Archive for February, 2008

You know what’s really hard?

When we lost Cole, a piece of me died. I lost my baby, a piece of my heart, and the ‘dream’ of twins. But we put all of our love and energy into Lina. As long as she did well, I had a bit of Cole with me. Not to say it was easy to get that focus. It was a a long time before I could let myself believe her progress. Appreciate it. Celebrate it. It was a long time before I could admit to myself she was doing well. Whenever anybody asked me, my responses were qualified all over the place.

“Well, she seems to be doing OK. But she’s still got a long way to go. It’s too early to tell for sure. I don’t want to be too optimistic.” and so on.

But when I did finally start to let that guard down, I started to be able to smile again. Genuinely. And sometimes I even felt a little bounce in my step.

As long as we had Lina, I still had my twins. I imagined telling her about her brother as she grew up. I imagined taking out his memory box on special days and showing her his little hand and footprints. The ultrasound pictures, the clips of his black hair. No, I wouldn’t get my Mickey and Minnie on Halloween. But his spirit, his place in our family would be held by her.

But now…without Lina, I feel like I lost my twins. Yes, we will never forget them. Annika remembers, and I hope she will always retain some of those memories. But with my empty arms…it sometimes feels like it never even happened. I know in my head that they existed and that their memories have been honored in so many ways. They live on in many many hearts. But it still feels so unreal. Sometimes it feels like I never had them. Like all this never happened. But the heartache is real, for sure.

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It’s all the worst

It’s been a week since I’ve written here. Partly this is because I’m back at work – so less free time. Also, I’ve been soooooo tired for some reason. Like, going to bed at 8:30 tired. And last week I had two evening commitments (rare for this homebody). I attended a bereavement support group on Wednesday night, and an actual social dinner with friends on Friday night (for which I drove three – yes THREE – hours to get into the city. Ugh). Actually, those two things alone could account for my fatigue.

Maybe more importantly, the reason I haven’t posted this week is because I don’t feel like I have anything uplifting to say. I’ve been so terribly sad, and I’ve begun to feel like all I have to say is yet another variation on “I miss my babies so much”. Somehow I feel like I should be writing less about that, and more about the things that are good in my life. Like the fact that I have a wonderful husband and an amazing daughter who truly delights me every day. She does. But I’m still consumed with grief. Consumed. It’s almost all I think about. And really, this blog was started for Lina and Cole. And I still have so much to work out. So to that end…

The bereavement group was held at my local hospital (where Lina was for just a few days). I was glad to find it, because I find it helpful to talk about it. It makes me feel like I’m not forgetting. Like I’m keeping them close to me, somehow. As much as I wish no other mother (or father) had to experience what we did, I also find it helpful to hear others’ stories, coping skills, and yes, progress. How people are able to move on. Because I feel like I can’t.

The group was for peri- and neonatal loss, although I think I was the only one (of 6) whose loss was neonatal. Some people expressed how much more difficult they imagined my situation was. To lose my babies after they were born. Sometimes I think the same. If I had just lost them before I’d gotten to know them, before I was crushed and then started to build up hope only to have it crushed again… Maybe that would have been easier. Easier? Maybe that’s not the right word. But maybe it would have been something…less horrific. But then I think, no. At least I got to know my babies. I got a glimpse of their personalities. At least a little. Especially Lina’s. And that’s something. I think how much it would hurt to have a baby, to grow those dreams, and then never even have a moment to share with them (outside). That’s “the worst”, too. 23 days and 100 days. Not enough. Yet each day was a blessing.

I’ve thought a lot about “comparing” loss. I talked about it a bit with Zina, the NICU psychologist. We spoke the day before Lina died, when we were back at Columbia Presbyterian. Zina had just returned from a humanitarian trip to Rwanda. One that sounded fascinating, and that I had imagined hearing about after I had Lina at home and was enjoying our “newborn” time. When I asked her how it was, it occurred to me that she’d been spending time with people who may have seen their entire families tortured and killed in front of them. And here I was, talking about just two little babies…who had the best medical care possible in their short lives and who had an unbelievable amount of love. Should I be putting that in “perspective”? Zina told me that she had thought a lot about drawing parallels, and concluded (if I’m not misremembering her words) that you can’t, really. It’s all “the worst”.

How could I say to someone “oh, but you only lost ONE baby”. Or “at least you didn’t ‘get attached’”. Are you kidding me? I remember what it felt like back when I had “only” lost one baby. I don’t think losing a second one was “worse” – it was just “more”, or maybe “deeper”. I don’t know. But also, I was attached to my babies from the moment I knew about them. And thank god I got attached. As heartbroken as I am, I treasure every moment I had with them. I think not having that would be worse. Yeah, it’s ALL the WORST. It really is.

One month

Today is exactly one month since we lost Lina. One month ago right this moment I was holding my little girl’s hand, watching her vibrate with the oscillating ventilator. I was quietly singing songs in her ear and telling her the doctors were going to come and make her feel better (and hoping beyond hope that it was true).

Now I am sitting at my desk at work, crying. Trying to be as quiet as possible so that I don’t attract attention, so that I don’t make everyone around me uncomfortable.

I only just got my e-mail ID reset on Friday afternoon, so now I’m going through my 2000 e-mails (deleting most). I’m coming across so many e-mails written on October 2 (the day I went into the hospital), October 4 (the day Cole and Lina were born) and right around that time. I see an e-mail dated October 3, and all I see is me in my hospital bed, scared to death about what was about to happen to me and my babies. I could still feel them moving inside. I still had all the hope in the world that they would be OK. I see an e-mail from October 8th. That’s the day we found out about Cole’s IVH. October 26th. We were holding our son in our arms as he slipped away from us. It’s just too much to think about the mundane things that were happening while my entire life was changing.

Still in complete disbelief at the path I have traveled. I cannot believe how much this hurts.

Thoughts about blogging

I’m new to blogging. You can read a little bit about how and why this blog came to be right here. But I never really thought I’d be a blogger, because well, first I never thought I had anything so interesting to say that anyone would bother reading. And also because I’ve always been an awful journaler. I used to wish I kept a journal. And I’d try from time to time. I’d write an entry or two. And then I’d go back and reread them. And I’d be mortified at how lame I am. So I’d tear the pages out of the pretty book and rip them into tiny pieces. And put half of them into one garbage can and half into another so that nobody could ever reconstruct them and actually see how lame I am.

I’m going to cut this off here because it’s such a long post, but read on for more about why I like blogging and to hear about my new favorite blogs and ohmystinkinheck’s contest that I hope I win…
Continue reading ‘Thoughts about blogging’

Islands in the stream

SUPERGIRL!It’s Annika’s new favorite song. This morning she had to watch our recorded episode of American Idol from last night, since she had to go to bed. I’ve always been a fan of both Dolly and Kenny, so to be honest, I didn’t mind watching the snippet over and over (and over) again. She quickly learned the lyrics, but I was a little confused by her version of one line:

“We lay down on top of each other”.

Wha?!?

After listening again, I got it. “We rely on each other, ah ah”. Get it? Rely? Lie? Lay down? Makes perfect sense.

Here’s a picture of her playing with daddy tonight:

flying.jpg

How many kids do you have?

Today when I picked Annika up from school it was storytime. She said she wanted to listen to the story before we went home, so I took a seat in the back row and waited. Midway through, the boy sitting next to her turned and asked

“Do you have a baby?” (baby-aby-aby-aby went the echo in my head)

Ouch. That’s a tough one. In the second or two it took me to respond, a million things went through my mind. Then, considering the fella is 3 and is probably looking for a simple answer, I responded

“No”.

He turned and looked quizzically at Annika.

“She died. And my brother too.”

And then it was over. Exhale. Inhale. Exhale.

Since Cole died, I’ve given a fair amount of thought to how I would answer the question “How many kids do you have?” I guess the answer will depend on the circumstances. My mood, who’s asking, the context. Easy enough to say, but whether or not I hyperventilate or pass out when actually asked remains to be seen. Fortunately I have not been faced with that question. Well, until today, sort of, by a 3 year old. I didn’t pass out.

Today was my first day back to work. It was harder than I thought it was going to be. And I thought it was going to be hard. The first few times anyone talked to me, I cried (I didn’t think I would). I tried to hide in my cube the rest of the day. And then I did something that probably wasn’t so smart (if the goal was not crying). I called Mary. Our nurse. What can I say? I wanted to talk to her. I had tried calling yesterday, but she was off. I had time to kill at work because my ID/password are broken, so I called again. She was there. And she said all the right things. Including “you’ll always be the mom of three children”. Thank you. It was so good to talk to her. It really was. Maybe not so good for my image at work. Sniffle. (Actually, it was OK. Only a few very nice people were within earshot. And I’m not that easily embarrassed anyhow).

And a related question: am I still a mom of twins? My heart says yes, but I will never have those twin experiences. So can I relate to twin moms? Can they relate to me? While I was on bedrest, about a week before the babies were born, I joined the local Moms of Multiples (MOMs) club. I signed up for a playdate group for Annika, eager to meet other MOMs and get some pointers before the little ones arrived. I signed up for the Halloween party. After they were born, and especially after Cole died, I was afraid to reach out to them. A babysteps (online community I belong to) friend from TX actually contacted them for me and an amazing woman reached out to me. She wrote the most heartfelt, comforting e-mails. She brought me a huge stack of books. She brought me a gorgeous plant – cyclamen – which I killed (sorry, Leah). She put me in touch with another incredible MOM, who’d just lost one of her daughters a few months earlier. When Lina died, the MOMs really came out to support me. They sent me e-mail and cards, posted words of support on the bulletin board, and organized meals. At first I felt strange…accepting meals, help from “strangers”. But I can’t describe the way my heart felt when we came home on the night Lina died to find a box of hearty food on our doorstep.

Anyhow, what I’m trying to say, is that the MOMs are an amazing group. They are so generous, sympathetic and supportive. But when it comes time next September to pay my dues… do I do it? Do I still “belong”? When Lina was still alive, I felt…yes. My child is still a twin. And sure, I still have twins. But without the experiences…do I belong?

On the MOMs site, there is a “roster” with names and addresses, spouses names and a smiley face for each child with their ages, calculated automatically from their dates of birth. I have 3 smiley faces. One says “3 years” and two say “4 months”. But Lina and Cole are not 4 months old. They are 23 days old and 3 months 1 week old. They will always be those ages. Forever.

A plug for my favorite water (hint)

hint waterI just got an ice-cold bottle out of the fridge and felt like I need to share this with the world (well, with my little world anyhow). I do not work for this company. I just like love their water.

I have been searching for this product for a long time. I like to drink water, plain water, but sometimes I need a little ooomph. Y’know? I like the flavored seltzers, but I don’t always want the carbonation. “Flavored” waters always seem to mean flavored with sugar (or fake sugar). “WHY, OH WHY can’t they make an UNcarbonated, UNsweetened water?”, I’d lament.

Well, they do. I found it at the cafe of the NICU’s hospital. It’s perfect. It comes in flavors like Pomegranite-Tangerine (my favorite), Mango-Grapefruit, Peppermint, Cucumber. They sell it at Whole Foods Market (though not the one right by my house, grrrr…) or you can order a case directly from the company with free shipping!

I really don’t work for them.  But I would if I could. Yum.


About Me

I'm a grieving mom. I have one beautiful daughter, Annika, who's 3 years old now (born 12/28/04). I also had twins, Lina and Cole, on 10/04/07, born at just 26 weeks. We lost Cole after just 23 days due to complications related to his prematurity. Fiesty little Lina overcame so much and just when she was getting ready to come home with us, suddenly had a complication unrelated to her prematurity and passed away on January 11, 2008. This blog is about getting through it. More...