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May. 15th, 2007 04:22 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishI told Shannon that the last four months have been the happiest of my life, and this is essentially true. I've been exhausted, stressed, filled with anxiety about the future, and all that. But there is this happiness down at the core that is somehow ... more significant? stronger? true-er? - I'm not sure of the right word ... than anything I've felt before. I've been in love, but somehow love for Shannon plus love for Nico is really different. Love for family, my family, me (grunt) pater familias. It's not patriarchal, but I like it that I can feed my family, provide for it. And when Nicholas smiles at me, which he does 30-50 times a day, that deep happiness just swells to the fore.
But there's fear and sadness too. I feel it most keenly when I see other boy children - riding their bikes, playing baseball, walking in the creek, babbling to their parents in the supermarket - and I don't get to think, my son will be there someday too! We know nothing about who he'll be, we can't put the pressure on him, or on us, of unrealistic expectations, and yet we must put pressure on him and us to have unrealistic expectations. He's physically in great shape; no medical issues except for a few questions about his degree of hearing (not whether or not he can hear, just how well). He's making it through this first stage of development with flying colors, but we just have no idea about where he goes from here. I catch myself with the silly fantasies that many fathers probably have about their sons - my son, the major league pitcher, for example. It's not realistic for any parent. I'm pretty sure it's not helpful for me. I'm pretty sure, though, that to deny such fantasies is to lower the bar too far and depress me. Yet having it is depressing too, because it brings home the questions of disability.
Lately, there have been lots of stories about abortion (because of the Supreme Court and Giuliani's statement, mostly), and these get ties up with issues of Down Syndrome. Apparantly (according to the Times, I think), 90% of all women who have a fetus diagnosed with D.S. have an abortion, regardless of whether they are pro-choice or pro-life. This last piece is what makes it a politically charged issue in particular, although there's lots of questions of eugenics and "slippery slopes" that follow. We didn't know Nicholas had Down Syndrome in utero, we didn't even know he was in utero until the 20th week or so, past the "quad-screening" deadline, and so we'll never know what we would have done had we known. The whole debate on when an embryo becomes a child is pretty charged, but obviously Nicholas is a child and it's impossible to consider such issues without thinking of the beautiful, healthy, wonderful creature he is. However, Shannon and I had an unexpected pregnancy once before, when we had been dating only a few months. We, well, she with my support, decided to keep the child and we'd just figure out what it meant from there. A week or so later, she had a miscarriage (and yes, she's given me permission to post this). All that means is that she and I once had a discussion on whether to keep a child that we really, really, were not ready for, and that we decided to do so. So, had we known that our child had that extra chromosome, I'm pretty sure we would have continued with the pregnancy anyway.
Especially because our doctor would have told us that it would probably mean some physical and mental developmental delays, but that he'd likely grow up to be anywhere from reasonably functionable to fully independent and that most of the major medical and developmental issues with Downs can now be treated. If we had been told, as once was the MEDICAL terminology as recently as the 70s, that we were having a "Mongoloid Idiot" who would have an IQ no higher than 20 and never be able to dress himself, clean himself, recognize his parents, speak, etc ... we might have made a different choice.
All of this is hypothetical. Interesting, if morbid, thought patterns. Except that Shannon and I plan to have another child, will go through all the testing this time around including amniocentisis I expect, or there's a way of finding the baby's blood cells in the mother's blood, and should know. It's a scary scenario that does have a way of keeping me up at night, even while savoring the life of my wonderful boy, and being so grateful that he's sharing it with us.
But there's fear and sadness too. I feel it most keenly when I see other boy children - riding their bikes, playing baseball, walking in the creek, babbling to their parents in the supermarket - and I don't get to think, my son will be there someday too! We know nothing about who he'll be, we can't put the pressure on him, or on us, of unrealistic expectations, and yet we must put pressure on him and us to have unrealistic expectations. He's physically in great shape; no medical issues except for a few questions about his degree of hearing (not whether or not he can hear, just how well). He's making it through this first stage of development with flying colors, but we just have no idea about where he goes from here. I catch myself with the silly fantasies that many fathers probably have about their sons - my son, the major league pitcher, for example. It's not realistic for any parent. I'm pretty sure it's not helpful for me. I'm pretty sure, though, that to deny such fantasies is to lower the bar too far and depress me. Yet having it is depressing too, because it brings home the questions of disability.
Lately, there have been lots of stories about abortion (because of the Supreme Court and Giuliani's statement, mostly), and these get ties up with issues of Down Syndrome. Apparantly (according to the Times, I think), 90% of all women who have a fetus diagnosed with D.S. have an abortion, regardless of whether they are pro-choice or pro-life. This last piece is what makes it a politically charged issue in particular, although there's lots of questions of eugenics and "slippery slopes" that follow. We didn't know Nicholas had Down Syndrome in utero, we didn't even know he was in utero until the 20th week or so, past the "quad-screening" deadline, and so we'll never know what we would have done had we known. The whole debate on when an embryo becomes a child is pretty charged, but obviously Nicholas is a child and it's impossible to consider such issues without thinking of the beautiful, healthy, wonderful creature he is. However, Shannon and I had an unexpected pregnancy once before, when we had been dating only a few months. We, well, she with my support, decided to keep the child and we'd just figure out what it meant from there. A week or so later, she had a miscarriage (and yes, she's given me permission to post this). All that means is that she and I once had a discussion on whether to keep a child that we really, really, were not ready for, and that we decided to do so. So, had we known that our child had that extra chromosome, I'm pretty sure we would have continued with the pregnancy anyway.
Especially because our doctor would have told us that it would probably mean some physical and mental developmental delays, but that he'd likely grow up to be anywhere from reasonably functionable to fully independent and that most of the major medical and developmental issues with Downs can now be treated. If we had been told, as once was the MEDICAL terminology as recently as the 70s, that we were having a "Mongoloid Idiot" who would have an IQ no higher than 20 and never be able to dress himself, clean himself, recognize his parents, speak, etc ... we might have made a different choice.
All of this is hypothetical. Interesting, if morbid, thought patterns. Except that Shannon and I plan to have another child, will go through all the testing this time around including amniocentisis I expect, or there's a way of finding the baby's blood cells in the mother's blood, and should know. It's a scary scenario that does have a way of keeping me up at night, even while savoring the life of my wonderful boy, and being so grateful that he's sharing it with us.
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no subject
Date: 2007-05-16 02:21 am (UTC)I think the answer is to just hold your breath and dive into the deep end; you two will find the right answers for yourselves when the time comes, and be thankful we still (for now) live in a country where we can make those choices.
I'm so happy to read about the joy you are experiencing as a parent. It's impossible to describe with adequate words to non-parents, which I don't mean condescendingly -- I just know that when it hit me, I realized nothing, no words, could have prepared me for how I felt.
I know I've said it before, but those doubts about the future don't just belong to us, the parents of kids with disabilities. They plague every parent, though obviously in different ways and quantities. Will my child reach his/her potential? Will he be someone I like? Will he be good? Will he follow my political agenda? It is different, I think, fretting about whether your child will be self-sufficient... but in some ways I'm increasingly aware (especially since Glory was born) that it's a graded slope of worries.
no subject
Date: 2007-05-16 04:52 am (UTC)We should have your family over for dinner some time. Probably some time after after our puppies and your son are a bit older even if that puts us into a timeframe when you'll be visiting from Chicago. But maybe before, we shall see.
no subject
Date: 2007-05-16 11:28 pm (UTC)no subject
Date: 2007-05-16 11:29 pm (UTC)no subject
Date: 2007-05-16 11:30 pm (UTC)