Friday, December 23, 2005

Hang in there, peanut.

So far, so good (phew). New EDD (based on LMP) = 7/30/06.

I am a bird now

In loving memory of Julian Innes Fader (12/20/04 - 12/23/04)

"Still Here" - Jill Scott

I am a boisterous river
I am a mountains story
I am a quiet feeling
I am a fragrant flower
I am a moonlit evening
I am a peaceful night
I am a writers thinking
I am a wealth unfathomed
And if you don’t recognize my presence, I am here
And if you don’t recognize me, I am here
I am a source of power
I am excited journey
I am the rock of patience
I am a whisper singing
I am unbridled freedom
I am the thought from thinking
I am a love unshattered
I am the great orgasm
And if you don’t recognize my presence, I am here
And if you don’t recognize my presence, I am here
And even if you don’t recognize me, I‘m still here
And even if you don’t recognize me
And even if you don’t recognize me, I‘m still here
And even if you don’t recognize me, I am, oh, I’m still here
Even if you don’t recognize me, I’m here, I’m here, I’m here

[The title of this post is taken from one of this year's most powerful albums, by Antony & The Johnsons.]

Tuesday, December 20, 2005

Happy birthday, Julian

Our beautiful son Julian came into the world a year ago on 12/20 at 7:10pm, with a head full of dark hair and beautiful brown eyes. He weighed 6 pounds, 3 ounces,and measured 19 inches long. I spent my whole pregnancy trying to picture what he would look like, but when I met him for the first time, it was likeI had known him for my whole life. It was at the same time the proudest and the saddest moment of my life because I knew that the time I would have with him would be limited. Julian struggled to be with us for 3 days before he died of heart failure caused by dilated cardiomyopathy. He only gave up the fight for his life when my husband and I held him and told him we loved him and that it was okay to let go, that he didn't need to be strong for us.

My husband, Robert and I spent the day together in quiet reflection (slightly distracted by the NYC transit strike). We are so thankful for each other and for the handful of family and friends who did manage to acknowledge Julian on what would have been his first birthday.

Tuesday, December 06, 2005

What not to say to a SPALS mom

I am only 5 1/2 weeks pregnant and already, I have been making a mental list of "What not to say to a subsequently-pregnant-after-a-loss mom." People can be really clueless. In no particular order, here are my new guidelines for how to behave around a SPALS mom such as myself:

1. Don't keep asking a woman who has suffered through pregnancy or infant loss if she is "pregnant yet." Planning a subsequent pregnancy is not exactly a joyous experience (especially when it doesn't happen quickly), and constant inquiries only add to the stress and isolation she feels on a daily basis.

2. If and when she does inform you of her subsequent pregnancy, be happy for her, but not overly celebratory. If she lost a full-term baby, she is bound to feel very vulnerable and anxious during her subsequent pregnancy, and knows too well that a positive pregnancy test doesn't automatically guarantee a successful pregnancy or a live healthy baby at the end of 9 months. She needs your care and support, but not a cheerleader. If you're unsure about the appropriate tone, follow her lead.

3. Don't perceive her new pregnancy as a sign that she has "moved on" or is "over" the baby she lost. She will never be over it, and will probably struggle a great deal with how to celebrate her pregnancy and bond with the new baby, while continuing to grieve for the baby who died.

4. Similarly, if you haven't done such a good job of listening to, supporting, visiting, or staying in touch with her since her baby died, don't take the announcement of the new pregnancy as a signal for you to try to resume your friendship where you left off before she lost her baby, as though you are relieved that she is "normal" and back to her "old self" again. Not only is this a false perception, but she may resent this kind of fair-weather friendship and may even be reluctant to tell you about her pregnancy for fear that you will respond in such a way.

5. Don't assume that she no longer wants to talk about the baby who died. Most SPALS moms love it when you remember their babies, especially (but not only) on anniversaries and holidays.

6. Don't assume that she now wants to hear about other peoples' pregnancies or other peoples' babies. Despite the fact that she is herself pregnant, she may feel very removed from those who have had an easy time of getting pregnant and bringing home a baby. Try to continue to be as sensitive and mindful about what you say to her (and within earshot of her) as you hopefully would have been during the months immediately following the death of her baby.

7. Please do try to keep your feelings about God, religion, etc. to yourself in relation to her pregnancy and/or the baby she lost (i.e., references to "God's will," "God's plan," "angels," or her "faith"). It is possible to offer secular or non-religious responses that sound more sincere and authentic than those that may be meaningless to her, depending upon her beliefs. Otherwise, there is a risk that your truly supportive sentiments may be clouded by religious imagery that she may be offended by if she is an agnostic, atheist, or has a nontheistic worldview.

Wednesday, November 30, 2005

Baby #2, EDD 8/3/06

Something else to be thankful for... Finally, a BFP!

Thursday, November 24, 2005

Giving thanks

We passed on our usual Thanksgiving with friends in favor of hanging out alone together in the city and seeing a movie. I just couldn't bear the idea of being around a bunch of happy people who seem to have everything in the world to be thankful for at the moment. I decided long ago that I didn't want to participate in any sort of holiday celebration this year, especially not the kind that involve the concept of family, generosity, good will, cheer, or the entire month of December.

That being said, I know that I do have a lot to be thankful for. I have an amazing, sensitive, kind, protective, and loving husband, who I wouldn't have made it through this last year without. I have a wonderful mother and stepdad, caring and supportive in-laws, two great cats, dear old friends who have managed to stick around, and treasured new friends who accept me for who I am today. Best of all, I have the joy of remembering the day we welcomed our beautiful son into the world, albeit for a brief time. Lots of people don't get to experience that much.

Sunday, November 06, 2005

Babies Memorial Service

The hospital where Julian was born hosted a bilingual memorial service for babies who died after spending their brief lives there this afternoon at 2pm. I have been experiencing a constant, low-level anxiety all week leading up to this event. I guess I wasn't sure what to expect.

Apart from a few minor annoyances (way too many children, one of whom threw up too near to me; slight lack of organization; unnecessary and offensive opening remarks from the hospital chaplain who compared our collective loss to his golf game [did he really say that?] and claimed to know our pain because he has two children in their twenties [huh?] who were born in the same hospital), the service was very nice.

When we walked in, there was a board with a list of all the babies who had died in the hospital over the past year, as well as a board with photos we had submitted. I think about 50 families attended the service. There was also a program with writings many of the mothers had done for and/or about their children. The service included a few readings, some by parents, some by hospital staff.

One of the NICU nurses read the poem I wrote for Julian, which was quite moving. A woman with a lovely voice sang while her partner accompanied her on the piano. Then there was a candle lighting ceremony in which all the babies' names were read, and the families were invited to come light a candle in honor of their child(ren). The candles were decorated with the name of each baby (see above). Following the candle-lighting ceremony, we went out to the garden to plant bulbs around a tree dedicated in memory of all the NICU babies who didn't get to go home.

It was emotional as well as life-affirming to see all the children, the surviving siblings, enthusiastically plunging their hands into the soil. Of course, the downside is that we were also saddened by the fact that most of the other families had one or more living children, and we do not...

We drove home listening to Rufus Wainwright.

The Rules

[Borrowed from GabesMama. To see the complete list, go here.]

Rule 1: This is the mamma of all rules. If you could just do this one tiny thing, then I would be happy: don't get pregnant.
Rule 2: Almost no one will follow rule 1, so I will proceed from here.
Rule 3: Don't get pregnant two weeks after my son's funeral.
Rule 4: Don't show your amazingly beautiful belly off.
Rule 5: Don't tell anyone at work if you work in my office.
Rule 6: Don't have a shower of any kind.
Rule 7: Don't allow your co-workers to talk about how easy or hard they heard your labor was.
Rule 8: Don't e-mail your baby pictures to your co-workers so that they may get circulated around the office.
Rule 9: Don't put up pictures in your cube of your baby, and don't bring your baby into the office!
Rule 10: Don't have a baby with brown hair and brown eyes, that just hurts.

Sunday, October 16, 2005

Cross-stitch from Rosemary

A very beautiful and touching cross-stitch by my sister-in-law, Rosemary, from the UK, using words from a poem I wrote for Julian.

Thursday, October 06, 2005

Requisite celebrity baby rant

Sorry, but I have to take 2 seconds out to rant about the celebrity baby boom. Gwynnie is on #2, Donald Trump's new trophy wife is preggers, there are rumors about Angelina and Brad, Bennifer II is due any day now, and now Katie Holmes and that lunatic, Tom Cruise, are expecting. I take some comfort in the fact that the media gave us all a bit of a reprieve by completely ignoring the birth of the Spears-Federline baby (an obvious snub, since the baby was born via a planned c-section, which had been scheduled months ahead of time), but this is the last straw. Nicole Kidman and Jennifer Aniston must be devastated. And that poor JLo. When's it gonna be her turn? I'm right there with you, 'manita.

Thursday, September 29, 2005

What I'm really thinking

What I'm really thinking, when you're talking to me, thinking, "Gee, she's really holding up well," or "It's been 9 whole months, she probably doesn't want to talk about it," or "She seems to have finally moved on," or "Why can't she just move on?":

My only child is DEAD. You have no idea what HELL this is like.
My child is dead. You have no idea what this is like.
My child is dead.
You have NO idea what this is like.
You have no IDEA what this is like.
No idea.

Wednesday, July 27, 2005

A funny thing happened...

A bunch of us were leaving a monthly support group last night, which happens to be held in a hospital. Some moms, particularly those who gave birth and/or lost their babies in that hospital do not feel comfortable going into the building alone, if at all. Many of us still feel uncomfortable at the sight of babies and pregnant women, and the maternal-fetal medicine unit is a few floors down from where our meetings are held.

On our own, the feelings we each get when faced with a very pregnant woman or a newborn baby usually involve dread, sadness, fear, panic, anger, jealousy, agitation, isolation, and a whole host of other emotions. Well, last night, after just discussing this very thing in our group, we all got on the elevator to leave, the elevator stopped a few floors down, and a whole gang of big pregos got on. I say "gang" because it did feel a little bit like the socs vs. the greasers. Somehow, together we were able to laugh. I guess it wasn't funny ha-ha, but funny surreal.

One is silver, the other is...old

I made an observation to my friends on SPALS recently about how the relationships I have with friends I have met or become closer to since Julian was born seem more open and honest. One of the responses I got really struck me. A woman said, "They don't know the old you, so they aren't waiting for her to come back."

I find that some family members and old friends have an expectation that I am going to get better or get over my son so that they can relate to me again. This has been a real frustration for me. I would like to think that I would be a little more sensitive and mindful, even if I had not had this experience. What some people fail to realize is, having my son has changed me forever, for better and for worse. This is who I am now, this is my reality, this is my new "normal."

Tuesday, July 26, 2005

If I could dream you awake...

I had a dream about my little boy last night. Immediately after he died, I had dreams that were more like anxiety-induced nightmares in which my mind replayed scenes from his birth and death over and over again, trying to make sense of the reality that he was gone.

Last night's dream was different. He was not a newborn, but a 7 month old baby, as he would be now. In my dream, he still had cardiomyopathy, but he didn't die, and he was home with us growing big and strong. I kept taking photos of him in his crib, which was probably influenced by something I had been reading about vintage memorial photography in my waking life. When I picked him up, I felt like I could really smell and feel him. He kept saying "ya-ya."

The dream didn't upset me at first, but as the day has gone by, I guess it has made me a little sad. Some people would believe that this was his way of telling me that he's okay now, although his spirit has taken a different form. I'm not sure what to believe. I just miss him. No matter what anyone says, I do feel that I continue to have a relationship with him on some level. I guess I'm just trying to figure out what that is.

Monday, July 25, 2005

Tattoos for Julian

Robert and I got tattooed during our recent visit to my hometown during the Ann Arbor Art Fair. The experience was emotional and painful, yet pleasurable and healing at the same time. Artwork and tattoos were crafted by the lovely and amazing Jeff Zuck.

Daddy's tattoo

Mommy's tattoo

Sunday, July 03, 2005

July 4th Fireworks

View of 4th of July fireworks from our apartment.

Friday, May 20, 2005

If you've nothing nice to say...

...don't say anything at all. I guess that's why I haven't posted in nearly two months. The response to my blog has been amazing, but realizing that people are looking to me for hopeful and inspiring words is too much pressure right now. I haven't been feeling very full of hope or inspiration lately.

Being back at work is not the greatest thing with no baby to go home to, to make all the stress worthwhile. I'm not as focused as I used to be, and I hardly have any memory of anything that happened before Julian was born. My son, who lived and breathed and was a part of me, is dead. It's hard to feel hopeful about life, or to think of much else, under those circumstances.

My little boy would be 5 months old today. Very few people remember these anniversaries at this point. I feel like I am expected to have "moved on" by now by those who don't understand that grieving the loss of a child is a very non-linear process. Another thing I don't think people realize is that Robert and I are not just sad and feeling sorry for ourselves. We are sad and very sorry for our son, who never got to go outside, laugh, make love, eat strawberries...

I am reminded of this every time I see or hear of a pregnant woman, a couple with a newborn, or a father and son enjoying their lives together, probably never thinking that the worst could happen to them. Because 5 months is a long time to some people, people we know think the worst of our pain is over, and think nothing of casually mentioning other babies to us. I have been dodging acquaintances with babies and small children recently because it's not fair to put myself in the position of being pressured to interact with someone else's baby.

Truth be told, I have no intention of holding a baby that isn't my own anytime in the foreseeable future. I usually know myself very well and can anticipate my responses, but not knowing how I would react to holding another baby makes me very anxious and sad, so for now I feel I'm better off just avoiding the situation altogether.

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.

Monday, February 28, 2005

What not to say to a bereaved parent

Parents who have experienced the loss of a child often feel disoriented, depressed, anxious, angry, distressed, irritable, resentful, and even jealous of others' happiness. Instead of bringing home the "bundle of joy" they were expecting for months, they find themselves with empty arms, living a life much different than what they had been preparing for.

For me, one of the most difficult things to accept in the weeks following Julian's death was my new identity as a mother of a dead child. I was now part of a minority group that I didn't wish to belong to. My body grieved Julian by continuing to lactate despite the fact that he was gone and by continuing to produce "nurturing" hormones that made me want him even more. I paced my apartment in my nightgown, not knowing what to do, because what I was supposed to be doing was caring for my precious little boy.

Instead, we spent the first few weeks without him planning what to do with his remains, going over autopsy reports, arguing with the insurance company, and putting his things away. In my head, I constantly chanted, "I want my baby, I want my baby." I relived my last days of pregnancy and our short time with Julian every night as I fell asleep, and cried every morning when I woke up and realized that it wasn't all just a horrible nightmare. His beautiful face is etched in my memory and I can never forget.

Because the majority of pregnancies result in healthy babies, most people are blissfully unaware of what can go wrong during pregnancy and childbirth, and are therefore ill-equipped to respond to miscarriage, unexpected fetal illness or demise, stillbirth, or infant death. Not knowing what to say to the bereaved can be a source of discomfort, but that discomfort pales in comparison to the distress felt by the parents of a dead child. Grieving parents need compassion, patience, and kindness, and should never be put in the position of having to manage others' discomfort.

Our culture tends to believe that modern medicine is a fix-all solution, yet there are unfortunately many circumstances that are out of our control, despite the most heroic of medical interventions. When we first found out that something was seriously wrong with our son Julian's heart, most of our friends and acquaintances tried to reassure us by reminding us about "medical miracles."

In Julian's case, we were told that heart transplant was his only chance for survival, but that even that would not provide a long-term solution (and that's assuming that a compatible donor heart were available). We were told that transplant was like exchanging one disease process for another, and that the 5 year survival rate was only 50%.

Complications of heart transplants in infants include mental retardation, growth retardation, speech and developmental delays, a lifetime of immunosuppressive drug treatments and doctor's visits, and at least one further heart transplant. Simply put, our chances for bringing home a healthy baby were slim at best. There was nothing anyone could say to change that fact, nor the fact that he died.

From research and experience (yes, I have actually heard these things!), I have come to learn that bereaved parents need compassion and acknowledgement of their child who died, without judgment. While no one can know the right thing to say, the best responses are those that are honest, such as "I don't know what to say, but I'm sorry," or "I feel guilty that I have a healthy baby" if that is how you feel.

It's always better to say what's on your mind than to avoid the person, leading to his or her further sense of social isolation. The following is a list of what NOT to say to someone who has lost a child. If you have lost a child yourself, please feel free to add to this list by contributing a comment.

1. Nothing. Some people choose to say nothing because they aren't sure what to say, they are uncomfortable with death and reminders of their own mortality, they don't want to lose control of their emotions, they don't want to upset a grieving parent, or in rare cases, because they are truly insensitive people (really!). In reality, most bereaved parents welcome any words or acts of kindness, love, and support, as long as they are sincere.

I certainly welcome the opportunity to talk about Julian, and appreciate when others are able to mention his name or ask questions about my labor/delivery, which was one of the proudest moments of my life. I did have a baby, after all. I am a mother, although my child is not with me, and like any mother, I am always thinking of him. There is no right thing to say (arguably, there are wrong things to say, which I will get to later), but to a parent who has lost a child, acknowledging their loss is to acknowledge that the child existed.

In our case, even the Federal government acknowledges that Julian was here! We wouldn't expect any less from our friends, family, or colleagues.

2. "You're young, you can have another baby." This comment, though meant to give the bereaved parent hope for the future, does not acknowledge the importance of the baby who died. It suggests that a future child will be a replacement for the baby who died, rather than a sibling. It also falsely assumes that having another baby will erase the pain of the devastating loss when, chances are, the bereaved parent will never be "over" the baby they lost.

3. "It was God's will," "Everything happens for a reason," "God had another plan," "It was meant to be," or similar sentiment. People will often say these things to a bereaved parent without really thinking about what they are saying. Often, well-meaning outsiders take tragedy and loss as an opportunity to share their faith or to come up with their own explanation for the loss according to their religion, assuming that the grieving parent will share their beliefs. Firstly, not everyone believes in God, and secondly, not all religious people believe in fate or rely upon blind faith.

Personally, I do not choose to believe in a God that plans disasters and tragedies. To some bereaved parents, saying "It was God's will" is like saying that God meant to kill their baby. This is certainly far from comforting. For a thoughtful, in-depth discussion of this issue, I recommend When Bad Things Happen to Good People by Rabbi Harold Kushner.

4. "I know exactly how you feel." Every loss is unique and important, but it's important to try not to compare your experience of the loss of, say, your dog, to the bereaved parents' loss of their baby. My first childhood dog, Tiki, died when I was away at college. I felt I had lost my best friend. I was incredibly sad and cried for weeks. However, the grief that I felt over my dog's death had a beginning and an end. I was incredibly depressed years later in graduate school when my grandmother died and had to request extensions on my coursework. The death of an elderly person, unlike that of a child, however, is expected, and therefore often easier to accept.

Research over the past several decades has consistently shown that the loss of an infant is one of the most stressful events an adult may experience, and that the intensity of the grief experienced by parents following such a devastating loss is significantly higher than that experienced following the loss of a spouse or parent. In addition to the loss of the baby, bereaved parents often feel that they have lost a part of themselves. The loss of a baby also represents a loss of hopes and dreams, a loss of parenthood, a loss of innocence, and to a certain extent, a loss of the joy of pregnancy due to the fear of another loss.

5. "Are you feeling better?" To the grieving parent, this question sounds more like, "Aren't you over that yet?" and implies that grief has a timeline and that you are becoming impatient with the amount of time it is taking for the bereaved parent to "get over" his or her child. Parents never "get over" their children; they work through their grief, but they will never forget the child they lost, who will always be a part of their family.

It may take a great deal longer than you may expect for a bereaved parent to truly feel happy again. Everyday joys are often experienced as bittersweet for a mother or father who wishes she or he could have shared those experiences with the child they lost. A better question to ask is, "How are you?" or "How are you feeling?" These questions are non-judgmental and demonstrate that you are not making assumptions about where you think the bereaved parent should be in his or her grief work.

"My Name" by George Canyon

I'm not usually a fan of country music, but I found out about George Canyon's song, "My Name," through an online support network I'm involved with. Canyon is reported to have written the song for a friend coping with miscarriage and infant loss. The song is particularly powerful as it is written from a child's perspective. Though the lyrics have a slightly religious tone, I found the song and the video very moving--haunting, in fact. The only other song I am aware of that addresses this theme is Eric Clapton's, "Tears in Heaven," which I cannot bear to hear.

View the video online.

Friday, February 25, 2005

Waiting for a friend

Julian's Room

Throughout the majority of my pregnancy, we lived in a one bedroom apartment, so I never got to decorate a real nursery for Julian. We moved into a larger apartment a few days before Julian was born. He was with us in this apartment, but he never got to see his nursery. I decided to go ahead and decorate the nursery rather than to wait for our next child.

Of course, seeing his empty crib makes me a little sad, but I know I would feel even sadder if I hid these things away and pretended that he didn't exist. The new items for the nursery make me happy and the room gives us hope for the future. Our next baby will grow up knowing about his or her brave big brother. For now, though, this is Julian's room.

Thursday, February 24, 2005

Bereavement Resources


AMEND: Aiding Mothers and Fathers Experiencing Neonatal Death
The Compassionate Friends
The Hygeia Foundation, Inc. & Institute for Perinatal Loss
MISS Foundation
SHARE: Pregnancy & Infant Loss Support, Inc.

SPALS: Subsequent Pregnancy After a Loss Support


A Broken Heart Still Beats: After Your Child Dies by Anne McCracken and Mary Semel. Hazelden Publishing & Educational Services, 2000.

Empty Cradle, Broken Heart by Deborah L. Davis. Fulcrum Press, 1996.

Empty Arms: Coping After Miscarriage, Stillbirth and Infant Death by Sherokee Ilse. Wintergreen Press, 2000.

SIDS & Infant Death Survival Guide by Joani Nelson Horchler. SIDS Educational Services, 2003.

Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss by Ann Douglas. Taylor Trade Publishing, 2000.

Parenthood Lost: Healing the Pain after Miscarriage, Stillbirth, and Infant Death by Michael R. Berman. Bergin & Garvey Trade, 2001.

Pregnancy After a Loss: A Guide to Pregnancy After a Miscarriage, Stillbirth or Infant Death by Carol Cirulli Lanham. Berkley Publishing Group, 1999.


American Heart Association
Children's Cardiomyopathy Foundation
March of Dimes
National Heart, Lung, and Blood Institute
National Organization for Rare Disorders (NORD)
The National SIDS/Infant Death Resource Center (NSIDRC)

For Julian

No longer warmed by the presence of you
grounding me, rounding me full of expectation,
abundant with dreams of how you would
make yourself known to the world,
my grief now protects me from the elements.

Friends offer silent prayers
for an end to this sadness,
secretly wishing they could erase
this chapter of our lives.

Forever changed, we are
more selfish, less trusting,
more vulnerable, less hopeful,
but more loving.

Our truth is that we are far better
for having known you.

You were here.

Tuesday, February 22, 2005

I want my baby

Last week I was starting to feel like I was really making progress in my grief work (it really is work to move through this). This week, I feel like I've taken two steps back, and it's only Tuesday. In the weeks since Julian's death, my mind hasn't been focused enough to ever know what day it is. Julian's due date (1/2) came and went, as did the 1 month anniversary of his birth (1/20) and death (1/23), without causing me too much distress.

This week will be two months. Getting through the second month is proving to be more painful than I expected. I am not having as much difficulty sleeping or concentrating as I did during the first month, but I still think about Julian constantly. Losing him was a real shock to my system, on many levels. My body still doesn't seem to know he's gone.

I want my baby. It's not fair.

Monday, February 21, 2005

Hello cruel world

Today is the 40th anniversary of the assassination of Malcolm X. It also happens to be two months and one day since the birth of my son, Julian. These next few days will no doubt be difficult. Julian died 2 months ago this Wednesday.

My mom and me

Having and losing Julian has brought me even closer to my own mother. Julian was her first grandchild. Posted by Hello

Wednesday, January 12, 2005

Drawing by Heather Spears

Drawing of Julian by Heather Spears ( Heather is a Canadian-born published poet and artist who lives in Denmark. She has done amazing drawings of children in crisis, and will work with bereaved parents to create drawings of their children based on photographs and parents' memories, creating lasting, softer images of the child than a photo taken in a medical setting. Posted by Hello

Thursday, January 06, 2005

Birth/death announcement

I designed and printed this birth/death announcement to send to our friends, relatives, and colleagues during the first few weeks after returning from the hospital. I felt that I needed to do something to honor Julian's life, and I wanted to be sure that he was acknowledged by other people. I was, and continue to be, angry, hurt, and frustrated by those who chose to deal with our loss by pretending that it didn't happen or that Julian didn't exist. Many people have told us how much they were moved by the announcement.

Sunday, January 02, 2005

A harsh winter

Another icy view of the Hudson from our apartment. Note the Mega Millions sign. We were told that Julian's condition was statistically rare--a "freak" incident. With those odds, couldn't we have won the lottery instead? Posted by Hello

Saturday, January 01, 2005

A cold, dreary day without Julian

The view from our new apartment on a cold, dreary day without Julian. Posted by Hello