March of Dimes

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saffron

September 2010

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PRECIOUS THINGS

Jul 20, 2009 05:57pm (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 06:43pm (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

Posted by saffron | Comments: (5) | Permalink

GOD ONLY KNOWS

Apr 14, 2009 09:57pm (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 04:56pm (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

Posted by saffron | Comments: (3) | Permalink

THINGS THAT MAKE YOU GO HMM?

Nov 13, 2008 12:49am (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

Posted by saffron | Comments: (5) | Permalink

PEACE, LOVE, AND UNDERSTANDING

Oct 20, 2008 11:03pm (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 09:25pm (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 06:03pm (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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HAPPY BIRTHDAY DEAR DONOVAN

Oct 05, 2008 09:43pm (EST)

So Donovan will be 2 years old tomorrow. Two years. We had a party for him today - a picnic in the park near our house. I made a lego style cake, which turned out ok. It was one of those "mom" moments where I actually came close to succeeding in what I wanted to do. I am not a crafty person, so it was a victory to create the lego cake. Of course I am still finding blue and green food coloring on my clothes and even in my hair. But it was worth it.

Donovan ate his whole cupcake and then nearly fell asleep in his high chair. I took pictures... and we got some video.

I have a lot of ambivalent feelings toward Donovan's birthday - but that's for another blog.

Today it's time to sit back and just watch him be the happy, healthy two year old that he is.

Happy Birthday Donovan!

We love you!

Oh, and the picture also shows my 6.5 year old Aidan. One of the totally odd by-products of Donovan's early arrival is that my sons' birthdays are almost exactly one-half year apart. So we can "legitimately" celebrate the other's half birthday on the actual birthday of the other. It's convenient, certainly.

DSCN1961

DSCN1976

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WII ARE FAMILY

Sep 28, 2008 08:04pm (EST)

My husband bought me a Wii for Mother's Day. For my birthday he bought me Wii Fit. Despite my best intentions, I have used it rather infrequently. My sons like watching the attempts... but as you will see in the attached picture, Donovan thinks of it more as the Wii Pffft.

I went to the MOD Celebration for Babies yesterday at the Beverly Hilton in Beverly Hills. I was a little out of my element, but it was fun.

Donovan will be 2 years old a week from Monday. It's funny to think that just two years ago, I was blissfully ignorant of prematurity. Everything was going normally. We were both fine. And now 2 years on, we're almost back to that. We have a new normal, but in many ways it's a better normal. I feel like I appreciate it all more. And I try to remind myself of that whenever something minor happens.

DSCN1873

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