Monday, March 27, 2006
sometimes I rhyme slow, sometimes I rhyme quick...
Hiya. How ya’ll (computer screen) doin?? Gude, I hope. Pardon my misspelling of the word good, I like to do the same thing with prolly and tonite. Hope it doesn’t bodda you too much, har har. Excuses, excuses, pork chops & apple sauce, all that gude stuff.
Anyway on to the business at hand. Well, as you can see, I’ve written less & less in this here space, and I really think it’s because I’ve had less and less concerns?? Or just the fact that reality is settling in so much that it is no longer a thing of which to think overly? Not sure. Still think about it of course, but, eh, you know, or you don’t, either way, it’s cool.
Well, we did come to a decision of sorts. We have decided, at least until we change our mind, which I don’t think we will, to not tell anyone about the fact that our unborn child has down syndrome. Screw it. Ha ha. No, seriously, but really. Our reasoning: we do not want people to see our child as a condition, but as a child. Yes, of course, after they meet her, interact with her, fall madly in love with her, which they must! Of course, then, we will inform them of the trisomy 21, but call us crazy, we just cannot stomach the idea of all our family having this gigantic preconceived notion of our future bundle of joy when and if this notion may not bear fruition and, well, I dunno, that’s what we’ve decided.
We even had this whole letter written up, telling the news, letting everybody know, and we thought, you know what, why we doing this? Our real inspiration was this online article that I found. It’s about this couple that found out post natally (after birth for you non latin majors) that their baby son had DS. Well, one side of inlaws was there, at the birth, so they knew right of the bat, but the other side of the family, they didn’t want to announce it to them until they’d been able to see their newborn son.
Ms. Lim Messina's family had been present at the birth and were aware of Evan's condition. But with Mr. Messina's family, they said nothing about Down syndrome until four months later, when they traveled to New Jersey for a family visit. They wanted the family to meet and play with Evan first. Only then, once they had held him in their arms, did they tell them that Evan has Down syndrome. The reaction, says Mr. Messina, was supportive.
I think this following quote really clinched it for us:
"I wouldn't send out a birth announcement saying that my son, the pre-diabetic, had been born, or that my son, who has a genetic predisposition to obesity, had been born," said Mr. Messina…
which makes perfect sense! Our daughter is a little baby, a beautiful girl, a young life that will blossom into whatever she chooses to do within this world, she is any number of a million different things, one of which is associated with the fact that she has trisomy 21 also known as down syndrome but she is not “down syndrome.” And like it or not, once people hear that thing about her, if they have not had a chance to meet her and experience her presence and get to know her without the shadow of the context, especially in light of social stigma and the popular misconceptions and archaic prevalent thinking in reference to this part of her, people will judge her by this and categorize her by this and not get to fully experience the richness that is HER, SHE a small little PERSON, who is unique and one in a billion and all those other good things that a proud father loves to say.
Okey doke, I’m done babbling at you (Hi wall!) for now. Tell me what you think? Or not. have a good one, nonetheless….
Anyway on to the business at hand. Well, as you can see, I’ve written less & less in this here space, and I really think it’s because I’ve had less and less concerns?? Or just the fact that reality is settling in so much that it is no longer a thing of which to think overly? Not sure. Still think about it of course, but, eh, you know, or you don’t, either way, it’s cool.
Well, we did come to a decision of sorts. We have decided, at least until we change our mind, which I don’t think we will, to not tell anyone about the fact that our unborn child has down syndrome. Screw it. Ha ha. No, seriously, but really. Our reasoning: we do not want people to see our child as a condition, but as a child. Yes, of course, after they meet her, interact with her, fall madly in love with her, which they must! Of course, then, we will inform them of the trisomy 21, but call us crazy, we just cannot stomach the idea of all our family having this gigantic preconceived notion of our future bundle of joy when and if this notion may not bear fruition and, well, I dunno, that’s what we’ve decided.
We even had this whole letter written up, telling the news, letting everybody know, and we thought, you know what, why we doing this? Our real inspiration was this online article that I found. It’s about this couple that found out post natally (after birth for you non latin majors) that their baby son had DS. Well, one side of inlaws was there, at the birth, so they knew right of the bat, but the other side of the family, they didn’t want to announce it to them until they’d been able to see their newborn son.
Ms. Lim Messina's family had been present at the birth and were aware of Evan's condition. But with Mr. Messina's family, they said nothing about Down syndrome until four months later, when they traveled to New Jersey for a family visit. They wanted the family to meet and play with Evan first. Only then, once they had held him in their arms, did they tell them that Evan has Down syndrome. The reaction, says Mr. Messina, was supportive.
I think this following quote really clinched it for us:
"I wouldn't send out a birth announcement saying that my son, the pre-diabetic, had been born, or that my son, who has a genetic predisposition to obesity, had been born," said Mr. Messina…
which makes perfect sense! Our daughter is a little baby, a beautiful girl, a young life that will blossom into whatever she chooses to do within this world, she is any number of a million different things, one of which is associated with the fact that she has trisomy 21 also known as down syndrome but she is not “down syndrome.” And like it or not, once people hear that thing about her, if they have not had a chance to meet her and experience her presence and get to know her without the shadow of the context, especially in light of social stigma and the popular misconceptions and archaic prevalent thinking in reference to this part of her, people will judge her by this and categorize her by this and not get to fully experience the richness that is HER, SHE a small little PERSON, who is unique and one in a billion and all those other good things that a proud father loves to say.
Okey doke, I’m done babbling at you (Hi wall!) for now. Tell me what you think? Or not. have a good one, nonetheless….
# posted by joe malone @ 5:30 PM 
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I'm trying to remember what we did. We didn't know Meg had DS until after she was born.
I do remember that when I was asked about my new baby and I mentioned the DS, people's faces would either freeze, or crumple and they would offer me their condolences, which really isn't what I wanted to hear. So I found I was continually having to make the point that what I had first and foremost, was a beautiful little girl.
I can't say for certain whether your approach is the right one or not. If it feels right to you then go for it. I do think it's good to stress to people about the fact that she's your daughter first and any "conditions" are a secondary consideration.
I do remember that when I was asked about my new baby and I mentioned the DS, people's faces would either freeze, or crumple and they would offer me their condolences, which really isn't what I wanted to hear. So I found I was continually having to make the point that what I had first and foremost, was a beautiful little girl.
I can't say for certain whether your approach is the right one or not. If it feels right to you then go for it. I do think it's good to stress to people about the fact that she's your daughter first and any "conditions" are a secondary consideration.
It is a hard decision to make on the when and how to tell "everyone" of your child's diagnosis.
For us we had an increase risk on the AFP. We had 3 level II 3/d ultrasounds which showed no markers so we declined the amnio. We knew there was a possibility she could still be born with Ds, but we didn't tell anyone. Now I wish we had shared this news with our parents to have given them time to prepare for the possibility, but we didn't say a thing.
When she was born I knew immdiately when I looked at her that she had Ds. The first thing I said when my mom got to the hospital and held her first grandchild for the first time was, "They think she has Ds". Needless to say she was shocked and I regret how I just blurted it out like that. I did pretty much the same thing with my dad on the phone and my best friend. Of course we didn't know anything "for sure" until her blood test came back almost 2 wks later, but I knew.
After that I emailed all my friends and family who lived out of state. With the friends that live close to me I never really said anything except to 2 of them; I figured word would just get around and people would know just by looking at her. I regret the way I handled that too because after awhile I thought people must think this is some big secret not to talk about it becaue I didn't bring it up myself. There were a lot of women all having babies the summer I had my daughter and I didn't feel like I should have to make an "announcement" about my daughter - no one else had to!
I do agree it's probably not something that needs to be included in the birth announcement though - that should be strictly for announcing the birth it shouldn't have to include any medical conditions.
Good luck with the rest of the pregnancy...and you're right...everyone should come to realize she is just your precious little girl first and foremost.
For us we had an increase risk on the AFP. We had 3 level II 3/d ultrasounds which showed no markers so we declined the amnio. We knew there was a possibility she could still be born with Ds, but we didn't tell anyone. Now I wish we had shared this news with our parents to have given them time to prepare for the possibility, but we didn't say a thing.
When she was born I knew immdiately when I looked at her that she had Ds. The first thing I said when my mom got to the hospital and held her first grandchild for the first time was, "They think she has Ds". Needless to say she was shocked and I regret how I just blurted it out like that. I did pretty much the same thing with my dad on the phone and my best friend. Of course we didn't know anything "for sure" until her blood test came back almost 2 wks later, but I knew.
After that I emailed all my friends and family who lived out of state. With the friends that live close to me I never really said anything except to 2 of them; I figured word would just get around and people would know just by looking at her. I regret the way I handled that too because after awhile I thought people must think this is some big secret not to talk about it becaue I didn't bring it up myself. There were a lot of women all having babies the summer I had my daughter and I didn't feel like I should have to make an "announcement" about my daughter - no one else had to!
I do agree it's probably not something that needs to be included in the birth announcement though - that should be strictly for announcing the birth it shouldn't have to include any medical conditions.
Good luck with the rest of the pregnancy...and you're right...everyone should come to realize she is just your precious little girl first and foremost.
thanks so much to you both for the well thought out responses....
we're still moving forward per "the plan," we sent everyone in the fam the pic of the baby, they all think she's beautiful (of course!!)
We both feel good about this course, like we owe it to her (our unborn child) to be judeged (at least at first) as just a little baby, no baggage attached.
we'll see what happens, I feel fairly confident(knock, knock) that we are doing the right thing.
we're still moving forward per "the plan," we sent everyone in the fam the pic of the baby, they all think she's beautiful (of course!!)
We both feel good about this course, like we owe it to her (our unborn child) to be judeged (at least at first) as just a little baby, no baggage attached.
we'll see what happens, I feel fairly confident(knock, knock) that we are doing the right thing.
Hi Joe,
I've been thinking a bit more about this, and wanted to say that while we, as parents, worry about how people will react, the biggest problem for those who hear about it is that they don't know how to react.
Some will offer their support, some will offer their condolences, but quite a few might not say anything, or even stay away quite simply because they don't know what to do.
It's simple fear of the unknown.
If you can let them know how they should react, then they will breathe a sigh of relief and follow your lead. Don't expect them to know what to do.
Obviously do your own version, but the kind of thing you might want to get across when you do tell people about the DS is:
"As you know, we have a beautiful little girl. Now, it turns out that she also has Down Syndrome (or Trisominy 21 - whichever you're most comfortable with), which means that as she grows up she might need a bit of extra help and support in some areas of her life. Now if I was in your position, I probably wouldn't know what to say, or how to react, so I'll just let you know that first of all you need to say "Congratulations Joe!" and "What a beautiful daughter you have there Joe! Can I give her a hug?"
It's all about reminding them that first and foremost you have a baby girl who has the same needs as any other baby girl. Then, if they want to know more about DS, then you can give them some info or point them to the appropriate websites.
I've been thinking a bit more about this, and wanted to say that while we, as parents, worry about how people will react, the biggest problem for those who hear about it is that they don't know how to react.
Some will offer their support, some will offer their condolences, but quite a few might not say anything, or even stay away quite simply because they don't know what to do.
It's simple fear of the unknown.
If you can let them know how they should react, then they will breathe a sigh of relief and follow your lead. Don't expect them to know what to do.
Obviously do your own version, but the kind of thing you might want to get across when you do tell people about the DS is:
"As you know, we have a beautiful little girl. Now, it turns out that she also has Down Syndrome (or Trisominy 21 - whichever you're most comfortable with), which means that as she grows up she might need a bit of extra help and support in some areas of her life. Now if I was in your position, I probably wouldn't know what to say, or how to react, so I'll just let you know that first of all you need to say "Congratulations Joe!" and "What a beautiful daughter you have there Joe! Can I give her a hug?"
It's all about reminding them that first and foremost you have a baby girl who has the same needs as any other baby girl. Then, if they want to know more about DS, then you can give them some info or point them to the appropriate websites.
thanks a lot for coming back to add some more knowledge, kim, much appreciated.
You make some really good points, and that's something my wife & I have talked about at length, reminding people that they don't HAVE to have a reaction, that we understand they may need time, and helping them form a reaction, if appropriate.
It makes it a little more difficult to know what to do, the fact that she's not even here yet. There is no child to hug, no little one to look into her eyes, no ability to make the emotional connection dependent on the child being right there (which she is, but she's still inside my wife...)
anyway, we're figuring it out, and I think we're still comfortable with our plan, and we'll let them know after they've been able to see her hold her love her, and plus, after we've been able to see her hold her love her be amazed by her ourselves, until then, putting any label besides "daughter" seems premature.
thanks again for taking the time to come back and type out your thoughts, much, much appreciated.
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You make some really good points, and that's something my wife & I have talked about at length, reminding people that they don't HAVE to have a reaction, that we understand they may need time, and helping them form a reaction, if appropriate.
It makes it a little more difficult to know what to do, the fact that she's not even here yet. There is no child to hug, no little one to look into her eyes, no ability to make the emotional connection dependent on the child being right there (which she is, but she's still inside my wife...)
anyway, we're figuring it out, and I think we're still comfortable with our plan, and we'll let them know after they've been able to see her hold her love her, and plus, after we've been able to see her hold her love her be amazed by her ourselves, until then, putting any label besides "daughter" seems premature.
thanks again for taking the time to come back and type out your thoughts, much, much appreciated.
# posted by 
: 5:53 PM
: 5:53 PM << Home
