Trisomymommy

Road Map

I know I'm way behind the times, but I finally did read Jennifer's Roadmap to Holland.  Wow.  What struck me most about it was just how remarkably vivid it was.  My own memory of those early days after B was born is pretty hazy, especially of her (mere) four days in the NICU, but Jennifer captured every nuanced emotional detail, and I was transfixed.  This experience is so emotionally complex and I found it almost shocking to see my own private thoughts and emotions expressed by someone else, much more vividly and eloquently than I could have expressed them myself.  Jennifer, what have you been doing inside my head?  There is a moment when she describes reading the twins' chart in the NICU.  She hadn't had enough breast milk, so Avery had been given formula, and she sees the minuses marking all of the times that she wasn't present.  This was the most compelling description I've ever seen of that desperate not-enough feeling.  I got teary reading it as I remembered how I felt when I didn't have enough milk, which, looking back, was a stand in for the powerlessness I felt in the face of the diagnosis.  I had been overwhelmed with that "not-enough" feeling even though I didn't have another child miles away and another premature infant to care for!  I also remember how desperately I wanted to be holding B in the NICU while also wanting to get the hell out of there as fast as possible.  I had forgotten the tension of that, but Jennifer nailed it perfectly.  And that ubiquitous Babies with Down Syndrome book!  So disheartening. 

Frankly, I'm not a huge fan of the Welcome to Holland thing.  It's nice and all, but it all seems too tidy to me.  Or maybe it's just that I received so many copies of it when B was born that it quickly came to feel clichéd.  Or maybe I just resisted the pressure to feel comforted by it because I'm ornery that way. Whatever.  I love that Road Map to Holland is not so blithe.  Although it is painfully raw at times, I think that as a new mom, I would have taken more comfort in it than in its namesake.

Okay, I'm in

I'm always late.

I need inspiration to blog more often, so I've decided to join the blogapalooza that Tricia got started. 

And besides, I want the wellies!!!!

A Letter

In other news, I am still pregnant.  That fun second trimester libido has long since been trumped by heartburn, backaches, and awkward bulkiness, but all told I don’t feel too bad.  My follow-up ultrasound showed no problems, so we are released from worrying about anything in particular and can go back to the general, diffuse worrying at which I excel.  Actually, I’m keeping it together fairly well right now.  Who knew that getting kicked in the gut would be such a constant source of reassurance? 

In still other news, did anyone catch this article in the NY Times Science section? 

There are many issues here that one could complain about, but in my letter to the editor I decided to focus on their failure to mention any positive reasons for refusing amniocentesis.  In the process, I essentially accused them of racism.  Now I kind of regret this move because race is tangential to the main point and I might be rightfully accused of crying racism for the sake of controversy.  But it’s done, sent off in the heat of the moment. I doubt they will print my letter, so I’ll just give it to you here.

Jan Hoffman’s article on genetic counseling in poor, minority populations describes an expecting Mexican couple who decline amniocentesis after receiving a positive screening test for Down syndrome.  Hoffman wonders if they understood the information; if they were scared of the needle; if they were scared by the possibility that the amnio would cause a miscarriage; or if they did “just not want their dreams of a healthy baby punctured months before the due date.”  Hoffman fails to consider another possibility: that this couple fully understood the test and its risks, but also knew that they would treasure their baby even if that baby has Down syndrome, and so they refused the test.   Is it because they are Mexican that their choice is presumed to be driven only by ignorance, fear, or denial?  Or is it because, though the article is about balanced, non-directive counseling, the Times takes a dim view of anyone who declines invasive prenatal testing?

Love

Click it.

Ramble

I am approaching the end of the first trimester with no sign of impending disaster.  My previous losses were all within the first 8 weeks, so having made it to 11 is an accomplishment. 

I'll go way out on a limb here and reveal that I want this next kid to have the normal number of chromosomes.  I gather that's a common desire among the pregnant set, and it turns out that loving someone with an extra chromosome does not eliminate it.  Still, it seems charged to admit it.  Will people think I don't love my kid?  Will someone who is contemplating abortion because of a DS diagnosis look at my case and conclude that if I don't want a second kid with DS, having one must be just as bad as her worst fears?   Is it my job as an advocate to try to convince people that Down syndrome is so unproblematic that I don't mind in the slightest if all of my kids have it?  Elsewhere I have written about how Miss B is a gift that has enriched my life -- does this make me a hypocrite?

I'm not even able to articulate why I feel this way.  I can justify it in terms of long-term resources.  I want to have some typical kids who might look out for B when we're unable to do it, and I don't know how we'll afford to take care of more than one adult dependent over the long haul.  Those are important practical considerations, but they are not the real issue.  I just want the experience of raising a typical kid.  It's such a reasonable thing to want, and yet I feel defensive about it.

Of course, we cannot have all things to please us (Gillian Welch song now stuck in my head).  It doesn't really matter what I want.  What matters is what I'm willing to do if I don't get my way.   Could I have an abortion?   It would be the practical thing to do, and yet the possibility makes me recoil with disgust, and the further along I get the more revolting that option becomes.  Could I give a child up for adoption?   This is hard to fathom.   Aside: Interesting that there would probably be more societal support for abortion than for adoption.  Maybe our culture feels that if you end up pregnant with a kid who has a chromosomal problem, it's your job to either eliminate or parent that kid, but foisting the kid on someone else is selfish or irresponsible.  If that interpretation is accurate, it shows just how little value is placed on these kids.  When the kid is typical, are birth mothers who give them up viewed so negatively, or are they praised for taking the moral high ground?  End of Aside.  I think it's likely that even if there is a problem, I will embrace the next kid just as I did the first one.  The best predictor of future behavior is past behavior, right?  If so, then there is no point to doing any prenatal testing.   

But I have to know this time.   

beIntelligent

Thanks for your advice on the toys.  Actually, we don't need any more toys.  I'm not sure why I thought we did.  Our OT had recommended that we get some sort of walking toy and I guess I fixated on that, but of course she didn't mean that we need such a thing right now.  I just had the shopping itch and these days I scratch that itch by buying things for Miss B rather than for myself.   

Over the weekend I discovered that an urge to buy new toys can be quickly cured by stepping into a big toy store, which immediately makes me want to go home and take a nap.  First I should explain that I was already in a bad mood.  I woke up premenstrually irritable and I've learned that when I get that way, the best thing I can do is go out and do something without T because otherwise I will snap at him for no good reason. (The toilet paper goes on this way.  Every month we have this conversation, but you never pay attention!) So that was one reason that I decided to do a bunch of errands, including toy shopping.  Also, we tried out B's new glasses and it didn't go very well.  She immediately swiped them off of her face, I put them back on, she swiped them off, back and forth until I gave up.  I was already feeling sad that she needed them, and then having to force them on her when she clearly hated them only made me feel worse.  So somehow I ended up feeling irritable and sad and headed into consumeristic hell.

And there I was bombarded with the message that I should do everything possible to make my kid smart. 

There was the "The V.Smile Baby Infant Development System" some sort of video game which includes "Baby Smartridges" and purports to provide "a fun and enriching way for parents to connect with their baby through an interactive approach to learning about colors, shapes, animals, sign language and more!"  (Who would dream of connecting with their baby, or even interacting, without a system?)

Then there was the "Smartville" line of toys.  "Next stop Smartville!  This play set fuels a child's imagination with interactive Smart Parts, including 28 brainy characters that talk and teach when they are placed in fun, hot spots throughout the station."

And then of course we have The Baby Einstein line (our hero!), the Baby Genius line, the Baby Mozart line, and my favorite cd by various artists: 

My reaction to all of this is complicated.  On the one hand, my kid lost the IQ lottery, which is rather depressing.  Also, when I am reminded of how much value is placed on intelligence, it upsets me to think that people may not appreciate my B.  But there’s something else in my reaction that is hard to pin down, something more positive and maybe a little self-righteous.  In some small way, I feel liberated from the pressure to produce the perfect kid.  I also suspect that I’m better at appreciating other qualities besides intelligence.  Like joyfulness.

The T r U website produces 576 hits for learn, but only 231 hits for fun.

A friend

I'm swamped right now and the B is sick (again) so I won't be online too much this week.  I'm just popping in here to share this one bit of anecdata (a Cate coinage?).

I went to a conference this weekend and afterwards I was having dinner with a large group of people including some old friends and some strangers.  At one point I was telling a friend that I was angry because earlier this guy H had pretended that he didn't know I'd had a baby since he'd seen me last.  We had been standing in a small group and someone else had congratulated me and asked how B was doing and then H pulls out the fake surprised, "Oh? You had a baby? Congratulations!"  It was bullshit.  I know that he knew the whole story.  Anyway, at dinner I was telling my friend C about this and we were sitting with this very sweet young guy (VSYG) who didn't really know anyone there and was left out of too much conversation, so I decided to give him some context.  I said in the offhand way that I’m close to mastering, "I had a baby last year and she has Down syndrome, and that's why H had avoided the subject."  At this point, VSYG says, "Oh really? I have a friend who has Down syndrome." 

I’d had two glasses of wine and I’d been talking a lot, but at this I went quiet.  I savored that line.  It tasted better than the wild mushroom ravioli with grilled heirloom tomatoes, light cream sauce and balsamic vinegar that we were enjoying.  It's been almost a year since Miss B was born, and I've heard many different reactions to her diagnosis, but this was the first time I'd heard this.  I have a friend who has Down syndrome.  I started asking questions and this is what he told me.  The friend is an undergrad who will graduate this year from a liberal arts college.  He has a great sense of humor.  He used to live in the dorms but now shares an apartment with a few friends.  I asked about what kind of supports were available for him and VSYG says, get this, I love this part, he says, "Well, I think his parents support him financially."  That's not what I meant by the question, and that's why I loved his response.  He didn't even know what I was getting at and he gave me a response that describes about 90% of liberal arts college students.  When I pressed the question a little more he said the guy had struggled with math but otherwise seemed to do ok.  I asked if people noticed that he had it and treated him differently because of it and how did he handle that and he said that some people didn't notice, others did and that he thought his friend knew when he was being treated differently and usually just ignored it.  He said that his friend was a great guy and the DS just wasn't a big deal.  He stressed again how witty this guy was.

So, what to take away from this conversation?  It is not that I just heard an example of someone with DS who is doing really well. I’ve heard such examples before. What struck me was that while H (in his 50’s) could hardly bring himself to acknowledge her birth, VSYG (early 20’s) thought the diagnosis was utterly mundane.  He has a friend who has Down syndrome.

What to say?

When Miss B was born, I had many awkward conversations.  My mom went silent for a minute, which was hard to interpret over the phone.  Then I realized that she was crying.  One friend (also crying) said "I'm sorry" and then immediately corrected herself.  Both reactions seemed reasonable to me in the context of these close relationships.  I mean, who are we kidding?  I was sorry too and they knew it.  Both people were able to celebrate Miss B's birth without denying that her diagnosis was bad news to me, and I didn't fault them for their mixed reactions.  When more distant friends expressed sympathy, or worse, pity, it pissed me off.  Still, I did cut people a lot of slack.  The news was just so very complicated. They didn't know what to say and neither did I.

Somebody out there is getting the news that their sister's / daughter's / friend's/ colleague's new baby has DS.  Now they are googling "baby born with Down syndrome what should I say."  Hi and welcome to my blog.  You know, looking up the answers on the internet is cheating.  That said, maybe we can help you think it through.

Ok, I'll start.  I appreciated the gifts (except the Baby Einstein toys -- that stung a bit).  I especially liked the hand made ones and the personalized ones, such as this gorgeous blanket with her name in huge letters.  These gifts made me feel like the world was welcoming to my B. 

I appreciated when people commented on something besides the diagnosis.  What gorgeous hair!  Look at those eyes!  Can I hold her?

I did not take comfort in the more religious or spiritual responses, although I'm sure some people do.  I do not believe that God created this special angel and then hand selected me to be her mother because I am especially worthy of the job. (Too self-serving.)      

I did not like hearing that "they" are so sweet, or any such blanket generalization, but I appreciated positive comments about individuals with DS.  A retired elementary school teacher said, "I taught some kids with Down syndrome and they were great kids."  That was fine.  Early on I did not like hearing about someone you know with DS who loads groceries or does some other menial job.  My favorite comment was, "I have four grown sons, and the one with Down syndrome is not the one who has caused us the most trouble.  You are going to have so much fun with her." 

Don't bother sending Welcome to Holland.  Trust me, they've seen it.  Many, many times.

Don't say you're sorry, even if you are.

Anyone have additional advice/examples for our googler?  What was the worst/best response you got?

Busy

I have been busy.  Seriously.  Swamped.  I've been so strapped for time that it has been hard to justify spending what little time I have on the blog.  It's going to be this way for the next few weeks, and then I hope things will calm down a bit and I'll be able to update here more often.  Miss B has been struggling a bit with sinus and respiratory issues, but otherwise she is great. 

In the meantime, check out Innisfree Village.  Cost is a problem, but maybe we could use it as a model and find ways to cut costs.  Maybe by having more parental/familial involvement.  I don't know.

Strive U

NPR just did an interesting story on Strive U, a college-like program for young adults with developmental disabilities.

Here's the stoy: http://www.npr.org/templates/story/story.php?storyId=6129770