Bevely's Story: Part Four

Many people who suffer unexpected tragedy turn to generosity and giving back as a way of making meaning in their experience. Though many years had passed, I was thrilled to see Bevely at Empty Arms’ 10 year anniversary celebration last May. With her, she had her two little boys and together they made a quilt square and decorated rocks for Jelyna. During that time, we started talking and she told me that she was really interested in giving back and helping other people. I was so glad –  a bilingual woman, Bevely had so much to offer, especially as we began to make our move towards expanding to Baystate. Here, Bev talks about what it’s been like for her to turn her grief into a mission of helping others.

For years, ever since Jelyna passed, I wanted to do something but I didn’t know how or what. So I started going to some of your Empty Arms events, and reconnecting with you – it felt like a calling. And then the opportunity just came up – it felt like it was meant to be. It was the right time, I felt ready. Years ago, I wouldn’t have been ready. Unless I had the support, maybe that would have made me ready. I just want to give back.

The first time I went to a mother’s house and spoke to her it felt weird, but I had to remember: we are women, I’m here to support her. I wanted her to feel what I would have wanted somebody to do for me when Jelyna passed. I let that weird feeling go away, I got up, and I hugged her. She just cried and cried. And I cried with her.

Yes, it brings up memories, but it feels good to be there for somebody and show them that they’re not alone. It brings memories back but it’s in exchange for feeling good while doing something for somebody else.  It’s being able to bring someone else something that you didn’t have.

I told her it’s okay to cry, breaking that silence and that barrier – it’s okay that you feel like this, and I was honest with her – this is how you’re going to feel for a while and it’s okay – I didn’t know what I was going to feel and what it was okay to feel. It seemed like everyone expected me to be over it and I needed her to know that you don’t just get over it. It’s rude to expect someone to get over it – that’s not how you comfort them. You have to accept that they’re going to feel it for years to come.

You’re never the same person after a traumatic event. There’s no such thing as your old self, you have to learn to live with what just happened to you. Even family members who mean well don’t understand – they go on with their lives. For us, we have to almost build a new path – we can’t go on the same path anymore. So helping people, it’ sad – but it’s so rewarding to me, it makes me feel good. Now it’s been 12 years, so of course I’m still sad and I’ll still cry, but it’s easier for me to be a better support. And to show other people that you will get through it with time. You heal.

When I supported the most recent mother, I said look: I know how you feel, it will get better but it will never go away. You’ll always have that little part of you –  it will never be filled. It’s OK – years from now, you keep her memory alive, and it’s OK if you cry. Just because it’s been 5, 10 years it’s still a loss, you’ll still remember that person. You’ll function, like you’re supposed to- but it doesn’t mean it’s not OK to mourn. Others will move on with their lives, but they don’t realize the impact this has on somebody. It’s true – you’ll always mourn your baby.

That mother was talking about the baby’s stuff, and how hard it was to think about getting rid of stuff – I was like DON’T. If you want to hold onto it, you can! Make a box and hold onto it! And her family expected her to get rid of everything, and I helped her to know she could keep things. I said, get a box, create something and hang it on the wall – you don’t have to hide her, you don’t have to hide her stuff. She really liked that, I think. She was explaining how she had the baby’s name up and her son had asked her to leave it – I said, then leave it! She’s a part of your family, she’ll always be your daughter, always be the sister. I was encouraging her to let people see the baby. And a lot of people need that encouragement because society teaches us to hide people after they die. When you have a child and you lose them, your feelings don’t go out the window. She’s always going to be part of your family so keep her part of your family. Keep her alive somehow. That’s what I try to do.

I understand how this works, because I didn’t know how to do this.  I needed advice and guidance – I would never have known what to do except for the things people told me I could do. That’s why I think Empty Arms is such an awesome and amazing group. The awareness is not there in the general public, there is no other support, Where are these women going to get the support and the OK and know what they can and can’t do? I wish I had the support at the time. And now I’m happy to help and support it in any way, and want to continue to be involved in as many ways as I can!

Bevely's Story: Part Three

Knowing Empty Arms is there is something that Pioneer Valley families can return to again and again. While there are many families who use Empty Arms daily or weekly in the beginning, some only cross paths with us briefly, and yet our impact can still be significant. I often share this story with the people who are training to become peer companions to remind them that we can never measure our impact by how often we see a family return:

Many years ago, I was called to Cooley Dickinson to visit a family who had delivered their baby girl at just shy of 18 weeks. They had requested my presence, but when I entered the room, which was filled with siblings, loving family members, grandparents and friends, I was met mostly with stares. When I offered the menu of what Empty Arms could offer in terms of support, the mother very politely thanked me for coming and let me know that she’d call me if she needed anything. I left, thinking that the visit had been a failure, and worrying that I’d invaded their privacy. The next day, I returned and took photos and did tiny hand and foot casts of their tiny baby. The mother sent me a lovely text thanking me for those mementos, and I never heard from her again… until about 14 months later. That’s when I received a lovely note sharing with me the news of their new baby girl, born healthy and robust, and thanking me for all that I had done. “You were there for us at such a hard time and you were such a source of support for us”, the mother wrote. Who, me? I couldn’t believe it. I felt like I hadn’t supported them at all. But what this mother pointed out is the power of knowing that the resource is there if you need it. She may not have called, but it brought her great comfort to know we were there. Our presence, even though it was brief, made a difference. I have always remembered this story.

In this blog post, Bevely will talk about the ways in which she returned to Empty Arms after years had passed. Many families have come back to us after years, and it’s a privilege for us to be there for their life journeys.

Carol: What do you think drew you back to get involved?

Bev: I should have never left, first of all! I was trying to figure things out on my own, but when I got pregnant with my first son, Jon Carlos (2009), I thought about going back, but I felt better about it and my husband was very supportive. When I got pregnant with the second one, Jovani, (2012), I was so scared and worried. I don’t know what happened – I was scared and worried, I started having memories, I felt the emptiness again. I remembered looking up Empty Arms and realizing you guys had classes for somebody like me –  I was like OMG – it was meant to be!

I remember reaching out. I only went to 2-3 but then I went into birth a month early. It helped me tremendously –  it made me feel like I had people supporting me through the pregnancy. Nobody understood me! My family was like, you already had a kid and you were fine, so what are you so worried about? It made me feel like I’m not crazy, it’s normal for me to be feeling like this, and it’s OK. I went into labor early,  because I was having complications, everything was fine. He was just really colicky! It was the hardest thing ever.

Even after him it was hard –  because at a certain age, newborn age, with the hat on, both boys looked like Jelyna. So for both of them I went through a period where I was down, I’d cry and let it out. Especially the last one looked so much like her, it was so hard. For the first time ever, it was hard for family members. My sister saw what I saw and it was hard for her, too.

Honestly, when he was born, the pediatrician came in and told me that if it wasn’t for my doctor and her call, he wouldn’t be here today. I’m very intuitive, I think there was a reason I was so anxious. I didn’t feel like the doctors took me seriously – they thought I was anxious, but I was in labor. They had to give me a shot and stop my labor. The doctor had me come every single week. Every friday at my lunch break I had an ultrasound and a non-stress test.

That Friday, the ultrasound the lady did not like what she was seeing. When she got concerned, because he would not move, when she said we need to see the doctor, I can’t even describe how I felt. Then they said you’re having this baby today. I was crying and crying, I was so afraid. It’s funny because the doctor I avoided the whole pregnancy –  the one who told me about Jelyna – she was there to deliver my baby. She was scared, and I was scared. When he was born he had something wrapped around his leg (an amniotic band). The doctor at delivery said you have to commend your doctor for knowing he needed to come out. Imagine all that! I was a mess! But I knew something wasn’t right. People should listen to us women!

I’m so happy that new doctor came in and listened to me and took me seriously. If I hadn’t been getting checked every week, how would we have known? It helped going to those meetings because I was a mess to begin with! It made me not feel crazy. People, even the doctor, were like, you already had a healthy baby – what’s the problem? Why don’t people understand this?  I’m scared! I didn’t think there was a right or wrong to the situation. How dare people say that to people like us! That fear is always deep down in your mind whether you like it or not – it’s reality to us. It’s not a fear in our mind, it’s reality. This could happen.

Bevely's Story: Part Two

Coping with the early days and months can be the hardest part of loss. Often parents feel as if nobody understands, and that feeling of being misunderstood can prevent them from being present in their normal, daily routines even many months down the road. At Empty Arms, we’re able to structure for each family a network of support that feels right to them: whether that’s support groups, therapists, working with their family members, communicating with medical professionals, or setting up individual peer support. We have seen, over and over again, that when we offer families safe spaces to be present with their story, to honor their grief and move forward with healing at their own pace, they are much better off in other areas of their lives. It’s an honor to provide this space.

Carol:  What were the hardest parts in the beginning? What memories still stick with you?

Bev: Giving her back that second day – my family left and I had her all day with me. I didn’t know how to say – take her. How can you determine how you are ready? I should have just stayed with her until I left the hospital, but I felt like I was on a time limit. I felt rushed, like I had to give her back. So saying my goodbye, and letting them take her, that was the hardest thing. Then, going home to a house with all her stuff there, and still with a belly and no baby when I went home, reality struck. I don’t have a baby and I’m supposed to have a baby. I think it hit even harder when I got home. You go home empty, and you feel so empty and lost.

Carol: Did the people in your life understand?

Bev: Honestly I did not feel like anyone understood. I wanted to be alone, but I did not want to be alone at the same time. I remember talking on the phone every day, all day with my mother in Florida and occasionally my sisters. They were the only ones who comforted me, and all they did was listen! I needed them to listen. They did not know how I felt, so all I needed was for people to listen. Everyone else was saying, oh I’m sorry, oh I understand, but they did not know how I felt. But the nurses in the hospital, they referred me to a therapist, who used to work for Cooley, I contacted her. And I got the information about the meetings at Cooley Dickinson  (referring to Empty Arms).

I waited, and that’s my regret. I waited to get help, and when I finally went, I realized wow – now I feel I belong. Because I felt like these people truly understand how I feel. So if they say, I know how you feel  – it’s comforting because I know they truly feel that.

But I knew where to go when I needed help. It’s my culture – it’s how I grew up. It’s hard for me to express my feelings. Now I know it’s OK to seek help. I’m so glad Empty Arms was always there and never said no. I could come back every single time I needed Empty Arms. I’m grateful  – you guys helped me tremendously. You’ve made an indent in my life, just being there.

Carol: Do you think it would have made a difference if you had a companion?

Bev: I honestly truly believe that if Empty Arms had been there when I lost my baby and explained to me what was going on it would have made a huge difference with everything. I didn’t know anything  – I had never heard of a stillborn! I didn’t know anything about what I was supposed to do. If I had support with me it would have helped me to understand what I was going through. It took me such a long time to heal, and it was basically on my own. And then with the groups that I did go to, and the therapist, it made it okay to feel the way I felt. If I had support to say it was okay to feel those things, to guide me to recuperate, it would have made a big difference. You have this blow, and your sitting there broken and alone, and if I had the support that we give to everybody now –  it would have made a huge difference. I got depressed, I broke up with the baby’s father, I started drinking – I never drink – for almost a year, I drank every single day. With support I would have been completely different. I lived in Greenfield all by myself. After the funeral they were back to their lives, but I wasn’t. People go right back to their normal lives and don’t realize that I’m still not OK. And, my partner wasn’t supportive. He left me home and went back to work. That’s why I was calling my mom all day every day. I was alone. If I had somebody there to help me and support me, lives would have been different. I would have been able to heal quickly. It took many years, many years.

The way I started coping was telling my story again and again. It has helped me heal. I’m pretty good talking without crying now!

Bevely's Story: Part One

This is the first in a series of four pieces about Bevely Gonzalez. I met Bevely for the first time several years after the loss of her second daughter, Jelyna, who was stillborn in 2006. Over the years, Bevely kept disappearing, and then showing up. In 2012, at a Subsequent Choices meeting, there she was. Then again in 2017 at our 10 year anniversary party, we reconnected.

When we spoke at the party, Bevely was effusive about how important Empty Arms had been to her in her journey of healing. As she stood there, in the bright light of the party, her two young sons running around at her feet, I remembered the woman who had sat in the chair in the meetings years before. Here before me was a new version, one who remained deeply connected to her past, but who flourished in the present. Bev was a beautiful example of a person who had not just survived, but flourished after her loss.

Not two days later, I was buried in my office, deep in a search for the best way to develop meaningful services for Spanish speaking women who needed our services. Hospital interpreters would not even come close—if our goal was to offer a peer, the support needed to be offered by a peer. Suddenly, I thought of Bev. Could she help us out?

I emailed her the next day, cautiously suggesting that we might be looking for people to help to support others in Hampden county, and that we were specifically searching for bilingual support. Within minutes, an effusive, enthusiastic reply was in my inbox. Bev was in!

It has been beyond a pleasure to have  Bev join our team. She carries with her years of experience, a bright sense of humor, and a frank realism about the challenges that life can bring. This winter, I sat down with Bev and interviewed her, in the hopes of bringing her story to our community. It is a story of a mother who, determined not to be alone in her isolating journey of grief, sought out help again and again. And it is the story of that same mother who has been able to transform her own sadness into an energy that can help to hold others afloat in their darkest moments.

Thank you, Bevely, for offering yourself so unconditionally to the woman and families who have benefitted so deeply from your support. Empty Arms is grateful to have you as part of our team, and it’s my hope that your words, which will be shared in four parts over the next few weeks, will touch lives as you personally demonstrate the power of friendship and community in the face of a very difficult experience. - Carol

Post #1: Bevely’s story.

It was 2006, and my daughter Elyssa was only five years old, just shy of six. I just remember, we were very excited, we had planned for our new baby and we were looking forward to her. Then, I got into a minor fender bender – someone hit us from behind. I didn’t pay any mind to it, we went to the hospital and checked her and she was fine. Then, two weeks later, I noticed that she wasn’t moving anymore, and it felt like my stomach had gone down. I remember calling the doctor and asking about it, telling them that things looked smaller and that I hadn’t felt her move. They told me the normal things, she’s probably growing, and it’s up to you if you want to come in or not. So I waited until my appointment.

It was a nice, energetic Northampton doctor, she didn’t have any concerns. And I was there like so concerned, so concerned, so concerned! She almost let me go without checking the heartbeat. But I asked her, and she got the doppler, and she was looking, and looking, and looking. She got nothing, so she put me in the other room to check with ultrasound. I just started crying, because deep down inside I knew something was wrong. I didn’t want to look at the ultrasound, because when I did glance at it nothing was moving, and I knew it was bad. I looked at her face, and I knew something was terribly wrong. She went from being so happy and energetic to being flushed and her eyes were watery, she couldn’t even talk. There was silence –  which felt like for a long time. It was very silent, nobody spoke.

Finally, she cleared her throat and with a voice where you could tell she wanted to cry, her voice was cracky, she said, “I’m terribly concerned, is there any way you call  someone to come be with you? I don’t want you driving. I need a doctor to come and look at this, and I need the ultrasound technician to come in.”

I had to wait an hour. She closed everything up and said to call someone to be with me. I tried to call the father, but my aunt and my sister were nearby, so they came and picked me up. It was horrible because I was crying, but they were saying “Everything is going to be okay.” They didn’t understand how I felt, and how I knew something was wrong. They were so ignorant to the situation – they didn’t know what was going on and they wanted to think I was overreacting. And that made me cry more, and I remember yelling at them, saying, “You’re not understanding, there’s something wrong!” I made them bring me back to the office.

I was on the phone, trying to call the father. I got ahold of a different aunt, who had to drive to my house to pick the father up to bring him to Northampton. I called my mom, I was crying, I called my best friend. I was non-stop crying, I knew deep down inside something was wrong. That hour seemed forever. So I waited, and when the baby’s father came, they brought us into the room. The ultrasound tech was there and she did another ultrasound. She didn’t say anything, and told me the doctor would talk to me. They took me into another room, then the doctor came in and told me there was no longer a heartbeat.

It was a long wait to find out something that I already knew.

I was shocked, confused. I’d’ never heard of a stillborn before, I didn’t know that was possible. I wondered, how would they would get her out of me? The doctor told me I’d go to the hospital and they’d induce me, and I was like what!! I’m going to do what? She told me I could go home to take it all in, or go straight to the hospital. I felt like she was crazy – why would I want to go home? I was so scared!

So we went straight to the hospital, and I sat around for hours crying. I’ve never cried so much in my life. Nurse after nurse was coming in trying to speak to me, trying to make me feel better, trying to relate to me. At this point, I just didn’t care. I wanted to be alone.

When the doctor came in and started prepping me, I realized I had already started going into labor. I had my grandmother and another aunt and my uncle come and visit me. They were supporting me, and talking to me. My mom was in Florida so she couldn’t support me. The baby’s father didn’t say nothing – he was in shock, too, so we didn’t say much. I felt pressure  while we were talking, so I said go get the doctor – and she was coming out.

So she just came out – and it was so shocking at first, they put her on top of me, and I was so scared. You don’t know what to expect. I realized she looked so much like a perfect little baby – I wondered what could have gone wrong? I held her for a while, and then I called my sister and told my sister to bring my daughter Elyssa in so she could meet her. She came, I let her hold her. It was very emotional. We just cried a lot. My grandma held her, she cried so much I thought she was going to have a heart attack. My aunt held her, I had support there with me. It was just hard. I remember holding her for hours, and looking at her, at her hands and her feet, trying to figure out who she looked like. I remember I was exhausted. I was so drained. I just told the nurse to take her – I didn’t want them to take her, but I was so physically and mentally exhausted that I told them to take her.

I passed out for a while. And then the next day, I remember getting up and I had family come visit –  another uncle, and the baby’s other grandmother. I still felt the same. I was crying and crying all day, and one of the nurses realized I had more family from afar coming to visit. She asked me if I wanted to see the baby again. I was so shocked – I didn’t realize I could see her again. So I said yes, and they brought her back. She looked different to me, though. She looked even more like a normal baby. It was weird. She was wrapped in a blanket, with a hat on. My daughter came again. Even my nieces came.

I remember the priest coming and I remember asking, what do I do? Do I baptize her? He said no, we don’t have to –  she wasn’t born into sin – she is a pure angel. He said the church would pay for the funeral costs, which made me cry, I was so grateful for their help. I was so naive – I didn’t know I would be planning a funeral. I was in so much shock. Shock is the only word to describe it.

Every March comes by and you feel the sadness – but you just keep trooping through it. It’s been 12 years, but it’s still there. I tell people all the time – my oldest is going to be 18 – I would’ve had a little 12 year old as well. I work with kids now, there are a lot of girls who are like 11, they randomly give me hugs and I can’t help but think, wow, I would’ve had somebody around this age doing that. I’ve been fine all month, then some old friends brought it up. My friend was crying, and I was OK. She just kept wanting to talk about it, so then we all got emotional! She told me that she had a miscarriage, and how hard it was. So it was therapeutic for her, and for me to support her...


Bev’s story will continue in the next post.

A Beginning at Mercy

Teaching is one of the most powerful things I do. When I’m faced with an audience of nurses, midwives, or other birth professionals, I have the unique opportunity to communicate the wisdom of those who have already walked the road of loss to those who will be present when another family begins this most difficult journey. I’m mindful to always present as a collaborator, and not expert: it’s important that each and every professional I reach sees Empty Arms as a resource and a partner in caring for the bereaved. It’s always my goal to make trainings relaxed and fun, and I work on a number of levels to invite professionals to settle into a conversation about what is usually considered one of the most stressful topics in the birthplace.

Carol teaching.jpg

Last week, I was invited to Mercy Medical Center in Springfield to offer a preliminary introduction to our Peer Companion Program, which we hope to implement there. The new Nurse Manager at Mercy, Jennifer LaCasse,  has a history with Empty Arms through her former position at Cooley Dickinson, and she deeply supports our work. Jen asked me to come to Mercy to introduce the Companion Program and give the nurses, especially the new ones, a sense of what to expect when a loss takes place.

When I’m teaching, I always like to assess what information participants walk in the door with. It’s helpful for me, but it’s also very helpful for them to activate what already exists in their minds when they think about loss. So before I began to speak, I asked each nurse to write on an index card what first came to mind when they imagined themselves caring for a family whose baby had died. Each nurse took a green index card and scrawled on it with a black pen, and they handed them to the front.

These nurses, you might imagine, would have an array of concerns about working with a family whose baby has died. They may have received some training in nursing school about what to expect and how to proceed, or they may have received none. I glanced through the cards and smiled to myself as I read the following:

What do I say to grieving parents?”

“What do I say?”

“I don’t know what to say.”
“I worry about saying the wrong things- I would not want to further upset the patient or family”

“I’m afraid I won’t know what to say to comfort them. I don’t want to make things more difficult for them”

“I’m afraid of saying the wrong thing”

It was clear that the greatest fears that nurses had was simple interacting with bereaved parents. Who best then, to teach them, than a parent herself who will force them to look at her in the eye, who will talk about the difficult journey, and make it real?

So I began to talk. How do you offer a crash course in bereavement care, you may wonder? What recipe card could you possibly hand off to a nurse that would offer a step-by-step guide on how to care for a person whose baby has just died? The answer is, of course, that you can’t. Each family, and each individual, is different. Everyone carries a different story, a different history, and a different future. The only thing that is consistent among each and every family that we care for is that they all need someone they can trust, who can take care of them with kindness and compassion, and who can teach them about what people often find helpful when they find themselves in such a terrible situation. While much of nursing care can indeed be charted on a checklist, bereavement care is often about stepping out of our scrubs and into our most human shoes and offering a kind, listening ear, and guiding a family with what knowledge we have.

Through my own words, which carry my own story of loss and the stories of countless other families who have sat around the circle in Empty Arms groups, I spoke of the strong emotions that surround a person when their baby has died. Beyond sadness and grief, I described the guilt and shame and blame that often surface. I dove into the utter helplessness that families often experience, and tried to help the nurses to imagine what it would be like to be offered options when you aren’t sure what either of the choices mean. Using clear, true examples, I was able to paint a picture for them of what this moment might feel like to a family. I helped them to think through what would be right to say, and what would not feel helpful to a family. We brainstormed what the perspective might feel like to a parent, and what might feel most helpful at that time.

Overall, I encouraged them to adopt a mentality of partnering and compassion. With each family I work with, I say out loud:

I want to help you, but I’m not sure how to do that. I’m going to do the best that I can to say the right thing and do what helps you, and I trust that you will tell me if you’re ever uncomfortable with something I say or do.”

With these words, I clearly communicate my intent to help. Every nurse that serves the bereaved can also present him or herself as a vulnerable human who is trying to do the right thing. We can all surround every statement and deed that follows that statement with our intention to help and care. And then, no matter what we say, our words can be coated with that intention.

I took lots of questions from the nurses, including what to expect a baby to look like, whether it was okay to cry, and how to organize photographers. At the end, I invited them to offer one more note card’s worth of feedback to me on the lesson if they chose.

They filed out, their 3:00 shift about to begin, and I was left hoping I’d offered them something they would use. After, I read from the following:

“I found it exceedingly helpful for you to talk about the different emotional levels that parents may go through. I also really appreciated the discussion of the humanization and normalization of the process.”

“It was so helpful to hear from you how to direct conversation with a family about their options”.

“It is so helpful to know that there’s someone I can reach out to- to help not only the parents but to guide me as a nurse, as well.”

I am so grateful that we are stretching our fingers south and will hopefully be building a strong presence at Mercy in the months to come.

Zady's Strength

It would be hard to forget the story of little Zady. We introduced you to this beautiful family in the spring. In March of 2016, her mother, Yahayra, welcomed Empty Arms into her life and allowed us to walk with her as she awaited her daughter’s birth. Zady had anencephaly, a condition in which the brain fails to develop, and she would inevitably die shortly after birth. As Empty Arms companions and photographers, we were honored to be part of Yahayra’s pregnancy, and witness Zady’s birth and brief life here on earth. With her family, Empty Arms was able to help plan and fund a meaningful funeral and beautiful burial.

Yahayra and I have been in continual contact since Zady’s birth last April, but there was one last special delivery that had to be made. Several weeks before Zady’s birth, I arranged for a local doula to create a plaster belly cast of Yahayra’s pregnant belly. One cold, snowy afternoon last March, five of us gathered around her with tubs of vaseline to protect her skin and long, sticky white straps of plaster casting, surrounded her with love and creativity. We laughed as baby Zady poked and kicked the cast from the inside. At the end, the doula took the cast home with her to finish stabilizing the plaster and then handed it off to a local artist (see below), who had taken the summer to paint it with a beautiful mural. Finally, in October, the cast was ready.

After a drive up to Greenfield to get the cast, I brought the cast along with a box full of photographs I had taken to Holyoke, where Yahayra lives. She was waiting for me outside, sitting on some steps, and my heart almost leapt to see her. I could not wait to see her reaction to this beautiful piece of art. We hurried inside with the big box.

  Doula:  Karen Kurtigan  Artist:  Cindy Kurtigan

Doula: Karen Kurtigan
Artist: Cindy Kurtigan

Yahayra covered her hands with her face when we got inside. “I can’t look- you open it!” she cried from behind spread fingers. Her bright blue eyes were laughing with anticipation. I brought the cast slowly out of the box and she lit up with joy. She lifted the cast and placed it right back where it had been, re-forming the body that she once had with Zady on the inside. It was a glorious moment.

After sharing the cast and all the photos with her mother and a friend, I offered to take Yahayra out to lunch before I headed home. She gladly accepted, and as we walked to the car, she mentioned again to me that she still had not been to the cemetery since the funeral. It was too emotionally difficult.

Moments after I began to drive, she suddenly grabbed my arm and fixed me with a piercing stare of her blue eyes. “Let’s go to the cemetery right now,” she said. And of course, we went.

Two hours later we were still there, lying on the warm grass under crimson and orange maples, our fingers tracing the lettering on Zady’s pink granite headstone. Yahayra had never even seen the headstone, and as we lay there, Zady's father joined us and we talked all afternoon. We re-lived the moments right after Zady’s birth, when we all felt such visceral relief that she had survived the birth and was mewling in her mother’s arms. We re-lived the funeral, and the people who had come to offer support. We re-lived the agony of knowing you’d never see your baby again. It may sound strange to say that an afternoon spent lying on a baby’s gravesite was one of the most powerful and beautiful ones I’ve had, but it was.

Yahayra will say that her relationship with her companions was life changing, but we would say the same. Each family that we work with changes us in some way. For many of our Peer Companion families, we meet them after their baby has passed away. We only know them in the throes of grief. Yahayra's birth story was different. We knew Zady was coming; we were able hold space with Yahayra in the hospital as she prepared for her daughter's birth and death. We were able to gather resources for her, professional photographers ready for whatever she needed. When Yahayra requested a belly cast, we were able to find a local doula willing to lend her services, and a local artist honored to decorate it. When Yaharya felt overwhelmed by the cost of a headstone and creating the funeral service she envisioned for her daughter, we started a GoFundMe campaign, and ensured Zady would have the memorial she deserved. Our companionship with Yaharya will stay with us always, creating a long-lasting and beautiful bond. In her short, but important life, Zady showed us the strength of our community, and importance of holding space for one another. 

I am the ocean.

Recently, a friend sent me a link to this podcast. It took me a few days to follow the link and listen, but when I did, the rest of the world around me fell silent. It was a beautiful, compelling story of a family who was able to intentionally create true meaning in the short life of their son, Thomas, in a most unexpected way. I truly encourage you to listen to this podcast, which is about 20 minutes long, when you can carve out a few moments for thinking. I listened while I folded laundry and was sucked into this family's story and the unusual places where they found their son's life impacting others. 

Most profound for me were the words of the mother, Sarah, towards the end of the podcast. After exploring a number of medical laboratories where Thomas's various organs had been donated, Sarah had this to say: 

(After the visits with these offices and providers) "I started feeling that these were Thomas’s colleagues and co-workers and he was a valuable partner in this important research that was being done. 

And I felt an even more fundamental shift- almost like, I had felt like I was a boat on an ocean that was like rocky, and choppy with waves. And I’ve had this feeling like, I’m not the boat, I’m the ocean. Like the decisions that I make are changing other people, as opposed to just, I’m a boat being slapped with waves all the time. It has made me feel powerful. "

What beauty I found in those words: in that thought, that perhaps, at some point, we can all find a point at which we feel less helpless, less controlled by our grief, and more like part of something bigger. Unpredictable, yes, and rocky at times, but also capable and strong. 

Thank you, Sarah. 

Day 9, TLCF

I'm here at Turkey Land Cove, gifted with endless hours of time to think, discover myself, and create. There's no doubt I've learned much about myself during the past 9 days I've been here. It's been over 12 years since I've been by myself and as many of us know, there's no better way to learn about what we do every day than to go somewhere else. 

I imagined, before coming out here, that I might spend hours revisiting years past, connecting to my own identity as a bereaved parent. Instead, I've poured myself into my work: creating for Empty Arms. I imagine perhaps this is because this is the way I've reinvented myself as a bereaved parent. I've taken that energy, once expended on planting flowers in Charlotte's memory garden and blogging furiously about my loss, and turned it into outward work. I have given her life purpose, and my motherhood purpose. 

But that is not to say that there is not an unhealed part of me, because there certainly is, and there always will be. When I picture the wound that is Charlotte's loss, it's the wound from a week- old burn: shiny and smooth, but still red and angry. Graze that spot against anything and it could open easily, the pain fierce. I carry that wound tenderly, careful not to disturb its edges. I've learned well over the years. 

At night here, it is silent, a drastic difference from my home in Westhampton, where the river roars outside my window and cars pass with regularity. Here, the sliding doors to my bedroom remain open at night, and while on warmer nights the frogs call to one another, some nights it is purely silent. I have learned to sleep alone here, something that took me about five nights to accomplish, and now that I sleep, I dream. I dream deeply and meaningfully. Last night, it was this. 

 My beautiful bedroom overlooking Great Edgartown Pond

My beautiful bedroom overlooking Great Edgartown Pond

I am with a therapist, a woman in her fifties, with round glasses and bobbed hair. She is warm and kind, and as we walk into her office, she offers me a seat at the low, round table. The chairs are molded plastic, the kind you'd see in a kindergarten room. I sit, and as I ease down, I am filled with relief that I am finally here. Here, with a woman I somehow trust, and she will listen to me. I feel anxious to talk to her because I know that I need her to understand. I need her to understand how this experience drowns you, how it colors every single thread in the fabric of your life, I need her to understand how inescapable it is. I'm not sure what the intended focus of my therapy is, but somehow I know this is what I need to communicate to her. 

I'm so glad to be in therapy. I know I've needed this. I can feel myself sinking into the chair, ready to ease into the experience of sharing myself and learning about myself. But then she says something, and I'm standing up, and I'm pacing around the room. I'm looking at her while I'm walking, and I'm telling her this: I think I thought of Charlotte once every minute for at least the first four years. I'm not kidding. And I had three new babies during that time, I tell her, even though I know this is not true. I am exaggerating because I want her to believe me, to see that new babies do not erase those who are gone. I tell her then that even now, 13 years later, I would be surprised if ever an hour has passed where a thought of either that baby, or the aftermath of her death, or my wounded identity, has not crept into my thought. I'm trying to make her understand. 

And then, it's over. People are walking in. Suddenly this is a school, it's a classroom, and it's time for me to leave this room and gather my living children, who are waiting outside. I'm thrust back into the busy-ness of my daily life, and I'm not sure she understood. I'm not sure I was validated. I'm not sure she believed me. 

Is this what my life is now? An unconscious desire to advertise what roils inside me: a loss so incomprehensible that I wouldn't be able to get someone to understand its depth even if I tried? Is this dream describing perfectly what happens when I start to contemplate my loss, that life interrupts and gets in the way? Is it communicating to me my subconscious wish that all of my friends, many of whom did not know me at the time of Charlotte's birth and death, would somehow understand the depth of what I've experienced and look upon my life with deep reverence? 

And then I take the step back, and I think about those who have survived war, and those whose personal losses are far more numerous and complicated than my own. And I must remind myself that my own dear baby's death was the one that was the most important to me, and I have a right to feel the need to be seen. I have a right to still be reeling, recovering, and trying to figure out what this means, even now, even 13 years and 23 days later. 

On Teaching.

I used to be a teacher. Way back, when I was "passing the time until I could have a baby". As a young, enthusiastic post-grad, I got a fellowship to Smith College, was handed my Master's degree. I went off to teach kindergarten at a local private school. It was a beautiful way to pass the time.

How I adored tying those shoelaces, blowing noses, and getting hugs and kisses every day from those sweet little faces. I did drink in the challenge of teaching children the mysteries of decoding text and exploring unfolding monarch butterflies, but most of all, I just wanted to nurture them. I wanted to hold them and settle them and ground them in the world. I think what I really wanted to do was mother them.

And then, only a few years in, we decided, to heck with it. Let's just have a baby. And we did. My kindergarten class watched as my belly got bigger, and bigger, and bigger. They clustered around my ultrasound photos and helped me choose names. A few days before my due date, we all gathered around a huge cake to celebrate, and I cried when I said goodbye to them. 

I'm sure not a single one of them will ever forget that their kindergarten teacher's baby died. But she did, and strange as it was, I crept back into the school the next fall. This time, the children held me. They settled me and honored me with simple phrases such as, "You must feel really sad", and "Charlotte was really cute." Their honesty taught me so much. They were the only people in my life who did not expect to get the "old me" back. They accepted that something was changed, and they thoughtfully explored what things were like for me. They asked questions that would have sounded shocking coming from the mouth of an adult, but they were the questions that I longed to answer. I was grateful to go to work every day. 

Those little children shepherded me through that next year, and through my pregnancy with Liam, with their honesty and their love and their small, wet kisses and sticky, dirty fingers. I could never appreciate anyone more than I did those children, that year. Those children represented the truth of what my life had become. I knew they had so much to teach me.  

And now I am back to teaching, in my own way. It has become one of my fiercest passions to work with the community of caregivers who will one day be faced with a frozen-faced mother who is learning that she will never take her baby home. It's become a hunger for me to determine what tools I can possibly provide these caregivers with so that they will be able, like my students, to lovingly but thoughtfully take someone by the hand and speak honest, true words in the face of an unthinkable tragedy. Those children taught me so much. And I'm trying to pass along their legacy. 

I was pleased, then, to receive an email recently in response to a small class I offered to a group of aspiring midwives. 

I just wanted to write to thank you so much for sharing with us today. I feel so honored to have had the opportunity to share a space with you. You were filled with so much wisdom and honesty, I was so wholly grateful for your presence.  

A few weeks ago, we had a class on Pelvic Exams. Our instructor got on the floor - whipped her legs apart and very relaxed, introduced us all to her vagina. It was astonishing - and definitely set the stage for comfortability with our own bodies following. It struck me while you were talking at one point today - that you were doing the exact same thing on an emotional level. Even more so than the pelvic exams, I truly cannot fathom the courage that takes, and I am ever so grateful to you for it. Your expression of accessibility and honesty was such an example for ourselves to be just that to ourselves, for each other, and for the women we will one day (hopefully) be caring for. Thank you so much for coming to talk with us -  It was truly a 'life-thought' changing day, and I am so thankful to you for it.

So perhaps, then, I am figuring out how to bring myself down to the level of a five year old, who has no long skirt under which to hide her emotions. She doesn't have the tools to try to mask the pain or the awfulness of what's happening. If I can demonstrate this, then may be some of the truth of it will seep through to those I am teaching. 

I can only hope. 

Zady

                                     

 waiting at the operating room door

waiting at the operating room door

When they wheeled Yahayra out of the operating room, her tiny, 4 pound, 10 ounce baby lay on her chest, bleating like a newborn lamb. Her friends and family-- numbering close to 20-- were gathered around the door of the surgical suite, and when baby Zady let out her first audible cry, the adults all gasped in unison and broke into enormous smiles. Laughter and coos began to echo down the hallway as mother and baby were wheeled down to a postpartum room, and excited chatter began to replace the hushed silence that preceded those operating room doors opening. What would follow was truly magical. 

I first met Yahayra nearly a month before Zady’s birth. At that time, she was seven months pregnant with a baby girl she knew would not survive. It was the first time I’d ever met a mother during her pregnancy with a baby who would certainly pass away. When Yahayra had gone for her 20 week anatomy scan, the ultrasound had shown that her baby girl suffered from anencephaly, a rare neural tube defect where a major portion of the brain fails to grow. Babies with anencephaly sometimes live for a short time, but they also frequently pass away in utero or die during the delivery. Mothers in this situation are always given the option to medically interrupt the pregnancy, either through early induction, or a medical termination through a surgical procedure. Because babies with this diagnosis can not survive, this option is often encouraged by health care providers. However, Yahayra felt compelled to spend as much time as she possibly could with her daughter.  So onward she marched, her belly expanding-- patiently explaining to her two older children and numerous family members about Zady’s unique condition.                      

Over the weeks as I met with Yahayra we spoke of her fierce love for Zady, and we laughed together as we watched little Zady’s feet poke Yahayra’s expanding belly. We shared the hope that Zady would be born alive and we would all get to spend some time with her before she died. During our visits we also made plans for how we would capture as much of Zady’s life as we could. Right away, we made plans for a belly cast (thanks to Karen Kurtigan) and prenatal photographs (Thank you, Erin Long). We brought Yahayra roses, her favorite flower, and helped her to create a birth plan that felt just right for her. Yahayra knew that when Zady was born, her goal was for a peaceful time together. Sadly, there was no way to save Zady’s life-- her brain was not formed enough to sustain her for the long term. It was Yahayra’s goal to hold her daughter and be with her while she died peacefully. A sad, dreadful, and awfully brave goal.                                     

Yahayra was scheduled to be induced on Monday, April 4, at 36 weeks gestation. I can hardly imagine what it was like for her to anticipate that date. Her body was essentially keeping Zady alive and stable-- delivering to her all the nutrients and oxygen she needed. There was no telling what would happen to Zady when she was born, if she even survived the birth. For Yahayra, to deliver her baby was to hasten her death-- an impossible predicament. Yet she also knew that for Zady’s birth to be induced while she was still alive increased the probability that she would be able to spend time alive in her mother’s arms. So onward Yahayra marched, hands clasped around her ever-growing belly, facing an impossible future yet head held high. 

 Yahayra smiling through labor

Yahayra smiling through labor

Yahayra’s water broke early in the morning of Sunday, April 3. It was as if her body knew it was time-- she had been in countdown mode for so long, and she was ready to go. She came to the birth center and was greeted by a warm, supportive staff who had been anticipating and preparing for Zady’s birth for weeks. They settled her into the largest birthing suite, right at the end of the hall, and began to wait. 

The people streamed in. By the time I arrived at 1 pm, the room was full. Husbands, wives, uncles, aunts, cousins, grandparents, and friends surrounded the laboring Yahayra and Gilbert, Zady’s father. A baby slept in the corner. A few small children darted in and out of the room. I entered with photographer Erin Long, who had also developed a strong friendship with Yahayra during her pregnancy. The two of us came in and were instantly wary of the apparent chaos in the room. There was Yahayra, in hard labor with a baby who would not live, and we worried that all of these visitors might just be too overwhelming. In hindsight, I cringe with embarrassment at this thought: this opinion was me looking at the situation through my own eyes. Later, I would learn that all these people were a gift. Erin and I gave Yahayra hugs and Erin took some labor photographs, and Yahayra welcomed us to join the crowd, to stay and join the wait for Zady’s arrival. We settled in and waited.

 A family photo taken during labor

A family photo taken during labor

While the labor had begun on its own, for a variety of reasons in the early evening the midwives determine that the best course of action was to deliver Zady by c-section. I breathed a sigh of relief myself. Watching this woman labor with enormous physical pain and knowing the emotional pain that would follow was exhausting. I wanted her pain to stop, I wanted her daughter to be delivered safely and alive into her arms, and I wanted her anxiety about whether or not Zady would survive the birth to be answered. Erin and I stepped out of the room as Yahayra was prepped for her surgery. Her family was given another hospital room to use as a waiting area. 

In our own little room, Erin and I talked candidly to each other about how important we thought it would be that Yahayra and Gilbert would have some time alone with Zady in the surgical suite. We felt that given the volume of guests at the birth, and given the emotional intensity of meeting Zady, the quiet moment of birth for just the two of them might be preferable. Erin trustingly passed off her professional camera to an assisting midwife to photograph in the surgical suite, and then we sat back and waited. 

Not too long after, the midwife re-entered. She held the camera in her hand, her expression grave. Zady had been born, and she was alive. She had a heartbeat and was blowing some bubbles, she said. She didn’t think she’d last very long. Erin pushed the camera back at her. “Please, then. Go back and take some more photos of her while she’s alive”. The midwife left the room.

When she returned, the news was better: Zady was pinking up, she was making noise. Yahayra was stitched up and they would be moving her back to her room in a few minutes. We were invited to the hallway to greet her. The family gathered around. The doors opened. 

This brings us back to the beginning of our story, where Zady and Yahayra emerged from the surgical suite. Yahayra was beaming. The family all leaned in, craning their necks to catch a glimpse of the tiny, swaddled Zady. The two were wheeled down the hall and the family followed. The doors to the postpartum room opened and everyone streamed in and surrounded the bed. Yahayra lay there, her long, red hair surrounding her on the pillow, her icy blue eyes sparkling. She smiled down at her darling little girl, a petite, dark haired beauty wrapped in a blanket. Zady opened her mouth and let out a tiny cry, like a kitten. Everyone gasped, and laughed, and cried. It was the most adorable noise any of us had ever heard. Yahayra leaned down and kissed Zady’s little face. The family gathered quietly and respectfully around the bed, their faces glowing with pride and love. Everyone was taking photographs and doing the things you’d expect people to be doing-- whispering about how adorable the baby was, cooing when she made her sweet noises, and reaching out and touching her soft newborn skin. Yahayra raised her face to her family and said, “I know you all want to hold her, but right now the most important thing for her is to be with me”. No truer words were spoken.                     

I have rarely witnessed such beauty as that time around Yahayra and Zady, when dozens of people gathered around this baby whose life was limited and witnessed her beauty and her reality so honestly and openly. Suddenly, all these people-- who I had somehow, for some unexplainable reason, feared-- were a gift. They were all there as part of Zady’s family, as part of Yahayra’s community. They were gathered together in recognition of Zady’s life and to honor her parents during the short time they would actively parent her. What followed was an experience so authentic, so real, it made me think that as an Empty Arms companion I ought to have planned it thinking ahead to what would happen. Zady was absolutely confirmed and welcomed into a circle of love. Yahayra was confirmed and validated as a mother of three, Zady was confirmed as a sister, and her siblings were able to meet and interact with her immediately. In fact, they were able to help to dress Zady, diaper her, and interact with her just as siblings would.           

 Yahayra with her children 

Yahayra with her children 

Cousins and aunts, uncles and brothers, and the pastor from Yahayra’s church gathered around, hearing Zady’s voice, telling her parents how beautiful she was, and filling the room with joy. There was not a hint of grief, anticipatory or otherwise, in the room during that time. Zady was perfect and beautiful in everyone’s eyes. They loved her for who she was, as she was.                        

Everyone gave their time, their presence, and their love to Yahayra, Gilbert, and Zady, and then slowly, one by one, they kissed Zady’s tiny face and said goodbye, just after midnight. Nobody knew how long she would live for. They all hoped for more time.              

Yahayra and Gilbert had three more hours with their darling girl, just the three of them. They changed her clothes, they held her some more, they slept some together. At just past three, Yahayra’s dearest pre-natal nurse, Megan, the only one who hadn’t yet met Zady, came on shift. She came into the room to give Yahayra her pain medication, and Yahayra woke up and excitedly shared her beautiful newborn girl with Megan. It seemed a miracle that Zady was actually there, that she had been able to experience everything that her mother had waited so long for her to experience. She had been held, loved, and cherished. She had been met by family, shared, and blessed. Everyone who had waited for her, who had hoped she would live to meet them, had gotten their chance. 

And then, just like that, quietly and peacefully, Zady passed on. In her mother’s arms, right there, warmly and softly. I was not present for this moment, but I have an image in my mind of her little soul rising from her body, contentedly rising to another place, having fulfilled her time here on earth. Yes, her time was much too short. Yes, her parents desperately wanted more time. But the experience she had was beyond value, and the sweet, love-filled memories that her family will carry of her will last forever. 

I have companioned with many families over the years, but I have never had the opportunity to build a relationship with a mother the way I did with Yahayra, as our friendship grew in anticipation of Zady’s birth and death. Being part of her birth experience, and being able to witness Zady’s life and her time with her family was a privilege beyond words. I feel so blessed having been able to know Zady, and to be part of her short life. I feel so grateful for having been able to feel her warm cheek beneath my palm, for having been able to laugh along with her family when she let out her beautiful cries, and to be able to shed authentic, love-filled tears after her death. Little Zady, whose full name is Zadhayra, taught me so much. I will always remember her. Her life was short,  but her mother and her taught me so much about patience, and bravery, and love. 

VERY exciting news!

Hello Empty Arms friends, supporters, and followers,

We are so excited to announce that after almost 9 years of patiently (and sometimes painfully) organizing our meetings in generously loaned spaces, Empty Arms Bereavement Support has found a home.

Tucked into the front corner of the Florence Business and Arts Center (formerly the Florence Community Center, and also known to many as the old Florence Grammar School), we have secured a room that will be large enough to house all of our current programs and allow us the ability to offer far more than we are currently able to offer without a location that is exclusively ours.

We are beyond excited. For years, we’ve longed to tuck people into comfortable chairs with cups of tea or coffee and make them feel at home. It’s our belief we will truly be able to do that in our new space. We are so grateful that we can design a space that truly allows us to provide a physically safe and comfortable environment for our community. No more will we face the over-formal setting of the conference room table, and we can say goodbye forever to fluorescent lighting.

We also see incredible options for expanding the support we provide with space of our own. No longer will people in crisis have to wait until the next support group meeting to connect with someone from Empty Arms in a private, safe setting. Our space will be large enough to not only host support groups but also trainings, potlucks, and parenting after loss playgroups. Our staff can work out of organized offices and become more productive. As our capabilities continue to expand, we look forward to learning what other types of programs and events we can offer.

You’ll see more details about our new space in upcoming emails. This is a HUGE step for Empty Arms! In the past, we’ve always felt compelled to scrimp on our expenses, but we feel the time has come to prioritize a home. It’s going to take everyone’s participation to make this happen. On May 3rd, Empty Arms will be participating in the Valley Gives Day campaign again! Our fundraising this May will be specifically targeted towards starting a nest egg to ensure that we can stay in our own place for years to come. We’ll be asking every person involved in Empty Arms to reach out to their communities to help us fundraise to acquire and maintain what we believe will be a true asset for all Empty Arms families now and in years to come.

With great hope and anticipation,
Carol and the team at Empty Arms

A reflection on a life.

Saturday afternoon, I had the heart-wrenching and soul-expanding experience of attending a memorial service for a girl in my son Liam's class. I'll call her B, and a year earlier, she had been diagnosed with cancer, a battle she lost at the close of 2015.

B was born just 8 weeks before my Charlotte, and I'd met her as a baby-- a baby who was a girl, a peer of my baby girl who had died. When I first saw her,  I took one look and I fled, leaping over chairs in desperation to avoid such a trigger, finding myself in another room with heaving sobs, out of breath and panicky. However, B kept re-entering my world, and at the age of 6 she became an everyday fixture in my life when my son joined her K/1 class. 

For years I watched B grow, and I felt an intense fondness for her. There were other girls present, yes, of course. They, too, were Charlotte's age mates, and I could have easily latched my quiet, private sentiments onto them. But I think the fact that I had seen B as an infant caused me to see her more clearly and realistically as Charlotte's peer. I also knew, from mutual friends, that B had experienced some difficulty early in her infancy, and I imagined that her parents viewed her with a gratitude, relief, and devoted love that I was able to honor. She was Charlotte's peer, but her parents recognized the miracle that was B, and so she was safe. 

It seemed a terrible, awful, and unbearable coincidence when B was diagnosed. I imagined, at first, that she would survive: doesn't it sometimes seem like other people always dodge the bullet? When it became clear that she would not, I could hardly think of it. I did not want to open the box, deeply tucked inside of my heart, that contained the anguish that I once experienced it every day. It would not be my sadness for her, though of course I would miss her. It was knowing what her family would experience, and on a completely different level. What would it be like to have 12 years, and then face death? I could not even contemplate the idea. 

When she died, that box cracked open for a moment, but still I was shocked at my own dissociation from grief. I felt awful, I felt disbelief, I felt horror for her family. But I could hardly get the tears to roll down my own cheeks. What had happened to me? How was it that I had become so practiced in holding back pain that I could barely experience it anymore? 

The memorial service gave me the gift of being able to grieve this beautiful soul, this lively, unique girl, and also mull over my own connection to her, and to Charlotte. Her parents created something so deep, so meaningful with personal readings, music from her brothers, and dozens of stories that brought B right back to life in the room. I know each person who attended, whether 6 years old or 60, left with a strong sense of gratitude for B's life, with admiration for her amazing courage and humor while she was dying, and deep sadness that she was no longer here. 

I was experiencing all those feelings as I began to leave the church, walking down the stairs from the choir loft where I had watched the ceremony. I was full of so many big, huge feelings: among them giggling to myself about the funny stories about B, feeling bowled over by the intensity of how brave she was, and reflecting on how small her family looked to me without her there. Suddenly, I remembered that it was B's birthday. They had waited until this day to hold her celebration of life, and suddenly something clicked in me. 

The box opened, all the way. 

I realized that B and Charlotte began at about the same time. B had filled up all the space in between, she had been there, vivacious, honest, herself, while I had lit candles on 12 cakes where there was no girl to blow them out. I had sang my sad, quiet birthday song to Charlotte with tears rolling down my cheeks 12 times, while  B was out there living. But now she had no 13th birthday to celebrate. With that one thought that those two girls who started out life so differently both had no 13th birthday to celebrate-- the box opened. 

Huge, wracking, heaving sobs overtook me. What could I do? I hurried back up the stairs to the empty choir loft, I dug a handkerchief out of my purse, and I cried in a way that I have not cried for probably a decade. I could hardly breathe. The photos of B at the front, with her wide, joyful grin, suddenly yanked me down somewhere deep and dark. Some element of guilt crept in, because I knew my tears were also for myself, and not just for B's family.  I was taking a moment to feel that desperate, awful sadness that had once consumed me on an hourly, daily basis. It was what her family was feeling, what they were living. The sadness, though also for me, was some sort of connection.

When it comes down to it, I think that anyone who has experienced deep, all consuming, life changing grief has a point of reference for being present with another who is experiencing that same thing. There is a primal, animal way that the desperation for another person and the hopelessness of facing life without them can swallow us whole, leaving us certain that we will never survive the pain. Yet, somehow we do. Somehow we do. 

I am grateful today for the life of B, and for the many, many ways that she brought me closer to my own baby girl. Through her life and through her death. she has continued to bring me back to my original child and my original experience of motherhood. I am also grateful that I have learned over the years to keep my grief in a safer, more manageable place, but it felt strangely fulfilling to have that box flipped open wide that day, to experience and remember what my days used to be filled with and to be aware of how much has changed. 

Thank you, B. 

Being alive, afterwards.

I wrote it in the year after Charlotte's birth, when I found writing in the third person to be the easiest way to tell my story. I called myself Clare, keeping the number of letters and the initial consonant the same, but otherwise foisting my story off on someone else. I think it speaks to survival. 
~ Carol McMurrich, Charlotte's Mother & Founder of Empty Arms


Clare’s memories of coming home were snapshots: scattered, disheveled images with no distinct chronology or organization. She had described these recollections to somebody once, comparing them to the memories one often has of early childhood, when pictures of faces, smells of grass and apple juice, or the taste of saltwater can tie a person to a frozen moment in time, a memory one can be certain is real even when there are no surroundings to it. Clare felt just this about coming home, although there were so few reminders to tie her there.

Clare had been told that there were probably a multitude of reasons why she could not remember the self that had emerged from the hospital on that warm May afternoon. First was the birth itself. Perhaps as an evolutionary advantage, there is often an amnesic quality to the aftermath of birth, or even the experience itself. Many mothers over time have experienced this; some who have had extremely difficult childbirths cite their hazy memories as the probably cause of their subsequent children whom they had sworn off having during their labors.

But in addition to the birth experience, Clare had been told, her mind was sheltering her from the intensity of the painfulness of her experience. Clare had become, in a heartbeat on that May day, the survivor of an unbearable accident: one that left her alive and her daughter dead. This accident was too unbearable to recall in its full clarity, lest her already gaping wounds begin to bleed again.

But as much as Clare’s mind fought to protect her from her own history, her heart longed to remember. Knowing what her life had been like in the aftermath of her daughter’s death somehow seemed like a tie to her little girl, another way to make Charlotte’s brief life more real to Clare. And so, on the long winter nights of that December and January, Clare fought her subconscious, fishing for the memories that might help her to piece together the remains of her broken heart.

There was the light. It was May, and the days were long, the sun rose early, and their house seemed perpetually filled with light. But the heavens poured with tears, for nearly three weeks after coming home it rained ceaselessly, and so the light in the house was not pure, it was a filtered, bluish light, cold and grey. Clare rarely looked out the window intentionally, but the light was there, casting the reflection of the steel-grey sky onto all the surfaces in her home. For may weeks it was the color of her world as the rain tumbled down.

The sounds in the house were still ones. Clare recalls almost nothing about the way she or Charlie sounded or interacted but she can hear the others. They are padding around in the kitchen, stealing out onto the sun porch over the creaky old floor, they were washing the dishes intentionally, trying not to knock cup against plate or spoon into glass. They whispered in hushed tones, Clare knew they were talking about her but she didn’t care. And every so often, there was music that Charlie put on . There were two CDs they could listen to. Clare liked the sad ones, the ones that gave her a new reason to cry. There was one about cutting down wisteria and another about lost dreams and they had listened to them again and again as the seconds of their new, unwanted life ticked on, and the rain poured down.

Clare could taste the sweet, sticky taste of that May’s strawberries, mixed with a hint of cinnamon and cold lemonade, The smell of lilacs drifted through her mind as she thought back to herself then, a self she could not bear to be.

And Clare could feel her body-- her ravaged, miraculous body, both lacking in the life that had once dwelled within her and swollen with the insatiable desire to sustain that life. Clare could close her eyes and pull herself back to the weakness she felt as she moved, the instability when she rose from her seat, the pain when she lowered herself down. But mostly she could feel the emptiness, the hollowness of her abdomen, the stunning lack of movement, the flatness of her once rounded body. And that body, refusing to believe, not knowing where Charlotte had gone, futilely working, converting Clare’s strawberries and cinnamon buns and lemonade into the rich, perfect milk that filled Clare beyond her capacity, spilling down her front, staining her shirts, and tearing apart her heart like nothing else could. She could still smell that milk.

And Clare remembered herself, standing in front of her bathroom mirror, eyes reaching from her swollen breasts, to the red marks her daughter had stretched across her belly, and up to her face. Clare can remember the shudder she would feel each time she looked in the mirror and it registered that she was the sad, sad woman looking back. It was not a stranger whose hollow eyes revealed unspeakable trauma, it was not someone else’s cheeks chapped by tears, it was not somebody else’s mouth that turned down slightly at the corners. Clare would think, sometimes, when she looked at herself, that she had never seen someone look so sad in her entire life, and that in itself would make her sadder and she would leave the bathroom and return to the sofa and smell strawberries and lilacs and hear the soft voices and feel empty inside and wonder how she would ever make it for the rest of her life.

And it’s in this context, sometimes, of taking herself back to the feeling of lead weight on her chest, to the physicality of a completely broken heart with no supports, that Clare realizes that right now she is making it. It is only when she remembers being paralyzed with pain, too hurt to speak or interact with anyone but Charlie or to walk or eat, that Clare knows that a new part of her has opened. She can never bring herself to say that things are better, because Charlotte is still gone and that won’t get better. But in fighting back the amnesia that separates her and May, she learns that a new part of her has grown, like a new branch on a tree, and that part is beginning to live again.

Everything felt sacred.

The night was warm and dark as we pulled out from downtown Northampton, heading up the highway. It was just past 2 in the morning, less than 30 minutes since I’d gotten the call from the hospital. A baby had been born still, and they wanted photographs as soon as possible. I made the only call I needed to make, and within minutes both Erin and I were heading to a meeting spot in Northampton, ready to do the work that needed to be done.

Erin and I have known each other for more than eight years, our friendship having been born with the birth and death of Erin’s first daughter, Birdie. That March of 2007 Erin called for support not quite three weeks after Birdie’s passing, as I was decorating my own living daughter’s first birthday cake. She was among the first mothers that I sat with in early grief. I was instantly drawn to Erin’s passion, her intimate, gentle love for her daughter, and her fierce understanding that she would somehow honor Birdie’s memory. We were drawn together by our first daughters, shadow girls who would somehow live with us forever, even when they had left us physically. A quiet, wise friendship was born. For each, the other possessed an experience and understanding that every other loving, caring person in our lives fortunately lacked. We knew what it was like to fall in love, give birth, and say goodbye. We knew what it meant to rebuild piece by piece, day by day, tear by tear. We both knew the joy, euphoria, and incredible risk of the subsequent children we were both fortunate enough to welcome.

When the idea began to percolate to incorporate our own team of photographers for Empty Arms, modeled after the incredible work of Now I Lay Me Down to Sleep, I knew that Erin would be a critical player on our team. It was not for many years after Birdie’s birth that I learned of Erin’s incredible skill as an artist, and at that same time she began to muse that eventually, when she was ready, she knew that photography was the way she would transform her love for Birdie into a gift for someone else. Erin herself had been given the gift of gorgeous photographs of Birdie, taken by a NILMDTS photographer who drove in from Worcester. Knowing how difficult it can be to access photographers in our area, she knew this would be her calling. And indeed, it is.

  Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 


Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 

While our photography program is still in its infancy and development, what we can accomplish for a family is already life changing. And so it was, that on a dark, wet, warm Tuesday morning, Erin and I drove up the highway to meet a newborn baby. We entered his room, and his family’s life, at just past three. The lights were low, and everyone’s voices were quiet as we entered and introduced ourselves. It was late, and everyone was exhausted, overwhelmed, and in shock. Our goal was to capture this moment, to photograph this tiny piece of time that would live forever in this mother and father’s memory, that would become the most tangible piece of their son’s life story.

Entering into this space is different every time. When a person’s life falls apart so catastrophically in such a short period of time, there is a feeling of being lifted from the earth as we know it. Time stops, and there is a lull as one reconsiders their past, present and future. The past, when they expected so much. Their present, where they are faced with this beautiful, breathtaking, agonizing love for a child who cannot stay. And their future, which they cannot bear to face. For each person, they are reduced to the core of who they are: they follow base instincts and are guided by those around them to create an interaction. They are in shock, in this strange, timeless void, and there is a wide range of reactions. Some people are so frozen with terror and grief, they can hardly interact with their baby. They are limited by the intensity of this moment, and everything feels too overwhelming and sad. Some people are full of pragmatic questions and thoughts, their minds racing with memories of the pregnancies, what-ifs from the past few days or weeks, and fears and anxieties about what the future might hold. And then there are the others, who are somehow able to sit quietly right in the moment and experience their baby for who he is, what he is, right now. This was what we found that night.

A mother lay holding her newborn son. He had died the day before, and she had labored all afternoon and into the night. He was beautiful, fair, with blond hair and soft, perfect skin. She cradled him in her arms, and her thumb stroked his cheek. The light was low, and her eyes barely lifted from her son’s face upon our arrival. She was here, in this moment, taking in this little boy in the time she would have. We introduced ourselves and our role, and our work, but it soon became easily apparent what this evening would bring. We were but witnesses to a mother’s love, and we would drink in this time.

  Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 


Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 

We moved silently, quietly. Erin had her camera, and I helped the mother find the perfect angles, the perfect experiences with her son. We unwrapped him from his blankets and laid him on her bare chest, her skin warming his newborn self as her cheek rested on his tiny, soft cap of hair. We focused on hands, ears, toes, and knees. His father, who had been sleeping, awoke and joined mother and son in the bed. They created a perfect triangle, two heads together gazing down at their baby boy. Erin captured the mother’s fingers on the baby’s, the dad’s hand on baby’s tiny back. When we spoke, it was quiet and direct. The baby was diapered, dressed, and held some more. He was swaddled, and unswaddled, kissed, cuddled, and stroked. The two parents surrounded their child with their love. We admired each and every part of him, as any people would in the presence of a newborn. Our voices were mesmerized, quiet, and slow. Everything felt sacred.

For every time I have done this work, there is a crystal-clear moment when I realize our work is done. That this family needs the room to themselves, that it’s time for us to go. Certainly hundreds upon hundreds of photographs had been taken. We had captured everything that this mother and father hoped to capture. At just before five, it was time. I spoke, and told them we would take a few more shots of the three of them together, and leave them to be a family. They nodded, and we did just that.

In the end, Erin and I arrived back in Northampton at first light. Our car ride back was quiet and thoughtful, but infused with one strong knowledge: what we could give this family, in that moment, was beyond value. Here, in the dark of night, two mothers who knew this grief had entered their world. We had affirmed their son’s perfection, his reality, we had witnessed his life and existence. We had called him by name, touched his smooth skin, stroked his downy hair. We had quietly respected the beauty of this moment, of this tiny child and his two parents, and Erin had captured what she could with her art.

A photographer who works for NILMDTS once told me, “People always ask me, ‘How can you do that work?’ And I tell them, ‘After you’ve done it, the question becomes how could you NOT?’” This is the feeling I am left with. Whenever I am blessed to enter a family’s space in this situation, to meet their child, and help them say hello and goodbye, I feel an overwhelming sense of privilege. Is it difficult? Of course. Is it sad? Without doubt, every single time. But each time, I am filled to the brim with a sense of having offered something truly from my heart. There is nothing like it. I am so grateful to Erin Long for giving herself and her work to these families. I know she will smile quietly reading this, knowing that what she gives to others comes truly from her heart and feels like the most important work on earth. And for each family, in each moment that she captures, it actually is.

Looking Back

by Carol McMurrich

In 2013, I wrote three blog posts on the 10 year anniversary of Charlotte's birth, at three different times of day. They document my searing memory of that day, of the events that marked the beginning of the rest of my life. There is some of my present day woven into the prose, but mostly it's the visions and realities that both feed and haunt me to this day. I wanted to share this because we all have incredible details to our story, and often nobody to witness those details. Writing has helped me incredibly to weave the truth of that day, with both its difficulty and beauty, into my life right now. 

5:30-8:30 AM, May 13, 2003

There is a space that happens between last night and today. It is the space between hope and loss, between optimism and despair. Somewhere in the middle of the night lurk those dark hours, quietly patting around the house, water leaking. She was dying. I had no idea.
When I woke up this morning it was already five thirty. I don't know if I've ever slept all the way through the fours before, this being when I was told that she died and my world collapsed. By five thirty I was already calling my dad. "It's not good news," I told him. "The baby died. We don't know why." I was sitting in a room that I remember as small and white, although I now know that my memory is not accurate. Perhaps that memory was just the world closing in on me, squeezing me into a space that was smaller and smaller, until I could no longer breathe myself.
Right now it is eight thirty. At this time I was moved to a birthing room. My labor had all but stopped from the shock. There was talk of induction, of maybe even an epidural. I had told my family not to come. I was hugely pregnant, freckled, suntanned, healthy. I was in a birthing bed, surrounded by pretty furniture and a big window that opened to a courtyard. Outside, the lilacs were blooming, and a heavy rain fell. My baby was dead. I had no idea what to do.

-----------------

8:30-12:30 

It is now past noon. In my mind, the rain pours down and the sky is steel gray, though I cannot see it through my window. As I type today the sunlight is warm on my legs, but I can still feel that cold rain. A social worker has come to see us. Gently, she has told us we can call our families to come to meet our baby. She tells us that people often take comfort in spending time with their babies after they are born, and take photographs. We think this woman is lovely and kind, but her ideas don't appeal to us. We want no witnesses to this tragedy, this failure. We require no documentation.

Yet only an hour or two later, after the epidural is in, and I have dozed through tears and held Greg for some time, I realize I want my family here. I want my mother's arms around me. I need to see the earnest blue eyes of my father, even as they weep for me. I bring the social worker back and tell her I want to call my family. Her eyes are warm. "They are already here," she tells me. She goes back out, to the solarium family room which has been cleared of all other waiting families so that my family can have a private space to grieve. I learn that as my sister entered the ward, she heard a baby cry and collapsed onto the floor in grief. The social worker warns me of my sister's emotion, but when Stephanie comes, she offers nothing but love and support. She knows to channel her grief out, not in.

We are hugged and loved, but only for a short time. Our stamina is low. We needed only a moment, and then they are gone. My mother cries after she leaves, wondering how this blossoming, beautiful, healthy looking daughter could be handed such a sentence. They return to our home, and begin to pack and make phone calls.

Moments ago, on this real day, ten years later, I sat with Maeve in the rocking chair. She slept in my arms, and I hesitated before lying her gently in her crib, Charlotte's crib. I thought about how ten years ago, this room became a museum. Ten years ago this moment my mother and sisters combed through every inch of the house and picked out every thing that tied us to parenthood and put it into a blue tupperware bin which they then deposited into the nursery. Fortunately, somebody had told them not to touch the nursery.

In a book, upstairs, pasted in a memory book as if it were a document to treasure, is the phone bill, which itemizes each long distance call that went out from our home that May 13th. Each person from afar that needed to be notified of the sad news. Most of the calls are one to two minutes long. There are three pages of calls. I kept the bill. It is part of her story.

Right now, those calls are happening. I am in shock, wide eyed and confused in a hospital bed. My body is laboring, but I can't feel it. At home, my sisters and my mother are on the phone, telling everyone the same thing: The baby is dead. It hasn't been born yet. We don't know what happened.

-------------

12:30-6:30 pm

It is now six thirty. I have felt labor as my epidural wore down, and been told I should push the baby out.
How was I supposed to do that? I pictured myself pushing my baby off a cliff. When she was born, she would be dead. This would be real.
It will be the hardest thing you ever do, my midwife said. But you just have to do it. She was right. And I did.
Charlotte was born at 2:14. I pulled her right onto my belly and clung to her. She was the most amazing, beautiful, perfect little person I had ever seen. The heavens opened and the angels began singing and golden, streaming light poured down, just like with every birth, except for the voice in my head screaming NO, NO, NO.... as I simultaneously realized what I had been gifted, and what I had lost. I had had no idea about either prior to this moment. Suddenly it was truly real.
I learned in that moment the most intense, heart wrenching, magnificent lesson I've ever learned: which is that it is better to have loved than to have never loved at all. In that moment, even as I realized that she was already gone and I would never get to keep her, I felt incredible, huge gratitude to know the feeling of a mother's love. I held my own, sweet newborn tightly against my breast, ran my finger over her delicate nose and tiny lips, and traced the curve of her ear. I learned my baby girl by heart and felt the most beautiful, sweet, pure love I had ever felt. I knew instantly, even as the truth of what was about to happen-- her departure from me forever-- that I was going to feel forever grateful for having had her. I knew that her loss, and the huge impact that loss and grief would have on my life, would not ruin me.
It is now six thirty. We have not slept in thirty six hours. We are waiting for Greg's mother to come and meet our baby. She is on a plane from Virginia. His father is coming from Calgary, their second home, and will not arrive until after nine. We have already decided that we cannot wait for him to arrive. We are too tired. We will have to say goodbye to our baby girl before he gets there. I do not know why we decided this. It is my only true regret.
We pass our baby back and forth, kissing her, admiring her beauty. We are afraid of her body changing, although it has not yet. She is still warm from our bodies, but we are afraid. We want our memories to be sweet. 

Tick, tock. Tick, tock.

 

Questions to ponder...

This is a repost of a blog musing from 2008... something I think could rouse thoughts and opinions for anyone in this community. 

How it is possible to be up to your neck in self-pity and still have compassion for the relative heartbreak of anyone else?

Sometimes here I start to feel like a traitor, an imposter, a cruel, wretch of a person hiding in the skin of an empathetic, supportive, listening ear. Truth be told, I just can't think of anything worse than a dead baby. So when somebody is starting in on their own worst day, it can be so hard not to let the caustic, dripping words leak out of the corner my mouth, unintentionally.

A good friend was sharing with me, a month or so back, about a friend whose baby suffered an injury during the birth that required her arm to be amputated after the birth. "Can you imagine?" she said to me, "Your beautiful baby, losing an arm?" I could not imagine. I did try to imagine the awful pain for those parents, pictured my Liam or Aoife, seemingly perfect, off to the operating room to become un-perfect. Truly, truly, in my heart of hearts, I felt an enormous surge of pity for them, imagining the horror of the experience, the aftermath, the pain of having a child with one arm when everyone else's child has two. But still, as I was imagining this, and feeling their pain, I also thought these words, "Can you imagine giving birth and the baby ends up being dead?" Ummm... yeah. This is where I feel like a jerk. Because I do think those people drew a short straw, too. It's just that to me, it doesn't seem short relative to mine. If I could have Charlotte back, minus the left arm, I'd take her.

But I've worked, truly hard, to really understand that each person's worst day is truly their worst day. I believe this, truly. But it's THEIR worst day, not mine. And if their worst day happened to me, after having had MY worst day? It's possible it might roll off my back. Kate's post was in reference to birth trauma, and people mourning the loss of the birth they'd imagined. True, and valid. I can see myself in those shoes, had I been given those shoes to walk in. But here's what it's like for me. I was having lunch with an old friend the other day, and told her of Liam's flip between 8 and 10 cm, and the cesarean that ensued.

"I'm sorry," she said. I looked at her pretty hard. "Don't be," I said. Truly, I meant this, it almost seemed comical to me that she was pitying me for having had a cesarean. But this is true for so many people, that they really do need a condolance, because they've lost an opportunity they felt was theirs to have had. What I had was not a loss, but a gain: I had a breathing, living child. The way he came out literally (and there truly is no exaggeration or denial here) did not faze me. If anything, it was a dream come true. For that year before, I had spent so many hours daydreaming about how they might have saved Charlotte if only they had been there to save her. Now here they were, performing the heroic rescue I had imagined. The birth cry was all I needed. I did not care how I got there.

And then there are my childless friends, still working through love crises of their own, who have related the loss of a lover to the loss of a child. For this, I must really bite into a leather strap, because love does not equal love, and I just can't say anything more on this, except to try to remember that this is what they know.

So I'm working on this. I feel as if I've come 150% in this field, because I don't resent people anymore for grieving things that I myself would not grieve. But I do, without apologies, often feel that my worst day was, well, worse than their worst day.

(and that's me, 4 years out. Does it feel different? Yeah, I think now I've probably come about 300%, but I still sometimes feel like a jerk)

 

Thoughts from San Antonio...

by Carol McMurrich

May I offer my care and presence unconditionally, knowing it may be met with gratitude, indifference, anger or anguish.
May I see my own limits with compassion, just as I view the suffering of others.
May I be present and let go of expectations
May I forgive myself for mistakes made and things left undone. “

I was challenged, in the opening keynote address of the 2014 Biannual Perinatal Bereavement Conference, to try to connect to a time in my work when I acted with “personal ethical integrity”. The speaker, Cynda Rushton, is an extremely accomplished Bioethicist who works within the schools of Medicine and Nursing at Johns Hopkins University, and she was leading a fast-paced talk on personal integrity when working with the bereaved. 

Ms Rushton encouraged us to think about a time when we worked in a way in which we were very much aligned with both our personal and professional values, in a way in which our actions were very much congruent with what we believed was morally correct. Sifting through memories, I thought of a time when I had the extreme privilege of working with a baby boy who had been taken from this world far too soon. I had been called in by the hospital after his parents had left the hospital to take more photographs of this little boy. I arrived early one bright, winter morning, apprehensive but determined. 

In my work I often arrive to work with families at the time of their loss: if the family is not still with their infant, they have often just left the hospital. In this case, however, the family had been released the night before. I worried that the baby might have spent the night in the morgue. While I know this is, sadly, the ultimate destination for all people in the hospital who pass away, it causes me such distress to think of precious babies needing to go there. 

I shouldn’t have worried. We are so lucky in this valley to work with professionals who are so compassionate, and who care so deeply for the families who suffer losses and their babies. I arrived to find this baby in a warmer, in a delivery room, just as you would expect to find any newborn of any family who had delivered there. 

He was a beautiful, beautiful little boy. What baby is not? But there is something about the deep privilege of meeting a small person who will not be met by very many others that is humbling at the very least. I knew I was gazing at a beautiful face that was meant to be admired by so many others, but that privilege would be denied to most of them. I knew I had a few hours to try to capture him as best I could for his family, and I was determined to do my best. Before I photographed him, I talked to him. I picked him up and held him, allowed myself to stroke the soft down of his cheek, and I told him I was going to take some photographs of him for his Mommy and Daddy. He still had that beautiful newborn baby smell. There was so much beauty in that room. 

I spent an hour, and then another hour. And then another hour, and just one more. How does one stop? Not only did I want to try to take as many photographs as I possibly could of this baby, but I also didn’t want to leave him. Here, with me, in a warm room, surrounded by myself and the nurses who were helping me, this baby remained in the land of the living. How I wished, for his parents and family, that he could stay. 

I hesitate to share that when my time was up, it felt difficult for me to leave him. I wrestled with this emotion: he was not my baby. It felt unfair of me to feel that I wanted to stay with him, to give him one more hug, to feel his soft weight one more time. He was not my baby to love, and I felt guilt-ridden to be there when his parents were not. But there had been a sanctity to the time I had spent with him, and my heart felt connected to this baby. Perhaps some of this came from a selfish place, from wanting more time with my own baby, but perhaps what it really was was just my being human, and being a mother, and a person with a compassionate soul. He was not mine to love, but I loved him in my own small way in that moment. How could I not? 

As I recalled these moments, I felt a deep, heavy feeling, way down in the pit of my stomach. It was not one of despair, or even grief, although sadness was certainly part of what I felt. Primarily, though, I associate that feeling with the deep gratitude that I felt for having the privilege of not just taking those photographs, but having been one of the witnesses to the life and existence of a little boy who had changed his family forever. No doubt somehow he will change our world a little bit, and I was able to meet him. 

It was my hope that this baby’s family would cherish and love the photographs. However, as I prepared to present them with the over 400 photographs I did take, I had to remember to myself that the important part of this work was not the family’s instant reaction to the products of my actions. It was those actions themselves. To have been able to be there, in that room, to capture something that might otherwise never had been captured was a tremendous privilege. To have taken the time, and offered this baby boy my loving hands to try to capture his beauty one last time, was my own effort to give this family a lasting gift. 

I went home and I wrote a long letter to his parents. I still felt uncomfortable that I had spent this time with their baby, when they could not. I worried that they would not have wanted me to spend this time with their son, and I worried about whether they would want the photographs. I worried about whether there were too many photographs. I thought about the time I had spent with their baby, and I cried for their family, for the void I knew now existed in their lives, for the beautiful boy who had never drawn a breath. I felt guilty and awkward for the strange attachment I felt to their baby, and I felt worried that I had let myself fall too deep into the work that I was doing. 

Then, I sat on the edge of my bed, and I breathed it out. I knew I had done my best. I had acted with the intention of giving this family the only gift I knew to give them. I had acted with the intention of honoring their son, of caring for him as any baby deserved to be cared for. I had acted with the intention of doing unto them exactly what I would have wanted done unto myself. I tried hard to breathe out the worry, the guilt, the sorrow, and to breathe in the knowing that I had tried my best to do what I felt was right. 

Again, I reflect on Dr Rushton’s words, which could become a mantra for me: 

“May I offer my care and presence unconditionally, knowing it may be met with gratitude, indifference, anger or anguish.
May I see my own limits with compassion, just as I view the suffering of others.
May I be present and let go of expectations.
May I forgive myself for mistakes made and things left undone. “

Each day, each week, and each month, as I do this work, I seek to maintain the integrity that will allow me to walk with my heads held high, knowing that am a human being simply seeking to serve and support others in their most difficult moments. Regardless of my shortcomings, the areas I am still working on, the mistakes I may make, the things I may leave undone, my intentions are good, and my efforts are honest and sincere.

May I hold onto these positive breaths, and these feelings of gratitude.