Thursday, March 24, 2005

Dictionary of Loss

I found Kara L.C. Jones' site today. She's the editor of the 'zine, A Different Kind of Parenting and co-founder of Kota Press. I especially related to her Dictionary of Loss. The following really struck me, since it describes how I've been feeling for the past several months, especially now that I'm back at work, in a very "public" role:

"Fear of the Public, n. 1. This fear will hit the bereaved parent from time to time until they are afraid to go out, afraid to see people, afraid of leaving the confines of their home in hopes of avoiding more pain or having to answer questions like 'When was your baby born?' or 'How many children do you have?' Involves knowing that you really want to talk about your child who died with these people, but realizing that the people who ask these questions don't want to hear the answers and will give you platitudes instead of comfort."

Wednesday, March 23, 2005

3 months ago

Three months ago today, I got to hold my son for the first time. He was three days old. We didn't get to hold him or touch him very much after he was born because he was easily agitated, and disturbing him while he was working so hard to stay alive tended to make his numbers go down.

When it was clear that he wouldn't be with us for much longer, the NICU nurse told me she thought I should hold him, and carefully wrapped him in a blanket and draped his tubes over my lap as she handed him to me. I instantly began to weep, both for the joy of holding my baby for the first time, and for the sadness of knowing that he was going to die.

I tried to be strong for Julian, as he had been for us. He had made it through labor and had survived for three days so we could get to know him before we had to say goodbye. I told him I loved him, and I thanked him for the time he had given to me, to us. I told him that it was okay for him to stop fighting for us and that we would be okay. His daddy told him to go to sleep.

Moments later, I could see on the monitor to my right that his heart rate was beginning to decline more rapidly, from triple to double digits. As he was dying, he had a period of becoming very alert. He opened his eyes and looked up at us. I am certain he wanted to let us know that he had heard us and that we had done right by him. He left us at 10:50am.

Julian, our sweet, beautiful little boy, mommy and daddy will always love and miss you terribly. Perhaps "this world was never meant for one as beautiful as you."

Friday, March 18, 2005

Ambien, take me away

A woman I met in my pre-natal yoga class called me today to invite me to her home for a get together of new moms in the neighborhood. We were due around the same time, but I haven't seen her since November. When we met, I knew we were having a boy, but she and her husband decided not to find out about the sex of their baby. As it turned out, she had a little boy, too. Fortunately, she was kind enough to still want to see me, and didn't make me feel like our only connection was that we were supposed to be swapping newborn diapers.

Shortly after that, I ran into a student in the public restroom at work, and she asked about the baby. I hadn't realized how public my pregnancy had been. I told her that the baby had died, and she replied with, "Congratulations!" She was clearly not expecting to hear bad news, and had blocked it out in some way. I had to repeat what I had told her. She was speechless, and felt as horrible as everyone else who has asked an innocent question and gotten back my not-so-innocent answer. It just hangs in the air like a fog.

I don't know how much of this I can handle. I really don't.

I can't wait to be pregnant again. Robert came and picked me up from work today, and we went out to dinner. I had a few emotional moments and at one point I had a very physical, "gut" reaction. I feel like I am suppressing a howl over my pain of losing Julian. I feel the loss so physically, so acutely, at this particular moment, in a way that I haven't since the first few days after he died, when my body was still healing from labor. It may be that we are approaching the 20th of the month. He would be 3 months old.


I wish I was cute and popular like my soul brother, Joel. At the risk of depressing him, I have to point out that although we are twins, he is actually older than me.

Thursday, March 17, 2005

Back to work

Well, I went back to work this week after 2 1/2 months of maternity leave and 2 weeks vacation. As I suspected and had been warned of by other women who have been in my shoes, it has been a difficult week. Luckily, I went back during a quiet time in the semester. I've had several tearful visits from colleagues and students who have warmly welcomed me back. I've also had the unfortunate experience of having to tell people who didn't know what happened.

The other morning on my way to work, I stopped off at the drug store near my office and the cashier asked about the baby. I broke down, causing a minor scene. I nearly turned around and went back home, but bravely went into the office and managed to get through the day. The work itself hasn't been difficult or overwhelming, but being in a position of having to interact with a lot of people is hard right now.

Most people have been very supportive, but the most disappointing response to my return has been from people who have actually avoided or ignored me. I am so personally hurt and angered by that type of behavior that it makes it hard for me to be diplomatic and collegial.

My son, Julian, was such a tough little guy, and I learned so much from him in the short time he was here--to take each day at a time, to take nothing for granted, to choose my battles wisely, and to stick up for myself and honor his memory when I need to. I refuse to manage other people's discomfort or to pretend that I'm fine to make other people feel better. If they think they're uncomfortable, awkward, or anxious, how do they think I feel?

Julian's fight during the short time he was with us inspires me not only to go on, but to live my life unapologetically and with courage. I honor him by being the type of mother he would have been proud of, as I am of him.

Tuesday, March 08, 2005


I've found that my grief takes on a different character depending on who I'm with. With some friends, I'm completely weepy, while with others, I become "the bitch," "the gossip," "the complainer," or "the educator." I was with a good friend yesterday, who doesn't mind hearing me complain (we tend to encourage each other in this regard), but I found at one point that my usual mile-a-minute banter about stupid things people have said or done switched to a mini-breakdown in two seconds flat.

I was recalling how the previous day, I left my apartment building, ready to face the day. Some days can be more challenging than others, but I was feeling okay. Not great, but okay. As I was leaving, one of the doormen was on the phone and I heard him talking about his baby girl and the things she was starting to do, like turn her head and look up at him. She was born within days of Julian, and I have always been slightly resentful of the fact that he never asked me about our baby or acknowledged our loss, although I know he is more than aware of the situation.

It's a small thing, but just hearing about his daughter's little milestones caused me such a wave of conflicting emotions. On one hand, I want to be happy for him. In the beginning of all this, I never thought that seeing or hearing about someone else's baby would upset me--after all, it's not my baby. Someone else's happiness doesn't have to mean my sorrow, but I can't help feeling jealous that I don't get to experience those little milestones with my baby. That's just it--I want MY baby.

My friend tried to comfort me by saying that I'd get to have those experiences soon enough, but as I started to tell her about the women I've met who've had subsequent pregnancies resulting in healthy babies, and how even they described their experiences as bittersweet at times, I lost it. I know there will be moments with our next baby that will be simultaneously exciting and beautiful and sad and painful, because we'll be reminded of the things Julian never got to do. I also know that we will love our next baby just as much, and hope to never cause him or her to feel otherwise. I think it will always be a little tough, knowing that there is someone missing from our family. I hope we are able to find ways over time to keep Julian in our lives. He will always be in our hearts.

Sunday, March 06, 2005

Like father, like son

Robert and I both had our hair cut last night by our friend and hairdresser, Brian, who comes to our apartment. Afterwards, I asked Robert if he thought my hair was too short. He asked me to turn around, from side to side, then smiled. I said, "You're laughing! It's too short!"

"No," he said, "I'm smiling because you look like Julian. It's cute."

It's strange to look in the mirror and see my baby. I also see Julian when I look at my husband, who looks nothing like me. For months we had wondered what Julian would look like, being very racially mixed. We tried to picture him, his eye color, hair texture, but it was anyone's guess.

When he came out, he was so beautiful and so familiar. We would have been able to pick our baby out of a crowded room, though we had never seen him before. It was like we had known him forever. We were both struck by his subtle resemblance to both of us, yet he was his own little person, feisty and stubborn as he fought to be born and to survive for a short while so we could get to know him. He got that from us, too.

Pictures of you

Several of the brave women from SPALS have written to let me know how much "Julian's Room" has meant to them and how they have been touched by our little boy. I am constantly moved by the women I have met who have experienced their own tragic losses, yet are able to provide support and encouragement, even in the face of their own grief. It means so much to me that there are complete strangers out there who want to hear what I have to say and enjoy looking at pictures of Julian. It fills my heart to know that his life had meaning to those outside our inner circle.

This has been an emotional week for Robert and me, as I think we are experiencing a cumulative effect of our daily battles with grief. In addition to remembering and mourning the loss of our son, our hearts feel heavy with sadness for the hundreds of parents we have met (in person or via internet) and the stories they have shared about their dearly missed babies.

Neither of us ever expected to be inhabiting a world full of dead babies; we were supposed to be playing with our two month old healthy living baby boy right now, blissfully ignorant of this quiet community that we are now a part of. As hard as it is, we realize how important it is to tell our story, to listen to others' stories, and to look at images of others' babies who have passed away.

Friends and strangers alike have thanked us for sharing Julian with them through images and writing. It made me realize what a privilege it is for me to be able to look at a photo of someone else's baby who died. Parents of living children get to show off pictures of their babies at various stages, but people rarely ask parents in our situation to see pictures of our babies. Most of the time, it's because they don't want to upset us, but I have a feeling it's because some people feel it's too morbid. Pregnancy and infant loss is a taboo topic that often goes unacknowledged, leaving parents feeling that they don't matter, their child didn't matter, and that they can no longer share the joys that accompany pregnancy and parenthood like "normal" people. I hope our experience can help to educate others about these issues.

Wednesday, March 02, 2005

Mama's night out

I talked to my mom today. She and her husband had just returned from vacation, and I reached her on her cell phone as she was shopping for the perfect frame in which to place a photo of Julian alongside the poem I had written for him. This reminded me of what I have been going through over the past few months, searching for the perfect stationary, the perfect picture frame, the perfect container for his ashes, the perfect way to commemorate him... What I realized is that each of these actions serve not only as a way for me to remember him, but also as a way to love him.

A friend's mother complimented my blog today, saying how amazing it is that I was able to create something so helpful after such a great loss. All I can say is that this is the only way I am able to continue to mother my son. I need to feel that his life had meaning for my husband and me, and that our hopes and dreams for him were not in vain.

I went to a support group meeting tonight. We had been to a previous support group that turned out to be a disaster, but my friend Lorraine found out about another group affiliated with Mount Sinai Hospital, and I decided to try it out. Robert couldn't come with me because of the timing, but I decided to go anyway. It was great--a much better experience than our previous one. Hopefully, Robert will get to attend a meeting of this group at a later date. It was definitely more in line with what I was expecting.

Strangely, Robert and I also experienced our first night "out" tonight. After Robert got off work, and after I left the support group meeting, we met up with our friends and went to the opening of an Off-Broadway show and after-party. It was great fun, but at some point we were talking to a woman whom we would have normally found eccentric and interesting in a New York sort of way, and found that we both wanted to interrupt and tell her about our loss in order to explain our complete lack of interest in what she was saying. We have been amazingly on the same page with all of that has happened. At least we can be thankful that our experience has strengthened our relationship, as opposed to tearing us apart as we understand happens to many couples after a loss such as ours.

How strange it was to be dancing, laughing, and having fun at a time like this. What a different life than what I thought I would be leading at this particular moment. I found myself dancing with a handsome young man, probably gay, and only a few years younger than me. To my surprise, my feelings toward him were more maternal than anything else. Even this experience, although very outside our recent experiences of grief, reminded me of Julian. It made me recall wondering how I would react if Julian were gay. Robert and I always agreed 100% that we would absolutely love him unconditionally, attend PFLAG meetings, and whatever else it took to support our son. We would be his biggest fans, no matter what course his life took.

Needless to say, it takes a little creativity to parent a child who is no longer living, but this blog is my response to those who question Julian's impact on our lives or how we can go on. We go on because we must, and because Julian would have wanted it that way. We go on living and loving Julian in the only way we can--by finding comfort and meaning in the everyday and the mundane, by standing up for what we believe, and by loving each other.