9-5

So, today was my first day back at work. Not much to report. It wasn't terrible, felt pretty okay, actually. Lots of support from those closest to me, no real acknowledgement that anything had happened from everyone else. Amazing V is dealing with all of my paperwork to straighten out the past two months, so I don't have to explain the whole story, which is incredibly helpful. Today was a big milestone. I survived it, which is good enough for me.

Oh, and Scott says I need to post more pictures. So here's one of my little monkey--notice that his arm is in a rare, relaxed position, almost straight!

What She Said

Aliza did a beautiful job right here of saying exactly how I feel.

Support of Jumbo Proportions

Ms. Shrink today said something very obvious, but something I needed to hear. Basically, that people's actions, or inaction, aren't necessarily what they're feeling. Meaning that those we haven't heard from, at all, might very well be sad for us, and that I shouldn't automatically conclude that their inability to be outwardly supportive means they're not.

True. But it got me thinking about the people in our lives who have been amazingly supportive, from the second Cayden was born. This is what I'm focusing on, and it feels amazing. In 'An Exact Replica of a Figment of My Imagination', the author talks about needing everyone in a disaster. And it's true. You need everyone around you when the worst possible thing happens.

We've had friends cry alongside us. We've received the most beautiful cards anyone could hope (not) to receive. We've had meals delivered. Our phones have rung often and always at the right times. We've had visitors from near and far, and I mean 10 hour, two connecting flights far. We've heard from junior high classmates through grad school, from family, from neighbors, from friends of relatives, from colleagues, former colleagues, new friends, and so many more. We have one amazing, incredible (insert any similar word and it fits here) friend who literally J.umped off a bus to be with us the night Cayden was born, and any night since that we've needed her. This crappy, horrible twist of fate I would wish on no one has made me realize that we are surrounded by a support system that I would wish for anyone.

Ooh Child

One morning a few weeks ago as I was cleaning to XM radio via Directv, the song "Ooh Child" came on. It was a version I hadn't heard before, and I was completely captivated. I immediately went to see who was singing it (Beth Orton, a live version is at www.youtube.com/watch?v=oQvHc2M-2g0) and proceeded to dowload it from itunes that afternoon. I listen to it quite often and most of the time, it fits me perfectly. It's a melancholy song, yet the lyrics are hopeful. It captures the hope that I want to feel, even on days I don't, and acknowledges my deep sadness at the same time. Sometimes I can't listen to the lyrics, and try only to feel the music, times when I feel like things won't get easier or brighter, and I decide it's a bunch of bullshit. But I can't bear to ignore the lyrics either, because I can't stand the thought of things not getting easier. I guess part of me is hoping that the song's optimism will rub off on me if I listen to it enough, much in the way people use positive affirmations. And maybe at some point I'll progress to the Five Stairsteps or the Hall and Oates versions of the song. But not yet, definitely not yet.

Due Date

Today is my official due date. While I anticipated a swell of emotions, I'm finding myself relieved that the day has come and that it will soon be over. This is the last date associated with my pregnancy, and it's just that. It doesn't have anything to do with Cayden at this point, its meaning is mostly tied to me. It's not Cayden's birthday, it was to be my day, a day around which I'd birth a healthy baby and bring it home. But on January 16, the focus shifted to Cayden, and the "I" emotions associated with today have a lesser place in my life right now. So if you're tempted to think of me today, and what I must be feeling, please don't. Instead, think of our beautiful baby boy. And smile.

Update

We received the written report from the lab in Berlin today. We've also learned that while Cayden's DNA was negative for the CHRNG sequence, there are four other genes associated with Multiple Pterygium Syndrome and the lab will now test for mutations in these. Best case scenario would be that one of the four is positive, and that we are able to test for it in future pregnancies. But for now, we wait. (I'm sick of saying that!)

Uncertainty

We got a call last night from our geneticist, Dr. Golabi, and Sharon, our genetic counselor. While they've yet to receive the written report from Germany, the initial results came back negative for Multiple Pterygium Syndrome. Needless to say, we were shocked, since all signs pointed to MPS as a diagnosis. It's not certain that Cayden didn't have MPS, but the genes tested thus far (CHRNG sequence) came back negative. Dr. Golabi and Sharon are already seeking out other resources, labs, doctors who may be able to conduct additional testing with the fibroblasts harvested from the skin biopsy taken before Cayden died.

They told us we also need to be open to other possible diagnoses, despite everyone's hunches that MPS was it. Pena-Shokeir Syndrome (I) is another disease that Dr. Golabi mentioned in the past, that we may revisit now. Pena-Shokeir is even more rare than MPS, with only 80-100 cases in the literature. Info on this disease can be found at: http://www.madisonsfoundation.org/index.php/component/option,com_mpower/diseaseID,520/

It is not completely clear to us at this point, but it does not appear that genetic testing is available for Pena-Shokeir, other than using ultrasound to look for symptoms during pregnancy. This is hugely distressing, as we would like to be able to test subsequent pregnancies early, which we thought we'd be able to do with Multiple Pterygium Syndrome. If it's determined that Cayden had Pena-Shokeir, it doesn't seem like we will be able to do prenatal testing.

We were definitely surprised by yesterday's news, but will wait as patiently as possible to get more information. We are confident that we are in the best place with the best possible team working extremely hard to get us answers.

Time

One of the platitutdes frequently uttered to moms whose babies have died is some variation of 'time will heal' and while I understand this in theory, here's my argument why I'm fairly certain time will not heal. Each day that passes is one day farther from holding Cayden in my arms, from touching him, from seeing his alive little face. Each month is another month that he should've been home with us, but instead is just another month more that he's not with us. While I understand the rawness may lessen, I'm not really seeing how time will do much of anything else, besides act as a brutal reminder that Cayden is not here.