Thus far I’ve painted a pretty picture of myself. You’ve journeyed
with me through my son’s early years, you know that he’s my living
proof that dreams can come true and by now, you know that my faith is my
best and most formidable asset in life.
There are some things that you don’t know. I get scared. I worry that I’m not doing enough, I worry that I’m still on this beautiful island – where they don’t have a fraction of the resources that he’d have in the States. I worry that my decision to raise him as I would a sighted child – letting him walk without a cane and putting him in regular school, will one day haunt me as much as the memory of Lady Gaga’s meat dress does. I’ve been assured that most Mothers have similar worries, but my ridiculously bitten nails are testament to the fact that I never do anything half assed.
Lately things have been very difficult. Gabriel hates his lens, calls it his enemy. He takes it out every single night and tries to hide it. Luckily, he’s terrible at hiding things and I’ve gotten really good at slapping that sucker back in. It’s only supposed to come out once a week to be cleaned. Repeated removals and insertions might make his eye lids saggy, leading to more surgery. So we’re talkin’ about some serious shit right here, but Gabriel is only five. He’s psychologically unable to see the future beyond his next lollypop. I’ve been taking away his gaming privileges in response to his disobedience, but that is proving to be a punishment only for me.
My heart is breaking for him. His lens is about the size of a concave Quarter and twice as thick. During all of his eye trials; the never ending, uncontrollable Glaucoma, the tests, the surgery I’ve insisted on taking ever drop he was dispensed myself. I wanted to be able to experience exactly what he was experiencing, so I could tell him what to expect. I can’t bring myself to put that lens in my own eye. I got as far as the bathroom, with a tiny bottle of wetting drops and a large bottle of whiskey, but neither bottle held any courage (plus at my age saggy eyelids are no joke) so I have no idea what he’s going through. I can’t even wear clothes that in anyway touch my body, how can I insist that he sleep with a half a pound of plastic in his eye? Because I have to. I’m the Mommy.
Tonight my boy is getting his last sweet warning about leaving his lens alone. If he takes it out again, tomorrow night he’ll be sleeping with the same plastic basket he wore over his eye immediately after his surgery. There will be so much medical tape holding that basket on my baby’s sweet face, that I’ll have to use the Jaws of Life to get it off in the morning. Harsh? Nah, Duct Tape would be harsh.
By now, you realize what I’m doing with this blogging project. I’m trying, as I have since my son’s diagnosis, to be a light in the darkness. This time, I’m trying to shine my little spark beyond the walls of my home. I’m trying to reach parents who are in similar situations, who are overwhelmed in the face of their child’s disability. Parents who are scared and can’t possibly imagine what their children’s lives will be like. In order to do that with my whole ass, you have to know the whole truth, not just the happy spin I can put on things after I’ve had a chance to process them.
I’m here to say it’s going to be ok. It’s not all going to be roses and cheesecake, it’s not always going to be easy, sometimes it may even be really weird, but it WILL be ok. Gabriel and I are going to get through this lens thing just like we’ve gotten through everything else, one tiny victory at a time.
There are some things that you don’t know. I get scared. I worry that I’m not doing enough, I worry that I’m still on this beautiful island – where they don’t have a fraction of the resources that he’d have in the States. I worry that my decision to raise him as I would a sighted child – letting him walk without a cane and putting him in regular school, will one day haunt me as much as the memory of Lady Gaga’s meat dress does. I’ve been assured that most Mothers have similar worries, but my ridiculously bitten nails are testament to the fact that I never do anything half assed.
Lately things have been very difficult. Gabriel hates his lens, calls it his enemy. He takes it out every single night and tries to hide it. Luckily, he’s terrible at hiding things and I’ve gotten really good at slapping that sucker back in. It’s only supposed to come out once a week to be cleaned. Repeated removals and insertions might make his eye lids saggy, leading to more surgery. So we’re talkin’ about some serious shit right here, but Gabriel is only five. He’s psychologically unable to see the future beyond his next lollypop. I’ve been taking away his gaming privileges in response to his disobedience, but that is proving to be a punishment only for me.
My heart is breaking for him. His lens is about the size of a concave Quarter and twice as thick. During all of his eye trials; the never ending, uncontrollable Glaucoma, the tests, the surgery I’ve insisted on taking ever drop he was dispensed myself. I wanted to be able to experience exactly what he was experiencing, so I could tell him what to expect. I can’t bring myself to put that lens in my own eye. I got as far as the bathroom, with a tiny bottle of wetting drops and a large bottle of whiskey, but neither bottle held any courage (plus at my age saggy eyelids are no joke) so I have no idea what he’s going through. I can’t even wear clothes that in anyway touch my body, how can I insist that he sleep with a half a pound of plastic in his eye? Because I have to. I’m the Mommy.
Tonight my boy is getting his last sweet warning about leaving his lens alone. If he takes it out again, tomorrow night he’ll be sleeping with the same plastic basket he wore over his eye immediately after his surgery. There will be so much medical tape holding that basket on my baby’s sweet face, that I’ll have to use the Jaws of Life to get it off in the morning. Harsh? Nah, Duct Tape would be harsh.
By now, you realize what I’m doing with this blogging project. I’m trying, as I have since my son’s diagnosis, to be a light in the darkness. This time, I’m trying to shine my little spark beyond the walls of my home. I’m trying to reach parents who are in similar situations, who are overwhelmed in the face of their child’s disability. Parents who are scared and can’t possibly imagine what their children’s lives will be like. In order to do that with my whole ass, you have to know the whole truth, not just the happy spin I can put on things after I’ve had a chance to process them.
I’m here to say it’s going to be ok. It’s not all going to be roses and cheesecake, it’s not always going to be easy, sometimes it may even be really weird, but it WILL be ok. Gabriel and I are going to get through this lens thing just like we’ve gotten through everything else, one tiny victory at a time.
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