Butterflies visit the garden everyday now. Today two swallowtails (I think, I still need to learn to identify different butterflies) and two little white butterflies flew around me, surrounding me for a second, as I inspected the garden. Most of the perennials are doing well and getting larger. Japanese beetles dining on the leaves of some plants is still an issue but it's getting better. Half of the impatiens are large and pretty, half are wilty and sad looking.

Here's a fuzzy photo of one of the white butterflies. Some chewed up leaves are nicely in focus, stupid beetles.



The clematis I thought I had killed has resurrected and looks so pretty. The clematis that I got this year and was doing so well for a while is now all brown and crispy; perhaps it will come back next year.
















The new Jizo statue arrived safe and sound last week. It's still in the house hanging out with the other one. I'm making up a sort of "welcome to the garden" ceremony, I'll probably place the statue alone but might invite some friends over for a party later and show them the garden. I have a very long set of prayer flags to hang in some trees opposite of the garden and then I thought I'd make a bunch of origami butterflies to hang around the garden. I imagined myself lovingly, contentedly and carefully folding beautiful origami paper into delicate butterflies. HA! Origami is much more difficult than I anticipated! The introduction to a book of origami instructions mentioned the concentration development that occurs with the practice of origami. I am pathetically short on concentration and patience lately. Folded and refolded pieces of colorful origami paper are strew about my living room, and there is not one completed butterfly! My plan is to find a new set of butterfly making instructions and maybe convince some friends to help me.


One of the last questions for the National Birth Defects Prevention Study interview was "What do you think causes birth defects?" Not my baby's defect in particular, birth defects in general. I both very much like and very much dislike that question. I like it because I think it's a good idea to ask study participants about what they think risk factors or health outcomes are; answers could help with generating hypotheses (in the instance where the causes are unknown, like some birth defects) and I think people like having a chance to talk about how they think they are affected. I answered the question very generally: genetics, environmental exposures, maternal health factors (perhaps I mentioned infection specifically), but I wish I had also said something about my baby's condition.

No doctor has given me any hint of why Toren never made kidneys. There is no family history of renal agenesis in our families; the pathology report found the baby to be chromosomally normal. I was told repeatedly that I did not do anything to cause it, but I think there has to be some explanation for the agenesis. Was it some medication I used before I knew I was pregnant? Did the asymptomatic urinary tract infection I was diagnosed with at the first prenatal visit mess up his development? What about the velamentous cord insertion and all of the bleeding from that; did he just not get enough blood flow to develop all of his organs?

Last night with the house to myself, armed with a glass of nice wine I set out to review the literature on bilateral renal agenesis. All along my fear has been that there are studies out there identifying the risk factors, and then I would feel guilty for unknowingly causing my son to not be compatible with life. Instead, beyond a genetic component, I again found no explanation. I'm waiting for one more article.

Having no answer is frustrating. At least if I knew some risk factors I could avoid those things the next time I attempted pregnancy. As it is, beyond stopping medications earlier, I know of nothing to do next time to ensure a healthy pregnancy. Of course a pregnancy which results in a live baby that you take home cannot be promised, no matter how good you are, and I hate that right now.

Still not gardening

With my husband out of town last weekend my nightly, private cries continued. By day I stumbled through social commitments, puffy eyed, all the time one thoughtless comment away from sobbing. That sounds like I didn't have a fun weekend but there were really fun moments and really sad moments. Stupid emotional roller coaster.

A grumpy rant
Two expecting friends have expressed, in my presence, how unnecessary they consider prenatal screening. The perceived (and INCORRECT) dangers, the high rate of false positives, and most gut wrenching, the fact that a poor prenatal diagnosis wouldn't matter to them.

"It doesn't matter if the baby has Down's".

Doesn't matter!!??

Regardless of issues of pregnancy termination I'd say few things matter as much as your baby having Down Syndrome or any other serious, life altering/threatening condition (Down Syndrome just seems to be the condition they are most familiar with, not knowing of other things that can go wrong).

"Oversensitive" may be an understatement for my feelings lately but I take great offense to opinions against prenatal screening said to me by people who know my baby was determined to be incompatible with life while in utero. But not because I'm so pro prenatal screening, it is a personal choice. But it feels like they are saying that not only are they immune to a poor prenatal diagnosis (unlike those poor saps whose babies are doomed, people for whom parenthood is just "not meant to be"), but also that they love their babies so much they could/would never interrupt their pregnancies. Seriously, do you not remember visiting me in the hospital last fall? When I went in pregnant and emerged 4 days later, a depressed, unstable wreck, with an empty uterus?

My wish is that all pregnancies end with a healthy baby and I'm so happy and relieved that my pregnant friends have healthy pregnancies so far. But the lack of empathy is surprising since they are only one bad ultrasound away from joining me in stunned sorrow. I think opinions against prenatal testing is a topic that should just not be discussed with me.

I cheered myself up with superhero-hood daydreams. The cause: generation of compassion in expectant parents toward deadbaby mama's, in particular those whose babies received a lousy prenatal diagnosis. Weapon of choice: Jizo statue head. Outfit: none - not as in naked (especially with the pregnancy weight gain I haven't bothered to lose), rather no costume changes are needed; the compassion smack down can occur in whatever I happen to be wearing. Like in this tea party outfit.

Of course the Jizo head thwack will be metaphorical to avoid assault charges, and the head is rather heavy to carry around constantly. I imagine this will involve an educational component as I correct misconceptions and depending on my mood a heavy guilt trip with tears.

On a different note, a happier note in an odd way, today I was interviewed for the National Birth Defects Prevention Study. I collected all of my pregnancy records and spent an hour and a half on the phone for the interview. I'm so relieved that somebody cares about my son and my family's loss. He is being counted. There are 9 states included in the study and I'm not sure if all pregnancies and infants with diagnosed birth defects in these states are included or if a sample is selected. I was contacted by them and I don't know if it's possible to be included in the study if they have not contacted you.