Wishing you courage

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow'."
- Mary Anne Radmacher

Sunday, July 27, 2008

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.

1 comment:

debbie said...

I think that it would be so hard not having any answers. I applaud you for trying and hope one day you find some.