A big bag of depressing...
Tonight I attended my cousin's eleven year old son's layout. It was discovered at about 3 1/2 or 4 years old that Andrew had MPS-IIIB or Sanfillipo Syndrome which is possibly the saddest genetic malady that I have ever known first hand. My cousin, Colin, and his wife have been attending to Andrew's every need 24 hours a day for longer than I can imagine doing it. The very thought of being alive but being unable to speak, walk, eat or even go to the bathroom is unfathomable to me, I guess it's sort of a blessing that after a while there really wasn't anything going on upstairs, so he didn't know what was going on, even though he seemed to be in utter pain at the end. Having to watch my child go through that, and actually having to facilitate it would be, in very real terms, a complete and utter nightmare.
Naturally my cousin and his wife were distraught, you can't attend to someone 24 hours a day for 7 or 8 years or whatever it was and not get attached to the person, especially your own child. My cousin told my mother that he was not sure how he was going to go on with his life, a disturbing notion as they have another young son who is perfectly healthy and needs his parents as much as his brother did. His wife told me that she was glad I was there and that she wished I could help them take the body back to their house so they could keep him. I really couldn't discern her level of seriousness... I mean, I don't think there was any possibility that she meant it, but I just don't know. How could I possibly identify? They had previously lost a set of twins in the early ninties, I don't recall exactly what went on with that but suffice it to say they've had some seriously shitty luck.
While at the layout I mostly stood around talking to my cousin's sister and brothers (also my cousins of course) and their significant others. One of the things that was said was that Colin had been worried about if Andrew was being taken care of where ever he was. An odd thing given that we're all baptist and have a very clear belief on where he is and who's taking care of him. (I don't wish to debate anybody on this, so please don't go there... I have my doubts and questions as well but as far as I know nobody has gone agnostic on me and that's all I'm saying here) But what one of my cousins said struck me, she said "he's taken care of he's with Dad and Granny". I stood for a moment thinking; "who the heck is granny?" and then I realized, she was refering to my own grandmother. It had never occurred to me that anyone of my generation knew her well enough to have a pet name for her. I rarely ever saw my grandmother, even though she lived nearby and I certainly never called her granny. The only times I was at her house were when my dad went over to pick berries behind her house and he'd leave me with her and she'd mostly watch TV while I was left to my own devices or when he would be called to fix her toilet or thaw the line from her oil tank when it would freeze. As far as I know we were never invited over for dinner, nor she to our house except on holidays and the only times she visited us was when my aunt would take her to the doctor and stop at our place on the way back.
On the other hand my uncle and his children actually lived with her for quite sometime, my cousins staying even after he moved out. She cooked for them constantly, and doted on them. My uncle and his wife would go over every Sunday for a home cooked meal or grandma would take them out. My mother would have Thanksgiving dinner every year for the entire family, and they would come, but they also had their own Thanksgiving and we were never invited. One of my cousin's daughters remarked about how grandma would cook her her favorite foods, and I couldn't help but think that I doubt grandma had any clue what my favorite foods were or even if it occurred to her that I had favorites and she never in her life cooked me a meal that I know of.
I don't know why any of this was, there was no bad blood. I didn't dislike my grandmother, and my dad got along with my uncle and grandmother as well as he did the other members of the family that we did hang out with. I dunno, in retrospect there must have been something going on there but the moral of the story is that I just didn't know my grandmother that well and it rattled me a little that anyone of my generation would have that level of familiarity with her. I hang on to the fact that I do know that she cared. She would call me every year on December 7th to wish me a happy birthday, even if I hadn't talked to her since the previous year. As much as I never knew what to say to her I always anticipated those calls, and I never burst her bubble and corrected her on the fact that my birthday is actually on the 6th.
But there is a saving grace here and it's that I have, although not soon enough, managed to know the love of a grandmother in recent years. Juliana's grandmother has been the grandmother that I never experienced. She dotes on me, as much as she does my wife. She checks up on us. She gives us generous gifts that she can scarcely afford. She shows us the respect that adults show each other but parents do not afford their children but she's also not shy of telling us what she thinks of our actions and opinions. She brings us laughter and plays cards with us. She shares her life experience with us and does not treat our experiences as trivial. She worries about us and she celebrates with us. For all of these things I am grateful. That chapter of my life is a quite a bit less sad and it is due entirely to her love.
I guess I went off on a ramble there, you'll have to excuse me. It was a depressing few hours attending that layout but I walk away knowing that life does go on. It always pains me when Julie or her sisters drop an opportunity to spend time with their grandmother, or each other... they don't get what they're squandering the way I get it and it's a painful lesson to learn.
Naturally my cousin and his wife were distraught, you can't attend to someone 24 hours a day for 7 or 8 years or whatever it was and not get attached to the person, especially your own child. My cousin told my mother that he was not sure how he was going to go on with his life, a disturbing notion as they have another young son who is perfectly healthy and needs his parents as much as his brother did. His wife told me that she was glad I was there and that she wished I could help them take the body back to their house so they could keep him. I really couldn't discern her level of seriousness... I mean, I don't think there was any possibility that she meant it, but I just don't know. How could I possibly identify? They had previously lost a set of twins in the early ninties, I don't recall exactly what went on with that but suffice it to say they've had some seriously shitty luck.
While at the layout I mostly stood around talking to my cousin's sister and brothers (also my cousins of course) and their significant others. One of the things that was said was that Colin had been worried about if Andrew was being taken care of where ever he was. An odd thing given that we're all baptist and have a very clear belief on where he is and who's taking care of him. (I don't wish to debate anybody on this, so please don't go there... I have my doubts and questions as well but as far as I know nobody has gone agnostic on me and that's all I'm saying here) But what one of my cousins said struck me, she said "he's taken care of he's with Dad and Granny". I stood for a moment thinking; "who the heck is granny?" and then I realized, she was refering to my own grandmother. It had never occurred to me that anyone of my generation knew her well enough to have a pet name for her. I rarely ever saw my grandmother, even though she lived nearby and I certainly never called her granny. The only times I was at her house were when my dad went over to pick berries behind her house and he'd leave me with her and she'd mostly watch TV while I was left to my own devices or when he would be called to fix her toilet or thaw the line from her oil tank when it would freeze. As far as I know we were never invited over for dinner, nor she to our house except on holidays and the only times she visited us was when my aunt would take her to the doctor and stop at our place on the way back.
On the other hand my uncle and his children actually lived with her for quite sometime, my cousins staying even after he moved out. She cooked for them constantly, and doted on them. My uncle and his wife would go over every Sunday for a home cooked meal or grandma would take them out. My mother would have Thanksgiving dinner every year for the entire family, and they would come, but they also had their own Thanksgiving and we were never invited. One of my cousin's daughters remarked about how grandma would cook her her favorite foods, and I couldn't help but think that I doubt grandma had any clue what my favorite foods were or even if it occurred to her that I had favorites and she never in her life cooked me a meal that I know of.
I don't know why any of this was, there was no bad blood. I didn't dislike my grandmother, and my dad got along with my uncle and grandmother as well as he did the other members of the family that we did hang out with. I dunno, in retrospect there must have been something going on there but the moral of the story is that I just didn't know my grandmother that well and it rattled me a little that anyone of my generation would have that level of familiarity with her. I hang on to the fact that I do know that she cared. She would call me every year on December 7th to wish me a happy birthday, even if I hadn't talked to her since the previous year. As much as I never knew what to say to her I always anticipated those calls, and I never burst her bubble and corrected her on the fact that my birthday is actually on the 6th.
But there is a saving grace here and it's that I have, although not soon enough, managed to know the love of a grandmother in recent years. Juliana's grandmother has been the grandmother that I never experienced. She dotes on me, as much as she does my wife. She checks up on us. She gives us generous gifts that she can scarcely afford. She shows us the respect that adults show each other but parents do not afford their children but she's also not shy of telling us what she thinks of our actions and opinions. She brings us laughter and plays cards with us. She shares her life experience with us and does not treat our experiences as trivial. She worries about us and she celebrates with us. For all of these things I am grateful. That chapter of my life is a quite a bit less sad and it is due entirely to her love.
I guess I went off on a ramble there, you'll have to excuse me. It was a depressing few hours attending that layout but I walk away knowing that life does go on. It always pains me when Julie or her sisters drop an opportunity to spend time with their grandmother, or each other... they don't get what they're squandering the way I get it and it's a painful lesson to learn.