Happy World Down Syndrome Day everyone!

"World Down Syndrome Day is celebrated on the 21st day of the third month of year to symbolize a third copy of the 21st chromosome in Down syndrome. This year is especially exciting as is it the first year that the date is officially recognized by the United Nations! Join the global celebration and Do Something Extra to honor those with an extra 21st chromosome this World Down Syndrome Day." ndss.org

NDSS has a great site with lots of reliable info. Check it out when you have the time - it was really helpful to us after David's diagnosis.

The colors for Down syndrome awareness are blue and yellow, and the symbol is a butterfly:

Vacation Photos

(David checking out the lemurs at the Natural Science Center in Greensboro, NC)

(This is the closest I have ever been to a tiger. Even with the glass, we were a little nervous)

I’m still reading lots of blogs and other sites about prenatal testing and Down syndrome, and Matt has joined me on several. I still haven’t sorted everything out, not in my own head and certainly not so that I can write conclusively about it.

I have started wondering what tests I would agree to have done, if Matt and I have another baby. The standard blood tests, the triple- and quad screen, only predict your risk for Down syndrome; previously you have had to had an invasive/risky amnio or CVS for a definitive diagnosis. OBTW: the triple or quad screen or whatever I had for David – completely normal results, no risk indicated. The new test that I’ve been blogging about is supposed to offer a definitive diagnosis with just blood work from mom. Would I want that? Not particularly. Our OB told us she was certain David had Down syndrome because of several things she saw on the ultrasound, and I guess that’s the answer to the question for me – I needed to know what she saw (heart defect and problem with blood flow in the umbilical cord), but I don’t think any blood test would have provided any additional critical knowledge. The doc went on the assumption that he had Down syndrome and I did too – knowing “for sure” wouldn’t have done much for us.

I’m sure any future pregnancy would be considered high-risk, at least initially. I’m sure I’ll have to have another fetal echocardiogram and several detailed ultrasounds, for the same purpose – to make sure there’s nothing that would affect plans to deliver at a certain hospital, to mentally plan for heart surgery, etc. And those’ll tell me what I need to know – that there is or is not a condition that puts the baby’s survival at risk. Blood test, schmud test.

If the (theoretical) baby is delivered just fine, will they still want to do a chromosome analysis? Could we refuse it? Why would we do that? I don’t know, just running through the million or so possibilities.

I will end with a vignette from Law & Order, which I’m sure will make Matt giggle (I mean, I already told him about the episode, but my L&O addiction is the subject of a fair amount of teasing, and the fact that I’m writing about it will make him smile). The actual outcome of the case (a bomb at a doctor’s office) was pretty farfetched (shocking, I know), but a slight side-track was: the doc in question did genetic research and testing, and the cops found out he was being sued by a couple who received an amniocentesis result that was positive for Down syndrome, had an abortion, and then found out the results were wrong. In the ensuing interviews, the couple revealed they had been trying to have a baby for 7 years and the wife had 2 miscarriages. Jesse Martin’s character, Ed Green, was giving them a hard time about the abortion, and he said, “You know, life’s not bad for Down’s kids these days – maybe you should have played the hand you were dealt!” We learn later that Ed once got a girlfriend pregnant and she had an abortion after a positive amnio for Down syndrome, and he didn’t want her to do it.

So, sorry to quote a TV show, but that is a good summary for me – life’s not bad for [kids with Down syndrome] these days. It’s really not.

Spoiler alert – Matt’s sermon this Wednesday will discuss this topic to an extent (theme for Lent – human limitation)

So it turned out the actual issue was the doctor claimed to have developed a prenatal screening test for homosexuality. Again, the way in which this played out was pretty ridiculous, but it is the slippery-slope thing. Who’s up next for extermination? Would crazy-religious people (which I know are a small portion of the pro-life movement) feel any differently about ridding the world of gay people?

See “Rutabagas” for further discussion of various measurements of human worth. I think that’s where I may shift my focus to. A pretty reasonable-sounding woman commented on an article that (a) she has a child with Down syndrome; if she got pregnant again she would want to know for sure just to prepare herself (b) the test is not required, it’s optional, and she does not foresee a future in which either the test or abortion would be required (c) the test is information, which is neutral. It’s what doctors and pregnant women do with the information, and (d) evidently plenty of women are willing to incur the (small) risk of miscarriage from an amnio to find out for sure – why not eradicate the risk?

A much larger discussion of fear and defense mechanisms and value and worth and whatnot will come, hopefully in small pieces. But for tonight, it’s 11:10 and I’m kinda tired.

this is making Joanna feel very ... domestic, or something

Joanna's new Pinterest (account, or board, or whatever):

https://pinterest.com/syanddaveysmom/

There is not a lot there at the moment, because I just started it last night. But there is a lot of Down syndrome (and general parenting) stuff available, so stay tuned ...

Bad experience my first log-on: on the opening page or whatever, when they are giving you suggestions of recently pinned or most popular, there was an image, a sketch of a little girl who appears to be deep in thought. The caption said something like, "They think because I'm quiet that means I'm shy; what I'm really doing is observing and judging everyone and finding them to be complete f***ing retards." Something like that. And the f*** was spelled out, FYI.

Great.

Not to be a goodie-two-shoes and new-to-Pinterest nerd, but it says right there on the startup page, not to be mean. Perhaps I should bring this to their attention - do people also get to post something that says, complete f-ing faggot or complete f-ing _____ insert whatever other slur?

Also FYI: anyone who uses Pinterest feel free to follow me - I decided a long time ago not to be facebook friends with anyone at any of the churches we've served (keeping a tiny part of life completely separate), but I would love to share some things with you. There will be a lot of Down syndrome info and links, but I imagine there'll also be some recipes and other parenting things. Maybe even some arts and crafts.

News in Brief

David saw his pediatric endocrinologist this week. She's nice and knowledgeable and all, but I'm glad his next appointment is not for 6 months. It's an hour and a half drive, and he always has to get his blood drawn ahead of time. This is not a complaint, because the (tedium?) of the visits is an indicator that he is doing well. David's hypothyroidism is very mild, his medication dosage is low and is apparently quite effective, and there are no other major health concerns at the moment. So all that is excellent, so no complaints whatsoever. But maybe next time if all the lab work is normal, we can do this by phone?? Or perhaps Matt can take him, I keep telling him the (young, female) doctor is quite attractive :)

Developmentally, we are working on changing David over from his bottle to drinking milk out of a (regular, not sippy) cup. We started on the cup transition with water maybe 6 weeks ago, at the behest of his speech therapist (speech and OT do their regular stuff with David, but they are both also feeding resources for infants/babies). He actually did quite well with managing the cup himself with the water, but hey, water is free and doesn't make much of a mess. Since we started doing milk in the cup, we are holding it all the time, so far. The first session, while the speech therapist was here, was awful - David cried the entire time. And by that I mean, the entire time, like an hour. The ST kept saying, he can do this (he is developmentally/physically capable), it's only a matter of how much you guys can deal with. Fortunately he only cried for the first couple of days, and we are pleased with his progress. We're still holding the cup for him, but he's much more agreeable. But it takes forever. I guess we shouldn't be too surprised; after all Simon is almost 5 and has no developmental issues, and it usually takes him a really long time to drink from a regular cup, if he's not really thirsty. Sometimes a meal takes about 45 minutes, so we are still doing a bottle if we are in a hurry or have an appointment. and his last bottle at night is still a bottle, every night - I imagine that'll be the last one to go, and I'm in no hurry. But it is a great step toward being a big guy!

Candidate

A couple things:

1. Some scary moments with David's breathing the other night; he's fine but I was really close to calling 911, at 2:30 in the morning. Fortunately I was able to remain calm and follow all these various steps we're supposed to try. He finally started sounding better and was able to get back to sleep; we followed up with the pediatrician the next day and he's okay.

2. Two developmental things: (a) David loves playing with Simon's Megablox, but he has (to date) not been very good at squishing down the blocks once he stacks them, so the towers are not too stable. But now, he's doing it all the time, and building some pretty great towers. (b) Today Matt and I watched him as he was standing up, holding onto a kitchen chair. He reached down to pick up a toy, and instead of plopping down on his butt as usual, he continued to hold onto the chair with one hand while he reached down with the other. ... I know neither of these seems huge, and they may not be, but they are new, and we're all quite impressed.

Mr. David has taught us a lot about the various subtle sub-steps that go into everything that most of us just do, and to appreciate every little bit of progress along the way.

3. I've gone to several out-of-town conferences lately, to get continuing education credits for my social work license. It's nice to meet folks that do not know I am the wife of a pastor, or the mother of a kid with Down syndrome. It's nice (a) because it means I'm getting out of the house and meeting other humans, and (b) it's almost a little game now, timing when I choose to make either or both of these announcements. It seems that either of these factors makes me a candidate for sainthood in some people's minds, and when you combine the two, look out - there is this certain look folks get in their eyes, a mixture of "awwwww" and some sort of ... combination of whatever they think those things mean, whatever beliefs/stereotypes/experience they have with each one. The notion that "Down's children are always so sweet" (please do not ever refer to my child as a "Down's child") is definitely the front-runner, but pastor's-wife is a strong contender.

People are funny. They're also generally very nice and sweet and wonderful, so I shouldn't poke fun, but it really does happen almost every single time. You could try it too – it doesn’t have to be true, you just have to say it.

(Yes, it’s the little things. I need some way to amuse myself)

A very humbling reminder that all this prenatal testing / pregnancy termination stuff is complex, a difficult (and private/individual) decision, and heartbreaking:

http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html

In re-reading the Rutabaga entry, I'm concerned that I may have come across as not only callous myself (to anyone who has faced this decision), but that I also portrayed the decision to terminate a pregnancy after a prenatal diagnosis of Down syndrome, as one that is made callously and easily by parents who are really shallow and flippantly decide they can't handle a child with special health & developmental needs. I hope I made it clear in my two disclaimers that's not the way I feel, but ...