Nico - Year 2
Jan. 24th, 2008 07:08 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishI often find it extraordinary that Shannon and I have had Nico for a year now. It still seems so new, startlingly new. It's been a wonderful year, filled with the kind of blessings that cheesy advice books discuss. It's been a very hard year, also filled with the kind of difficulties that cheesy advice books give out. At least I assume this is the sort of thing they discuss. I don't really read them.
It has been hard. My health has suffered - not in any dramatic ways, but my cholesterol is up, I get headaches, and I never exercise. Shannon and I were trying to figure out how I could exercise, but neither of us sees a way. If I got up earlier in the morning or got to school earlier in the morning to use their gym, I'd just be leaving Shannon with more time alone with Nico. We both try hard to be there for each other, especially as we've gone away from childcare. But anyway, these are but mild issues faced by all parents and it will, I hope, sort itself out over time. When the weather is better, I'll be able to bike to work and back, and that will help a little.
At any rate, these are trivial things. The truth is that our son is doing well and only rarely do I worry about his future. Sometimes, and I find no comfort in the oft-heard cry that he's still within typical range. I talk about Nico's speech, and am told that lots of babies don't talk at one. Same thing with walking. Pincer grip. Etc. He's doing wonderfully, but he isn't doing other things, and I worry.
Shannon and I have dreams of farms or shops (depending on me in the city or me in the country, long-term), which would not only afford her a chance to make or sell cheese, and which might also provide employment and a happy life to our boy. Sometimes, it makes me sad to think of a narrow range of possibilities for him. But not usually. Usually, we play. We both work at hard at integrating therapies into his play, but rarely at the expense of fun.
A few interesting recent episodes.
I was at a baptism (complete with pre-baptism exorcism) at a Romanian Orthodox church last week. The mother of a parent was admiring Nico. I was watching him do the splits up and down and talking about how I was trying to train him out of it. She asked why, I mentioned therapists, and then mentioned that Nico has Downs. She said, "But he's so beautiful." And I was torn. My first impulse is to agree - he is beautiful. My second impulse is to defend all the beautiful children I know with Downs. My third impulse, the guilty one, is to be grateful that Nico does not quite look like other kids with Downs. I know the look she means, and if you catch Nico from the right angle, in some of his photographs, he sure has it - the eyes, the chin, the droop. Mostly, he doesn't. Out loud, of course, I agreed that he was beautiful but did say that all of the kids I knew with Downs were beautiful (a little more tactfully than that), and we moved on.
I met parents of a little boy named Jack at Gigi's the other day. I held him and talked to them about things on their mind - therapies, health issues (he, like Nico, didn't really have any), and, as always happens, how we found out. I wonder when that will stop being such an important part of every new encounter. You meet parents, you chat amiably, you ask about hearts and therapists, and then you ask how you found out. We share this moment, and I don't have any more difficult or painful moments in my life to share, at the drop of a hat. Their story was that there was a C-section, the baby was born, and the doctor came to tell the father a little while later (while the wife was recovering from surgery). He asked the doctor to tell his wife.
My story I've written about before. Nico came out, all blue and limp-limbed. The midwife of thirty years experience looked at him as he was being cleaned up and made to breathe, and I noticed one eye wasn't really opening well. I asked if something was wrong with the eye, and she said no, but asked me if Shannon and I had done any genetic counseling (which is what they call it now). I replied that we had not, and she said, "Well, Nico is showing signs indicative of Down Syndrome." Which sounds like I remember it vividly, but I do not. It's all a blur, in fact, a dizzy moment of horror. "What does that mean?" She replied that it meant that he was at risk for a number of health issues, had low muscle tone (which she thought we could see, but was really due to a lack of oxygen), and would likely show some kinds of developmental delay. Shannon, despite the drugs and the pain and the delivery and everything, seems to have realized that something was wrong, and asked me if her baby was ok. I tried to stall for a second, but she was having none of it. I asked the midwife if I could, should, tell her. She told me to, and I did. I think I said that he was fine, though having a little trouble getting oxygen right now, but that the midwife thinks he had Down Syndrome.
I'm pretty sure it was saying those words to Shannon that was the worst moment. Later, we cried.
What's amazing is that we tell these stories so easily. We tell them to each other all the time.
After that first hour, things have been really good. Now that this post is out of my system, it's on to happy baby videos!
It has been hard. My health has suffered - not in any dramatic ways, but my cholesterol is up, I get headaches, and I never exercise. Shannon and I were trying to figure out how I could exercise, but neither of us sees a way. If I got up earlier in the morning or got to school earlier in the morning to use their gym, I'd just be leaving Shannon with more time alone with Nico. We both try hard to be there for each other, especially as we've gone away from childcare. But anyway, these are but mild issues faced by all parents and it will, I hope, sort itself out over time. When the weather is better, I'll be able to bike to work and back, and that will help a little.
At any rate, these are trivial things. The truth is that our son is doing well and only rarely do I worry about his future. Sometimes, and I find no comfort in the oft-heard cry that he's still within typical range. I talk about Nico's speech, and am told that lots of babies don't talk at one. Same thing with walking. Pincer grip. Etc. He's doing wonderfully, but he isn't doing other things, and I worry.
Shannon and I have dreams of farms or shops (depending on me in the city or me in the country, long-term), which would not only afford her a chance to make or sell cheese, and which might also provide employment and a happy life to our boy. Sometimes, it makes me sad to think of a narrow range of possibilities for him. But not usually. Usually, we play. We both work at hard at integrating therapies into his play, but rarely at the expense of fun.
A few interesting recent episodes.
I was at a baptism (complete with pre-baptism exorcism) at a Romanian Orthodox church last week. The mother of a parent was admiring Nico. I was watching him do the splits up and down and talking about how I was trying to train him out of it. She asked why, I mentioned therapists, and then mentioned that Nico has Downs. She said, "But he's so beautiful." And I was torn. My first impulse is to agree - he is beautiful. My second impulse is to defend all the beautiful children I know with Downs. My third impulse, the guilty one, is to be grateful that Nico does not quite look like other kids with Downs. I know the look she means, and if you catch Nico from the right angle, in some of his photographs, he sure has it - the eyes, the chin, the droop. Mostly, he doesn't. Out loud, of course, I agreed that he was beautiful but did say that all of the kids I knew with Downs were beautiful (a little more tactfully than that), and we moved on.
I met parents of a little boy named Jack at Gigi's the other day. I held him and talked to them about things on their mind - therapies, health issues (he, like Nico, didn't really have any), and, as always happens, how we found out. I wonder when that will stop being such an important part of every new encounter. You meet parents, you chat amiably, you ask about hearts and therapists, and then you ask how you found out. We share this moment, and I don't have any more difficult or painful moments in my life to share, at the drop of a hat. Their story was that there was a C-section, the baby was born, and the doctor came to tell the father a little while later (while the wife was recovering from surgery). He asked the doctor to tell his wife.
My story I've written about before. Nico came out, all blue and limp-limbed. The midwife of thirty years experience looked at him as he was being cleaned up and made to breathe, and I noticed one eye wasn't really opening well. I asked if something was wrong with the eye, and she said no, but asked me if Shannon and I had done any genetic counseling (which is what they call it now). I replied that we had not, and she said, "Well, Nico is showing signs indicative of Down Syndrome." Which sounds like I remember it vividly, but I do not. It's all a blur, in fact, a dizzy moment of horror. "What does that mean?" She replied that it meant that he was at risk for a number of health issues, had low muscle tone (which she thought we could see, but was really due to a lack of oxygen), and would likely show some kinds of developmental delay. Shannon, despite the drugs and the pain and the delivery and everything, seems to have realized that something was wrong, and asked me if her baby was ok. I tried to stall for a second, but she was having none of it. I asked the midwife if I could, should, tell her. She told me to, and I did. I think I said that he was fine, though having a little trouble getting oxygen right now, but that the midwife thinks he had Down Syndrome.
I'm pretty sure it was saying those words to Shannon that was the worst moment. Later, we cried.
What's amazing is that we tell these stories so easily. We tell them to each other all the time.
After that first hour, things have been really good. Now that this post is out of my system, it's on to happy baby videos!
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no subject
Date: 2008-01-28 03:46 pm (UTC)I come from a working-class, one-of-the-masses background, and J from more of an upper-middle-class, big-fish-in-small-pond, one; in his family everyone has gone to college for several generations, and in my family no one did before my generation, and by no means all of us. We have seen, on balance, I think, at least as much life-satisfaction in my family as in his, so we have gone forward with the idea that people can lead happy, satisfying lives in a variety of ways.
Two of our kids (Em and Patrick) have chosen not to go to college; Ben graduated from the U, and R plans to go to college (she's a junior in high school). J's mother has been rather horrified; when she urged us to push E to go, saying, "Sometimes we know better than they do," my answer was, "There's one thing Em knows better than anyone else, and that's how to be Em." To help her be the Em she wants to be--that's what we aim for. (And the same for the others.)
But when they want something they can't achieve--and this is what I referred to with P--that's what hard. We've always tried to be open about the things we might want (or have wanted along the way) that weren't within reach, and to reflect on our own good fortune to have and do the things we have and do. So, we think about modeling "bloom where you're planted" as much as we can, and that comes around and helps us, too. But it's never easy for a parent to see a child not be able to do what the child wants.
This is never "Stop complaining and look at how lucky you are"; we let them--at times, urge them to--talk about what's missing. Again, we try to model an acknowledgment of both what we have and what we wish we had. It's OK to feel whatever we feel.
Nico has the potential to have a happy, satisfying life. It might not be a life that would satisfy you if you had it, but that isn't what matters. It's his dreams that matter. There's one thing Nico will know better than anyone else: how to be Nico.