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Oct. 21st, 2007 09:33 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishSometimes I notice that I am constantly exposing myself, emotionally speaking (ahem), in my day-to-day existence. It wasn't that I was so guarded before, but now ... it's everyday that I open my heart. This may not be positive.
It happens in the moment of disclosure. I work it in fast. Mostly, those to whom I speak are too busy dealing with their own reactions to my studiously calm, practiced, off-handed, statement, "My son has Down Syndrome, and ..." to notice. I take that "and" and launch into some story of medical concerns, developmental stages, explanations as to why one thing or the other is happening, stories about playtime with other children, really anything. I want people to know, I want to get it over with, so that we can move on to whatever the conversation is. But I don't want to deny it, hide it, or ever appear to conceal the fact that my son has Down Syndrome. So I drop it quickly in new conversations, putting a practiced-face over the fears.
I thought about this phrase, the way I say it and why I say it, yesterday at a party with faculty yesterday. It was good, dropped into conversation, and moved on. No one there sees Nico as particularly disabled; rather, they saw an adorable baby dressed as a penguin (pictures to follow)!
It's the openness of raising this subject that is so tender, so deep, in the way that it works in my psyche. The playgroups sometimes function, I suspect, as group-therapy sessions for the parents. We sit around and tell each other our stories, but we do so without tears. Maybe its better just to talk as if this were normal. There's the mother of the girl who has only one leg, whose daughter was given but 5% chance to live in the hospital. A blood clot formed in her limb and it went gangrenous, so they had to amputate. She's great, crawling around and smiling, pulling herself up, and otherwise being adorable. The mother says, "We traded a limb for a life." How many times has she said that? How did she learn to say it so calmly, so earnestly? It's much more difficult than, "My son has Down Syndrome, and ..."
There's the mother whose son kept getting sick and having to be taken to the hospital for days. Eventually, the health insurance told her that they wouldn't pay for hospital visits anymore unless they institutionalized her boy. It was too expensive, he was too fragile, and they just couldn't support home care. In the institution, a new doctor figured out what was wrong with his respiratory system (I think), had a surgery, fixed it, and he's been home for almost a year now (he's two). What trauma! What pathos! To have this boy, a boy diagnosed with D.S., to get him home yet be constantly in the hospital. To have money used to force the parents to institutionalize. It may even have been the correct medical decision, who knows. But it clearly wasn't what the parents wanted. It also may have saved their lives as this doctor in Rockford figured out how to fix the problem. The mother tells me this as our boys are playing on the floor with various toys and each other. She tells it to me in a few easy sentences.
There's the mother of the little girl who always calls Nico the "typical little baby." I never know quite how to react. "Typical" is the word that used to be "normal." It means that Nico is hitting all his milestones with "typical" timing, which is true more or less. It means that his features show fewer of the Down's characteristics than many other children; although they are present and beautiful in his little face. It means that my baby is doing things that other babies there are not. Is this jealousy? Or, is she just very happy for us? She seems happy for us.
There's the mother of four children, of whom the youngest two have Down's. I hadn't met her before a big festival last week. She had a thick Hispanic (I think) accent and seemed still so deeply affected by stigma. She kept talking about the things her boy (the youngest was on her lap) couldn't do compared to her other children, but then would try and correct herself to mention things he could. She clearly loved him. She clearly saw limitations.
We lay ourselves bare. We share stories of diagnosis. I talk about Michelle, who told me, and then I had to tell Shannon. I still can't quite feel those words coming out of my mouth in memory, although I know it happened, and it must have been pretty hard. Another child's mother discusses amputation of her infant. Another the story of institutionalization. Yet another struggles with her perception of her child's limitation.
Sometimes I still feel angry about all this. This last week, with the boy in childcare for the first time all week, was difficult.
It happens in the moment of disclosure. I work it in fast. Mostly, those to whom I speak are too busy dealing with their own reactions to my studiously calm, practiced, off-handed, statement, "My son has Down Syndrome, and ..." to notice. I take that "and" and launch into some story of medical concerns, developmental stages, explanations as to why one thing or the other is happening, stories about playtime with other children, really anything. I want people to know, I want to get it over with, so that we can move on to whatever the conversation is. But I don't want to deny it, hide it, or ever appear to conceal the fact that my son has Down Syndrome. So I drop it quickly in new conversations, putting a practiced-face over the fears.
I thought about this phrase, the way I say it and why I say it, yesterday at a party with faculty yesterday. It was good, dropped into conversation, and moved on. No one there sees Nico as particularly disabled; rather, they saw an adorable baby dressed as a penguin (pictures to follow)!
It's the openness of raising this subject that is so tender, so deep, in the way that it works in my psyche. The playgroups sometimes function, I suspect, as group-therapy sessions for the parents. We sit around and tell each other our stories, but we do so without tears. Maybe its better just to talk as if this were normal. There's the mother of the girl who has only one leg, whose daughter was given but 5% chance to live in the hospital. A blood clot formed in her limb and it went gangrenous, so they had to amputate. She's great, crawling around and smiling, pulling herself up, and otherwise being adorable. The mother says, "We traded a limb for a life." How many times has she said that? How did she learn to say it so calmly, so earnestly? It's much more difficult than, "My son has Down Syndrome, and ..."
There's the mother whose son kept getting sick and having to be taken to the hospital for days. Eventually, the health insurance told her that they wouldn't pay for hospital visits anymore unless they institutionalized her boy. It was too expensive, he was too fragile, and they just couldn't support home care. In the institution, a new doctor figured out what was wrong with his respiratory system (I think), had a surgery, fixed it, and he's been home for almost a year now (he's two). What trauma! What pathos! To have this boy, a boy diagnosed with D.S., to get him home yet be constantly in the hospital. To have money used to force the parents to institutionalize. It may even have been the correct medical decision, who knows. But it clearly wasn't what the parents wanted. It also may have saved their lives as this doctor in Rockford figured out how to fix the problem. The mother tells me this as our boys are playing on the floor with various toys and each other. She tells it to me in a few easy sentences.
There's the mother of the little girl who always calls Nico the "typical little baby." I never know quite how to react. "Typical" is the word that used to be "normal." It means that Nico is hitting all his milestones with "typical" timing, which is true more or less. It means that his features show fewer of the Down's characteristics than many other children; although they are present and beautiful in his little face. It means that my baby is doing things that other babies there are not. Is this jealousy? Or, is she just very happy for us? She seems happy for us.
There's the mother of four children, of whom the youngest two have Down's. I hadn't met her before a big festival last week. She had a thick Hispanic (I think) accent and seemed still so deeply affected by stigma. She kept talking about the things her boy (the youngest was on her lap) couldn't do compared to her other children, but then would try and correct herself to mention things he could. She clearly loved him. She clearly saw limitations.
We lay ourselves bare. We share stories of diagnosis. I talk about Michelle, who told me, and then I had to tell Shannon. I still can't quite feel those words coming out of my mouth in memory, although I know it happened, and it must have been pretty hard. Another child's mother discusses amputation of her infant. Another the story of institutionalization. Yet another struggles with her perception of her child's limitation.
Sometimes I still feel angry about all this. This last week, with the boy in childcare for the first time all week, was difficult.
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no subject
Date: 2007-10-21 03:29 pm (UTC)What I always find interesting is how much attention everyone pays to the varing level of ability when their child has a diagnosable disability, but kids without that diagnoses get a lot more slack for what they can and can't do at a particular stage of development.
There are obvious reasons that kids with disabilities are being carefully tracked for their milestones but I kind of think kids without diagnosable differences would fair a lot better if they were attentively tracked. I have seen so many over the years who simply had yet to be diagnosed not getting the extra support they needed to achieve their potential. And many who are not diagnosable but clearly are not getting the support they need.
Nico has certainly been blessed with good health which is such a relief. Having a sick baby is so hard cause you feel so bad that you can't make them feel better.
One thing that also has surprised me with going to play groups and the walk is how many kids with D.S. do not seem to be as effected or have really strong facial characteristics of D.S. I think before I had this assumption that most people with D.S. were severely effected by it but that seems to not be as common as I thought. And there is much more variability in the degree kids are effected by it.
My perception of people with D.S. is so so so very different from knowing someone with it, this little lovable baby who seems to me just llike any other baby.
no subject
Date: 2007-10-21 03:30 pm (UTC)no subject
Date: 2007-10-21 05:32 pm (UTC)*claps hands*
no subject
Date: 2007-10-21 05:53 pm (UTC)"I am not what you think. I am wounded, I am aching, I am burdened. I am worried and afraid. I look like I have everything going my way, but I'm not what you think."
no subject
Date: 2007-10-21 05:57 pm (UTC)no subject
Date: 2007-10-21 06:50 pm (UTC)no subject
Date: 2007-10-21 07:21 pm (UTC)Yes, I know EXACTLY how that goes...
but it's true...These aspects of life might shock people who don't or haven't experienced it and we become aware of others' reactions to our own experiences...Even as we're dealing with the emotional impacts (and sometimes even still reeling from them), we still have to go on with life and so I agree with what you say:
Maybe its better just to talk as if this were normal.
Because it is normal...because it's life...in all it's glory...
(no subject)
From:no subject
Date: 2007-10-21 08:25 pm (UTC)K. [you guys are brave, all three of you]
no subject
Date: 2007-10-22 11:55 am (UTC)