-preseent risk of him choking, so we had to do this, so he wouldn't end up in the hospital's emergency room yet again with another breathing crisis.
We feed Creidghton by pouring liquid nutrition or protein foods down his little button every five hours; we also deliver his medication every four hours, day and night, in the same fashion. We also have to dress/undress him, change his diapers up to a dozen times a day, and make sure he is happy or comfortable.
Seeing that Ric works five days a week, from sunup until nearly sundown, I am the one who usually takes care of Creighton (as well as Yasmin and Figueroa). If I need help, I rely on my mama, who lives across the street from me, or one of my neighbors, Lillian, who is a retired nurse, who used to work with special children like my son. That way, I can focus on the girls and not take away any time from them by spending more time with Creighton; they need their mama as much as our youngest does, and it gives them a chance to talk to me and papi about whatever is bothering them.
When Creighton is in the hospital, our world stops. Ric can't be at the hospital as he works so many hours; as for me, I'm the one who usually stays with Creighton while he's sick. Mama or Lillian stay with the girls and takes care of them wheenver Ric isn't around. Sometimes when Creighton is very ill, almost to the point of certain death, I don't leave the hospital for days until I know that all is well again; I hate the thought of not being there whenever a crisis situation crops up (in which they sometimes do).
It isn't easy to raise such a medically fragile child, but we try the best way we can to make sure that he has all he needs and that he is well loved and cared for. We have a lot of love for Creighton, and we would do anything to have him smile, laugh, talk, or even walk again. Now that doesn't seem possible, we want to make what is left of his life memorable and full of joy. So that is why I take care of him at home when putting him in a group home for severely handicapped childen would seem like the better choice.
*To be continued.*
