Wednesday, April 29, 2009

A Harrowing Trip Down Memory Lane

One of the moms I connected with in the PICU back in December is back in the PICU right now following the second of her daughter's three heart surgeries to correct a heart defect. We have kept in touch a bit since December, so she she has included me in her “Care Page” updates regarding her daughter's recovery. It's bizarre to be on the receiving end of a Care Page. During Samantha's 5 week ordeal at the hospital I kept up a Care Page and wrote updates almost every day. Much like blogging, it was therapeutic (though sometimes very difficult) to write every day. We had a large network of friends and family who were eager for each day's news and wrote kind and encouraging messages to us on the site. It helped a lot to feel their support.

Anyway, it's a bit of a harrowing trip down memory lane to read my friend's Care Page updates. Sadly, her baby is having a lot of complications, and it's definitely a struggle for them. Of course, I know just how that feels. It brings back all of the emotions and turmoil of that roller coaster ride. One day things look like they might be ok, the next day, it's a nightmare. It's hard to watch them go through this, but at this point, I'm pretty vested in their story. So I'm on the Care Page every day as soon as I get an update notice. I've emailed a bit with the mom, too, trying to offer my support and encouragement. I think it has helped her to connect with me, though there are times I'm thinking she might wish she did NOT know our story. I don't think I would have wanted to know our story. I certainly can't say things like "I'm sure everything will work out fine!" with any kind of plausibility. I'm living proof that things don't always work out alright. Anyway, she's reached out to me, so I'm assuming she's not completely spooked by our misfortune. Still, it's an unpleasant trip down memory lane for me and a good reminder that infant (or any) heart surgery isn't something to take lightly. You know, just in case you were thinking it sounded like a lot of fun.

Oh, and I'm pretty much on the verge of rushing each of my three children to the ER at the least sign of swine flu....

Saturday, April 18, 2009

Sisterhood Award

Jessie at The Encouragement of Light blog has nominated my blog for the Sisterhood Award. Jessie writes a beautiful blog about the loss of her son Sage (as well as her father) and has introduced me to a whole world of poetry I didn't know existed. Thank you, Jessie.

The rules of the award are that I now have to nominate 10 blogs for this award. So here are my nominations, in no particular order:

CharmedGirl at a charmed life?

Tash at Awful But Functioning

Erica at I Lost a World

Jessie at The Encouragement of Light (I know. She nominated me. But it's a great blog, so I'm nominating it right back!)

Gal of growing inside

Jen of there's a new monarchy in town

Lani of elm city dad (well, really Chris too, but can a guy get the Sisterhood Award?)

Antigone of antigone lost

Caitsmom at A Fifth Season

Monday, April 13, 2009

Turtle Talk

Ever since Samantha died, I've been living in dread of how I would respond when someone asked me how many children I have. I don't know how to respond to that question, and I know many of you struggle with this one as well. To say “three” is to betray Samantha and her very existence. To say “four” opens up a whole line of uncomfortable conversation I don't always want to get into. Of course, it depends who's asking the question. And it's complicated by the fact that I wear a necklace with four small baby shoes with the birthstones of each of my children. I never take it off. It's pretty obvious that it signifies that I have four children. Back when I had four living children, it was a fun conversation piece. I didn't even get it until I had Samantha. I would always say, “Damnit, if you're going to have four kids, you may as well show it off with a necklace!” Now, I admit to hiding it under my shirt at times if I just don't want to go there or I sense that someone might ask about it.

Anyway, incredibly enough, no one has asked me that question - how many kids do I have - in the last 3 months. I've waited. I've dodged dicey conversation topics. I've covered my necklace. But it's never directly come up until, last week that is. We took the kids to a much needed vacation to Los Angeles (actually, Monrovia, a small town to the north and west of LA) to visit family, hit Disneyland and enjoy the glorious California sunshine. It was a good time. One of the attractions at the park was called “Turtle Talk”, which basically involved a computer animated Crush (from Finding Nemo) talking on a giant screen and interacting with the audience. So can you guess who the very first kid he pulled out of the audience was? It was my oldest daughter, who was sitting in the front row. He peppered her with a series of questions about where she is from and if we do much surfing in Virginia. She's not one for the spotlight, so she basically turned around and looked to me (sitting right behind her) for the appropriate answers to all these questions. Eventually, Crush the turtle decided to question me directly, seeing that I was answering his questions anyway. He gets my name, and then his very next question, I kid you not, is “So, Alyssa, how many kids do you have?” Let's see, I've been dreading this question for almost three months, and the moment it finally gets asked, I've got a microphone in my face and an expectant audience awaiting my response. I had to laugh at the absurdity of it all. I answered “three” opting to avoid telling the whole sordid story to my fellow Disneyland vacationers. His response (remember, this is in the character of Crush, the prolific sea turtle) was “Dude, you're just getting started! You should try 65!” Ha ha ha.

So there it is. In a way, it's a relief. I've been dreading the big question, and it finally came in front of my new 200 best friends at Turtle Talk.

Monday, April 6, 2009

7x7 at Glow in the Woods

Glow in the Woods is a site I visit often. Periodically they post a series of 7 questions and have their writers answer them. You can read their answers and post your own here :

Here are my answers:
1 Give us a few words you would have used to describe your body, your health or your sense of physical vitality before the experience of babyloss—and a few that you’d use to describe it now.

Before: Out of shape, still carrying the final 10 lbs of baby weight I never lost. Now: Getting more fit every day.

2 What do you do to take care of yourself? Has this changed?

Probably the number one coping mechanism I've learned in dealing with my grief is to work out. I somehow never lost my baby weighter from having Samantha, even 11 months after her birth. Now, I'm running again, which is something I haven't done for over 7 years, since my first daughter was born. I'm loving it. I think of my running time as my Samantha time. I listen to my ipod, think about her and work through the pain.

3 Give us one or two words to describe sex or physical intimacy before, and then after the loss of your baby.

Before: infrequent (we had 4 kids 6 and under!), but fulfilling. Now: very conflicted for me at first, but getting better.

4 Has loss and/or grief left a physical mark on you (a scar, a chronic condition, insomnia, a tattoo)?

Oddly enough, after my 4th (and last) c-section, my doctor treated the incision with something that left virtually no scar. I don't know how I feel about that. I have plenty of stretch marks though, which are kind of depressing. I also don't sleep as well as I did before.

5 Do you medicate or control your emotions with food, wine, altered states, prescriptions? Without judgement, what have you gravitated towards in an effort to heal, and how do you feel about it?

There has been no shortage of red wine and other beverages. Oh, and super dark chocolate is a daily indulgence. For a while I totally relied on Xanax to wind down and fall asleep, but that's becoming a bit less necessary with time.

6 Was physical healing important for you in the first year after your loss? What did/does physical healing entail and how did/do you work towards it? If physicality hasn't been a priority for you, what do you do that makes you feel stronger or more able to cope?

I'm still pretty early in the first year. I guess it became very important to me to finally lose the baby weight and reclaim my body. Not that I want to forget Samantha or the effect she had on my body in any way. It's just that I've literally been pregnant or nursing for most of the last 8 years. At some level, I'm revelling in the freedom of owning my body. Also, having been through this kind of loss, I fully understand that there is much in life we can't control. I guess I want to control how I treat my body because I can.

7 If you could change anything about your body and/or health, what would it be? What would it feel like to be either at peace with your body, or at peace with this babylost state?1 Give us a few words you would have used to describe your body, your health or your sense of physical vitality before the experience of babyloss—and a few that you’d use to describe it now.

I'd get rid of the stretch marks for sure. Peace with this babylost state? I doubt it. Acceptance? Do I have a choice?

Saturday, April 4, 2009

Heavenly Day

Tomorrow (April 5th) would have been Samantha's 15 month birthday. It's one of my all-time favorite stages: toddling around, maybe saying a few words, understanding more and more every day.

Today I mourn what will never be. I celebrate the 15 month old Samantha who lives only in our imagination. And yet my love for her is undiminished. It lives on, kept alive by purposeful acts of remembrance, as well as the many, many events that occur hourly (minutely?) that remind me of her presence and of course, her absence. There are moments of joy in my life, and for that I am grateful. But those moments are always, always accompanied by a painful realization: Samantha should be here with us.

I've put together a little video montage of some footage from her one year. It's got plenty of shots of my older children, who absolutely love to watch themselves interacting with Samantha onscreen. My son yells "again!" as soon as it ends.

I set the footage to a song by one of my favorite singer/songwriters, Patty Griffin. I love the song "Heavenly Day" and have found it to be a good way to think about our year with Samantha. Some lines are particularly meaningful:

"The smile on your face, I've been longing to see.
It's enough for me, baby. It's enough for me."


"Tomorrow may rain with sorrow,
"Here's a little time we can borrow."

Tomorrow did indeed bring a deluge of sorrow. 2008 was a hard year for us. As I mentioned in my last post, we were dealing with the loss of my brother and spending a lot of time with doctors trying to fix Samantha's heart defect. But it was also a wonderful year in many ways. It was the *only* year we had with Samantha, and so it means everything to us. As Dickens so aptly put it, "It was the best of times, it was the worst of times." That about sums it up.

Wednesday, April 1, 2009


So I used to think of myself as lucky. Insanely lucky. I have this great husband. We are the rare high school sweethearts who are perfectly compatible. Then and now. Really. And I had a great childhood; can't complain at all. I had three beautiful kids. Each of them healthy and happy and just a huge joy in our lives.

Enter 2008. Did I mention that my brother committed suicide three days before Samantha was born? He went missing on January 2nd, but his body wasn't found until later that month. Yeah, that's a whole other post (or series of posts) in and of itself. For now, I'll just say it came as a huge shock to everyone who knew him.

So, here's the timeline for our start to 2008: January 2nd, we find out that my brother kissed his wife goodbye that morning as if he was going to work, then was never heard from again. January 4th, I go into labor three days before my scheduled c-section (this being my fourth). January 5th, Samantha is born. It was a bit of a blur. It was such a weird and difficult time. Not many people from my family were able to come see her when she was born because they we dealing with this giant shit-storm, searching frantically for my brother.

I worried at the time that Samantha's birth would always be tainted by the events surrounding my brother's death. Still, having her, holding her, loving her, helped me get through that otherwise awful time. As I did with my first three kids, I fell head-over-heels in love with my new baby right there in the maternity ward.

Then, at one month, just a week after my brother's funeral, we found out that Samantha had a large hole in her heart. That she would have to undergo open heart surgery to correct it. That until it was fixed she would have a hard time gaining weight. That because of all this, she would need medications to help regulate her breathing, which would become labored and too fast over time.

Well, call me naively optimistic, but I still didn't worry *that* much. The doctors swore that this is the most common and easy-to-fix type of heart defect. Sure there were risks, and yes, her hole was on the large side of large, but I figured we'd get through the surgery, get her heart fixed, and move on with our lives. Oh how wrong I was.

As I've written in my bio and numerous other places, her surgery didn't go as well as it could have. Samantha got an infection, and was one of the unlucky 5% of babies who need a pacemaker after this type of open heart surgery. Still, the pacemaker was just to correct the rhythm, and I trusted the doctors when they said it wasn't that big a deal. Really, I trusted them. It did make me nervous that her heart was dependent on a man-made (battery-operated!) device, but I mostly believed it would all be ok. I figured in another 10 years medical technology would have found a way to correct her heart rhythm in some other way and it would all be just fine. Oh how wrong I was.

Even at that point, I still mostly thought of myself as a lucky person. Then, on December 10th I watched a team of doctors perform CPR on my daughter as she went into cardiac arrest. They told me, if you're going to go into cardiac arrest, a hospital is the place to do it. She was surrounded by doctors and hooked up to monitors when her heart stopped. Of course they could revive her, right? That's what doctors do. Well, they did get her heart beating again and put her on a breathing tube. But the damage was done. Severe brain injury, combined with an enlarged, non-viable heart. She was one of the rare cases where surgery to correct the hole didn't work out as it should have. No one really understands why.

I have not felt lucky since the cardiac arrest. My baby died. She defied all the odds (you know, in the exactly wrong way), and now she's no longer with us. I still feel fortunate to have the family that I do. I wouldn't trade places with anyone. But losing a brother and a baby in the span of 13 months? I kind of feel like this was retribution for the first 35 years of my life that passed relatively crisis-free. Can we please call a truce? I have no more room for tragedy in my life. I'm not a lucky person any more.