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saffron

February 2010

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LIVING IN THE AFTERMATH

Oct 14, 2009 02:19pm (EST)

Rattling around in a mostly empty office. Yesterday morning, the power was out when I got to work. I had to climb five flights of stairs to get to a dimly lit office. But work is mostly empty these days. Everyone is shuffling off to whatever awaits - a move to the Midwest to continue in their displaced jobs, a mover to another company here, back to school, or on unemployment. It's a weird transition. Slow layoffs. Five full months working in the full knowledge that it's in vain. So we are all manufacturing our meanings.

So for me, I am planning to go back to school. It's comfortable. It's something I enjoy. I'm hoping to get into the MLIS (Masters in Library and Information Sciences) program at UCLA. Who knows. I am still looking for jobs, too. I am also planning to work on some writing. So, I am looking at doing a lot of research into preeclampsia/eclampsia/toxemia and HELLP syndrome. I want to write a social history of the disease(s). This is inspired by the many different stories I have heard from people who have dealt with this. I know too many people who had no idea what it was when it happened to them. And there is a too pervasive attitude that it's a disease that only happens to women who are not getting good prenatal care. This attitude is wrong in so many ways.

I've started surveying the current information on the disease as it's presented in your average pregnancy book - (i.e. What to Expect When You're Expecting). And also at what point in the book it's presented. I found one book that talks about it for the first time in a chapter on the 8th month of pregnancy. Not helpful for those of us who had already delivered by that point. Preeclampsia is more common than breast cancer. But you wouldn't know that by the looks you get from people when you try to explain it. And you wouldn't know that if you go into a grocery store or watch football during Breast Cancer Awareness month. I certainly don't mean to diminish the importance of breast cancer, but I do want to raise awareness of preeclampsia.

So, I'm going to bury myself in some books and other research. It'll be fun. It'll keep me focused as I redefine what I want to be when I grow up. It'll be a good thing for me.

It's been fun reading everyone's post on Share Union. I wish I could have gone. I will *try* to come to Atlanta, but sheesh, you would think MOD might consider something a little further west some time soon. You know, San Diego is beautiful in October!

Jenn

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YOU CHANGE THE EQUATION I ADD UP TO

Oct 07, 2009 08:41pm (EST)

NOTE: I wrote this yesterday, on Donovan's birthday. My internet connection went down before I could post it. So here goes....

Happy Birthday Donovan! Today is Donovan's 3rd birthday. He's healthy and was just dismissed from his early intervention and speech therapies. He doesn't qualify for further services. Much thanks to Sarah and Kari for helping him get this far. We will miss them!

A word on the title. It's from a song by Poe called "Amazed". I can't hear it without thinking of Donovan. It really sums up how completely your life can be changed by someone else. And how events can leave you in awe.

"I'm amazed
The walls that I wouldn't mind crashing through
And I'd do it for days and days
I'm amazed, I'm amazed
At all of the things I know you have done
'Cause this time I think that we've really won..."

Donovan is 3. That is the same number as his first Apgar score. He wasn't breathing on his own when he was born. And I needed a ventilator to keep me going too. I struggle with trying to make sense of it all, but I guess this is one of those things that I will just have to accept for what it is.

This year has been a little easier in some ways. Donovan sort of gets the idea of birthdays. We also just got back from a trip involving some good old grandma spoiling. (And a wonderful dinner in Bloomington with Whosures and Miss Riley -- by the end of which, my older son Aidan and Riley were acting like they had known each other for years.)

It gets easier. But I am still gobsmacked by it all when I let myself think of it. So, I did think of it. I teared up - and then just cried - while listening to Kate Bush's "This Woman's Work" at work today.

It is a part of Donovan's story. It is a part of my story. I hope that I can continue weaving it into my life in productive and inspiring ways. I hope that I can continue sharing it for years to come. And I hope that I will always have people around me who get it.

Thanks guys - for being around. For getting it. For being open enough to share your heartache and your triumphs. I hope you all have a great time in D.C. I will raise a toast from the West coast!

Jenn

"With you there's no easy answer
It's true
You change the equation that I add up to
And all of the things that I thought I knew
You turn it around
I'm amazed
When push comes to shove what I'd give to you
Everything
I'm amazed
The hallways I wouldn't mind crawling through
And I'd do it for days and for days"

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PRECIOUS THINGS

Jul 20, 2009 04:57pm (EST)

So, I went to a Tori Amos concert on Friday night - and it capped off a really quite yucky week with some much needed catharsis. On Wednesday, my company announced that it will be closing the Los Angeles office at which I (and about 75 others) work. So, I will be employed through December 15 and after that I will be joining the ranks of the unemployed - and uninsured (barring some miracle).

The upshot of all of this is that I've gotten in touch again with an emotion that I think usually gets lost among all of the others - anger. It's not one I like to indulge that often, but here it is again - and I find that it has brought up everything that has made me angry in the past few years. And yes, some of that anger is still attached to Donovan's birth and the immediate aftermath.

I'm angry that I missed his birth. I'm angry that I missed the signs and nearly paid for it with both of our lives. I'm angry that my doctor and everyone else missed the signs too. I'm angry that there aren't more signs, and that no one really seems to know much about HELLP syndrome. I'm angry that part of my support network came flying apart at the seams at a VERY bad time. I'm still angry at the person who tried exceptionally hard to pull it apart. It's a long, unpleasant story...

And now I'm angry that even though I was ready to leave the job, I am not ready for it to leave me...

Jenn

P.S. So as not to be all doom and gloom - my husband's show (he's the post production supervisor) got an Emmy nomination! So please pull your mojo together and root for The Dog Whisperer to bring it home!

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I FEEL THE EARTH MOVE

May 01, 2009 05:43pm (EST)

Title - references the very recent earthquake that happened as I began to write this... Oh the fun of living in Southern California!

Our big March for Babies happened last weekend here in Los Angeles. I was in the family teams tent, so I missed a lot of what was happening on the stage. But I was busy, busy, busy at the tent. I got to hang out with a few other Share moms - Olivia Leigh's mom, and Sethman's mom. I also got to meet Olivia Leigh and Seth - I tell you, that's what keeps me going. To see these babies who have come so far... I see it every day with my own son, but it's humbling to see it in other kids as well.

I spent most of the time during the walk in the family teams tent putting the quilt together. It's incredible to see all of the time and energy people put in to remembering and honoring their preemies. When March for Maddie's mom - Heather came up to hand off her square, I wasn't sure what to say. I asked her how she was doing and thanked her for coming. She spoke before the march - it's on YouTube. It makes me think about what all mothers who have lost a child must go through. I know so many of you have experienced that... and the strength all of you have amazes me and makes me want to keep fighting.

Here is a link to her speech. heather spohr's speech

The March for Maddie team has raised over $50,000 for the March of Dimes.

Jenn

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GOD ONLY KNOWS

Apr 14, 2009 08:57pm (EST)

I haven't blogged yet this year. But I have been logging in and reading and commenting upon occasion...

Today I went to a funeral for an adorable little girl. Maddie Spohr was an adorable 17-month-old girl. I never had the chance to meet Maddie in person, but her mother, Heather, is a member of the Los Angeles Family Teams committe.

Maddie's passing has made the local news and is starting to be picked up by national outlets. Her family team, Marching for Maddie will be walking at the Los Angeles march and at different walk sites across the country.

Maddie's story is heartbreaking.

You can see more of her story at:

www.marchformaddie.com

This year Team Donovan will be marching with Maddie. I am marching in the hope that I will never have the need to attend another funeral for a young child.

Jenn

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NEW RESOLUTION

Dec 30, 2008 03:56pm (EST)

Today a good friend from college died in the middle of an operation to remove a brain tumor. His heart stopped. My husband talked to him just yesterday. I am saddened. It's not supposed to be like that. We'll miss you Jason!

Earlier this afternoon, I donated blood. I'm never quite sure how to answer the mini health questionnaire. They ask if you've ever had lung or heart trouble, among other things. I answered yes. When the nurse asked me about it, she had to go get her supervisor. Neither of them have ever heard of HELLP syndrome. I also mentioned that I had ARDS (Acute Respiritory Distress Syndrome). Still, they couldn't find either of these in their database of things to watch out for so they asked if they could just switch my answer to "No". I explained what happened briefly and got the "that must have been really scary" response. I don't mind, but it's just another little reminder that things are different now.

I've cycled back into insatiable curiosity about what happened when Donovan was born. I recently got copies of all of my medical records from the hospital. It runs to over 265 pages. Apparently I was "restless, agitated, and combative" when they brought me in. I don't remember as I was seizing rather violently too. I also ripped out an IV and they had quite a time getting a good one established. I've read over every word in the record now. I'm not sure what I'm looking for - but I guess I just want answers or closure. I've spent a lot of time looking up medical acronyms on the internet. I'm learning a lot - but I don't think it'll satisfy every question. I don't suppose anything will. I'm also chasing down rabbit holes looking for patterns - syndromes are a weird beast. They are essentially a group of symptoms with no known central cause. I had HELLP syndrome, which led to ARDS, which also brought about sepsis, and a few other associated problems. Any of these things could have killed me. But they didn't.

I'm becoming a bit of a hypochondriac - which I suppose is a natural response to nearly dying. I still have some residual involuntary muscle spasms - not exactly seizures, but scary nonetheless. My doctor isn't worried - so I guess it's time to relax a bit.

It's just so scary to think about how fleeting life can be. And I know that so many of you on here are all too familiar with that.

Goodbye Jason - we'll miss you!

Jenn

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THINGS THAT MAKE YOU GO HMM?

Nov 12, 2008 11:49pm (EST)

Awareness is sometimes an uphill battle. We have basically all had our awareness of prematurity thrust upon us by circumstance. But today I ran into a surprising reaction to my attempt to bring the MOD message to a wider audience. I sent out an e-mail to some of my coworkers with a link to the petition and a short plea for a minute of their time to sign it.

I don't get much immediate response, but a few people mention that they signed it. One friend mentions that she forwarded it to a bunch of her friends and that she got a somewhat nasty reply from one. Her friend who is having fertility issues basically said that she could tell me where to stick it and that I should be glad to even have a child.

I didn't really have a response for that. I don't think there is one. My friend, who does not hide her feelings at all, had already written her back. She took great offense on my behalf.

It reminded me a little of some of the emotions that I was a little less than proud of during the 2.5 years it took us to conceive our first child. I would never have said or written anything close to that - but I did have a bit of jealousy now and again. It's sad - and I do feel for her, but man, that's just uncalled for.

On the whole, Prematurity Awareness Day was hopeful. People are aware, I think. I kept surveying the main news web sites to see where and how they were covering the press release from the March of Dimes. It slowly crept up onto Yahoo, NY Times, and eventually CNN. I'm hoping my company will take notice. Considering the percentage of premature births within my department over the past 3 years has been 75% (3 out of 4), I hope they'll step up soon.

I hope your PAD was eventful in a good way.

Jenn

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PEACE, LOVE, AND UNDERSTANDING

Oct 20, 2008 10:03pm (EST)

Ah, ShareUnion. What can you say? It was beautiful, poignant, memorable, and often very funny. There is a reason I came back this year and I was not disappointed. Except in the bartender. He was very disappointing.

I got to spend a good amount of time meeting new people and getting to know people I had met briefly before. I palled around with a great group of women and men. And Chad, our new favorite photographer.

I walked a lot. I sat in conference rooms listening to people who were pouring their hearts and energies into a cause much bigger than themselves. I shared my story. I shared our story. I mentioned the word HELLP and was met with knowing looks of sympathy and empathy. I didn't have to explain.

I was floored by the power of prematurity again and again. Like when Catharine, the 2008 national ambassador, recognized me when we got on the same elevator. We had met once before about a month ago at the Celebration of Babies in L.A. But she remembered that I was from California. A young girl, a preemie no less, with that kind of memory is impressive.

It was great to see people come together to share a common cause. It was wonderful to meet everyone. It was refreshing to get up and over the utterly divisive tone that politics too often throws us into. And though I can be as partisan as anyone (friend me on Facebook if you really want to know) - it was nice to leave that out of the discussion for once.

I'm glad I went. And I'm glad to be back home with my family. Thanks y'all.

I'll share a "red" zinfandel with any of you anyday. We can raise a toast to Chad.

Jenn

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LEAVING ON A JET PLANE

Oct 14, 2008 08:25pm (EST)

Quick blog today! I am leaving tomorrow afternoon for Houston. My mom-in-law is here. And the boys are ready to get some grandma love. So, I will be travelling light (!) and won't have to navigate an airport with two children!

So I was looking at the hotel's web site and found that it's very close to the second largest mall in America. FUN! I've only been in Houston on stopovers, so this will be a new experience.

I am also going to get the chance to escape the wildfires that have been burning around the perimeter of the San Fernando Valley. Nothing burns the lungs like a sky full of smoke and ash. It's a little better today - but it's definitely not good air quality. I've been feeling it in my lungs - and can only imagine those with compromised respiratory systems.

I'm looking forward to the VLC and Share. It'll be good to get away and see all y'all!

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JIG OF LIFE

Oct 06, 2008 05:03pm (EST)

Happy birthday Donovan!!!

It's been two years. Two years since I found myself on the floor of my kitchen trying desperately to hold on long enough for someone to come home and find me. I was beyond being able to help myself. All I could do was hold on, hang on, and wait.

I said in my last post that I have a lot of ambivalence toward today. It's not that I'm wishy-washy about it - because it's much more manic than that. Really high highs and some pretty low lows. It makes me think of a Tale of Two Cities. It was the best of times. It was the worst of times. It was one of the best days of my life, but it was hands-down the absolute worst day I've ever had. So, I've been bouncing off the walls so to speak. One moment revelling in the beauty of life. In the joy of living. In the fact that I'm alive. The next moment feeling overwhelmed and emotional and just plain sad.

And though it still doesn't resolve anything, I've been trying to figure out how and why I survived. How and why Donovan survived. I called myself lucky last week and the receptionist at work said that I wasn't lucky - I was blessed. My boss chalked it up to "force of will". I don't know. I think myself around in circles. In the end, I guess it's all of these things. You can embrace the totality of life in one day. It was extreme all the way around.

I am profoundly grateful to be here. I am profoundly grateful that my son is here. Blessed? Lucky? Willful? I guess in the end I just have to be. Because I still am.

Jenn

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