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

Wednesday, July 30, 2008

Contains good news!

Funny that I feel like the elephant in the room where 7 week old crying twins just entered (how did that wide stroller fit through the door???). Can everyone circling around the tiny ones tell that I'm the pariah who grew one of those "incompatible with life" things; bone and tissue resembling a human but on the inside very unlike these wiggling, sobbing babies who can eat and pee.

I would be making an exit from the building if I weren't waiting for my annual performance review. Is it going to be hard to present a glowing self review when pre-menstrual (I think anyway, *TMI* still waiting, still spotting, wondering if this is the start of skipping periods due to premature ovarian failure), and after viewing what I don't have?

Today marks a milestone in grieving though because I DO care about the things I've managed to accomplish this year at work along with being concerned about my lousy baby making skilz and my possibly waning fertility. Oh yeah, and my concerns with the chronic numbness that's settled into my extremities and the joint pain in my hands (gotta get tested for new autoimmune diseases again), and my limping marriage complete with a laid-off, depressed husband. I actually am eager to talk about what I've done this year and where I want to take my career!

Marriage stuff
A has been very depressed since receiving his lay off notice in April. He's working at a temporary position but I don't think he's going to relax until he gets a permanent position with pay comparable to before. In fact we can't do anything like have a baby or even get a puppy until he feels comfortable with his employment. In the mean time interacting with him is trying. He's distant and short tempered and he is getting very annoyed with the activities for us to do that I bring home from therapy. In general, I'm a basket case on a good day so dealing with deadbaby emotions and depressed A has had me convinced that divorce was just over the horizon. I've been asking A for weeks what he wants from our marriage or if he wants to stay married at all - no answer.
Last night, emboldened by a bottle of pinot grigio, I asked him to answer one multiple choice question regarding the future of our marriage:

Answer A) I assume that he wants to stay married and that I need to just patiently wait for his depression to lift

Answer B) I need to be concerned about him surprising me in the future with his decision about whether or not he wants to stay married

He said A!!!! I think this is as close to a renewal of vows that I'm going to get!

Then I think I slurred something about in that case I want a birthday present and an anniversary present and I think he said "ok". BTW, the lack of presents is my fault since I decided to ignore my birthday this year and we were busy on our anniversary.

So 15 minutes ago = almost gasping from feeling so freakish around living babies
Now = excited about job and no longer worrying about my marriage

Back to work!

Tuesday, July 29, 2008

Real quick

Last night I dreamt of pushing Toren as a toddler in a stroller through the zoo. We were having an awesome day! Right before waking up I was reading lines of poetry about how horrible bilateral renal agenesis is; how horrible agenesis of the stomach is; how horrible agenesis of the bladder is. Completely horrible poetry but the sentiment is true. I really really really hate it when major organs just don't develop!

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.

Friday, July 18, 2008

The garden today

In the beginning this area was full of weeds. Today it looks like this.
It's not very impressive since the plants have a lot of growing to do. Everything is about the same height right now but later some plants will be taller than others. I planted a bunch of annuals to provide color and fill up space while the perennials are still small. As I find pretty outdoor decorations those will be added.

Four butterflies visited the garden while I was outside. Here is a little brown one among the impatiens.

Here's one of my gardening helpers viewing a large butterfly.

And a better picture of the butterfly.

Since the last post I have been practicing with Jizo with sitting practice versus pitching practice. That's a bit more appropriate...

Since this is turning into a photo blog, here is a photo of my indoor Jizo statue, in case anyone is interested. The statue stands before an antique fireplace screen which I think makes Jizo, who is most often portrayed as very simple in dress and appearance, look really fancy!

Monday, July 14, 2008

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.

Wednesday, July 9, 2008

Summer activities have kept me too busy to write; I've a mental list though of things to discuss - all GOOD things, making progress through the grief mire kinds of things. I wanted to tell you about how well the garden is doing and post some pictures of it, and tell you about my resolve to return to the gym and do tons of yoga. Now that company is gone and the house is still the "happy" phase has taken a hiatus. Thanks for visiting, it was nice while it lasted.

Depressed musings begin here, feel free to stop reading at this point.

I have banned myself from the garden. A few days ago I got unreasonably upset by snarky comments addressed to me via LJ and retreated to the garden to calm down. I saw a butterfly flitting around the impatiens. It was the first one I've seen and I didn't expect to see any this year due to the spray I used during the Japanese Beetle saga (perhaps more battling the beetles later since that is actually useful information). I just stood there, unmoving, mouth agape. It was joined by another butterfly, both small and white. They explored the impatiens, then my gardenias, then the neighbors yard, back to the impatiens ...

Most of the planting is done in the garden, just a few ground cover plants and annuals to place. Otherwise the work of creating the garden is almost done - next is maintenance and providing an environment that encourages growth. After weeks of work one would, should, be happy with the progress, especially with seeing butterflies, since that is a major point of the garden.

It's odd then how much I hate the garden sometimes - my sanctuary, my prayer, my distraction. A few hours after seeing the butterflies I had a vision where I leveled the garden. Plants ripped out, cut apart, stomped into a pulp. Trellis twisted, glass centerpiece shattered. Rocks screamed at then thrown out of the yard. I can't face the garden right now. I don't trust myself to nurture it. Luckily this area is getting rain this week and hopefully by the time I need to water again I'll be eager to look for new growth and such.

The Jizo statue arrived last week but it's head had broken off during transit. It's this statue. A replacement statue is expected to arrive next week. I wanted to do something special to welcome Jizo to the garden...not sure what to do though.

Lame, sad stuff
The snarky comment that upset me was because I didn't talk to someone in the grocery store. Hurt her feelings, obviously retaliation is a must by telling all of our mutual friends how much I suck. Whatever... this kind of stuff doesn't bother me too much, however it made me realize that I am in AnnaLand a lot.

The density of the fog I've been living in has me shocked, horrified, ashamed. Through the haze, introductions, faces, names are obscured and quickly forgotten. I don't look at people in grocery stores, I don't care who may be there.

Most of the time now I hold it together - polite, happy appearance, well aware that this is what is expected of me while in public and at home with my husband. I've been crying for the past two nights though. Little things set me off. The down mood began before I even checked the calendar to see what was going on last year... wow, suddenly I'm having trouble even writing about this ... about a year ago my son was implanting. The pregnancy was beginning. It seems impossible that it was that long ago. Almost an entire year out of my life has been wasted, spent in sorrow, barely getting through the days.

This has gotten too sad for me now. More later.