A Visit with Chiara

Suzanne Pullen led a visualization exercise during the memorial service at the end of the Stillbirth Summit 2014. She asked us to close our eyes, focus on our breathing, and then imagine a place we love, where we feel safe, and to go to that place in our minds. She encouraged us to look around and to notice what we see there. I found myself on Star Island in the Isles of Shoals, a retreat center that is important to my family. I saw myself getting off the boat on a gorgeous summer day, walking down the pier, heading towards the lawn. As I reached the lawn, I saw a little girl. It must be Chiara, but she was older than her 22 months. She could walk, she could talk. She was wearing a white dress, and she was barefoot. She grabbed my hand and pulled me towards the gentle green slope. “Mommy, mommy, come see, come see,” she laughed and ran ahead. I followed, my heart swelling with pride and love seeing this vision of my daughter. I chased up the hill after her. The hill was backlit by the sun. She got there before me, and kept saying, “Come see, Mommy, come see,” As I got closer, I could see her standing there with other people. My Dad, 12 years gone, was there, waving. My Nana, now gone 9 years, was there, too, she was also smiling, waving. Chiara was bouncing up and down, saying, “I’m OK Mommy, I’m OK”. She was waving to me, smiling, laughing. It became clear that I could not reach her. I told her so, told her I had to go, told her I loved her so much and that I’d come visit again and someday I’d come back to be with her for good. I couldn’t reach her, but I imagined holding her close, kissing her face all over, squeezing her tight. I could feel her in my arms, sense her skin under my lips. I told her over and over again how much I loved her. I tuned and walk down the green slope, toward the boat waiting to take me back. She continued to wave, and I could hear her voice telling me, “I’m OK, Mommy, I’m OK!”. She was flanked by my Dad and Nana, who were still waving. There were others standing in the light that I could not see, but I had the overwhelming sense that they were all OK, there was a profound feeling of love, and also an understanding that I could not remain with them, but that they would wait for me.

I have never had this kind of experience before, although I have tried to make myself open to them. I have tried to fall asleep with the intention of dreaming of my baby girl, tried to will this kind of interaction, but I have never received this gift before. I do not know what to make of it. I don’t know if what I saw was a beautiful movie created by my mind, or if I somehow did get a glimpse of my daughter, my Dad, my Nana. I don’t think I will ever be certain, but I am so incredibly grateful for this experience. I will relive it over and over, and I hope to be transported back there someday. 

Stillbirth Summit 2014

All the stars for our beloved babies, hanging in the lobby of the conference venue. A beautiful reminder of why we were gathered together.

I am returning home from the Stillbirth Summit 2014. I traveled to Minnesota to participate in the final day of sessions, geared towards parental bereavement. I hated to miss the medical sessions the first two days, but I’d already made a professional commitment by the time I learned of the summit. So, I left home for Denver, CO on Thursday, presented at a conference in Denver on Friday, and then flew to MN Friday night. I got in very late and didn’t sleep well. I woke in the morning with enough time to pump milk for my 1-year old, shower, and head out. I sobbed in the shower that morning like I did back in the early days after we lost Chiara. I was nervous and excited to attend, to meet other parents, to hear the presentations and spend a day focused on learning more about stillbirth and strategies to reduce its occurrence and to support bereaved families.

The conference was excellent. I deeply regret not being there for the entire event. Coming late to any event means missing out on the forming of the community that starts at the beginning. I felt a little like an outsider throughout the day I attended, having not had time to meet people over the first two days. If I am able to attend again (they are already planning for 2017!), I will try to be there the entire time.

Throughout the day, there were 10 different sessions, with topics ranging from participatory research (thanks, Still Life Canada!), to the benefits of exercise for bereaved mothers, to an excellent (albeit too short) writing workshop, to research on bereaved grandparents and siblings, and more. Each session was introduced by a bereaved family member, in honor of their baby/babies. This was very grounding and meaningful, a powerful way to incorporate the dear children that the conference is all about.

I found myself in tears throughout the day, and tried hard to breathe deeply and maintain composure. It was impossible. I know I wasn’t the only person who broke down throughout the day, but I was very surprised at how affected I was. At 22 months out, I do not cry every day anymore. The opportunity to be present with other grieving parents, to be visible as the parent of a child who was stillborn, was pretty overwhelming. At lunch, I was talking with some other participants and one asked me if I was a parent or a practitioner. I stumbled for a moment, “I’m parent, a bereaved parent”. This is just not a hat I get to wear in public very often. I think even my closest friends and family forget this part of my identity these days. To get to be visible as Chiara’s Mom for an entire day was a gift.

I left the conference at the memorial service and drove back to my hotel, sobbing all the way home. I pumped my milk for my rainbow babe. I sobbed some more. I went to bed. I have a checklist of things I want to do when I return home, from talking with my own Mom about Chiara, to calling my legislators about supporting bereavement leave as part of FMLA, to trying to connect with others who are working on legislation to improve services to families after a baby is stillborn, and to improve data collection on the incidence and causes of stillbirth. I am so glad that I attended the Stillbirth Summit 2014. I plan to seek out other opportunities to connect with other bereaved parents, work to advance research to prevent future stillbirths, and to increase awareness of stillbirth. In this way, I will continue to parent the memory of my daughter, my precious girl. Thank you to the Star Legacy Foundation, and all of the staff, board, researchers, practitioners, parents, grandparents, and everyone else who made this important event happen. I'm already looking forward to 2017!

The altar at the Memorial Service end of the Summit

Mother's Day: It's Complicated

Well, this post is a few weeks late, but honestly, it's taken that time to digest my feelings about Mother's Day. To put it succinctly; it's complicated. Whether you think it is a Hallmark holiday, or whether you believe that it's really all about celebrating motherhood and the mothers we know and love, if you are a loss mom, it's complicated. In reading various facebook posts around the day, I realized we are not alone: Mother's Day is hard for lots of people. It's hard for people who have lost their mother, for those who never knew her, for those who have difficult relationships with their mom, for those who are divorced/separated/unpartnered, for those struggling with infertility who dearly wish to be moms and dads, and probably for lots of other people, too.

I've tried two different ways of celebrating in the almost two years since we lost our daughter.

Year 1: complete avoidance. This entailed bailing on the multi-generational family brunch tradition and going for a mani/pedi and a sushi lunch with a friend going through a divorce. We both said our bah humbugs and got through the day.

Year 2: back to the brunch. My own Mom was really sad that we bailed on the brunch the year after our daughter died, so we decided to try it this year.  It was fine. But it was really a present to my own Mom, who wanted to see her kids and grandkids, and other family members gather together. It wasn't about me.

Now, it doesn't always have to be all about me. Really! But after having three children, and being pretty dedicated to the job of raising two of them and honoring the memory of the third, this is a role I'm invested in. And since there's this whole day dedicated to celebrating the art and craft of motherhood, the labor of love and selflessness that we apply ourselves to daily, it makes sense that I'd like at least part of the to be about ME as a mom, and not just about me as a daughter. Wrapped into all that is that on Mother's Day, as on Christmas and every family birthday, and other special days, there are clear reminders that our family extends beyond those present with us. My baby girl's absence is very present on those days and it makes them very hard.

I am thinking that next year I may have to find something constructive to do, to celebrate motherhood by taking part in something more than brunch. I wonder if I can dedicate myself to something on that day, maybe it will be less difficult. I'll be looking for meaningful volunteer opportunities to apply myself to.

This year, after a rare afternoon nap, I lounged on a blanket by the edge of a pond with our almost 1-year old baby boy. I relished his babyness. I kept him from eating acorns, sticks, rocks. It was a lovely capper to an emotionally strange and challenging day. Not a bad day, just a complicated one.

Gravity- the story of a loss Mom

Spoiler alert: I describe many key parts of the film Gravity in my post below.

The Chaplain at the hospital where my daughter was stillborn told me about the movie Gravity when I saw her at the annual service of remembrance last October. She said that yes, it takes place in space, but that ultimately, it's the story of a grieving Mother. I finally saw it on a plane on my way back from California a few weeks ago, a few weeks before the 7-oscar sweep the film made. I watched it with my 4-year old on one side of me, my husband on the other, and our 8-month old rainbow baby in my arms asleep. I knew what I was getting into, watching a movie that I'd been warned was really about loss, not space, in the public/private location of a plane cabin. I figured there would be some crying, and I was right.

As someone who has lost a baby, I see parallels between my grief journey and the journey through space that Sandra Bullock's character makes. I can relate to what she's experiencing at so many parts of the film:

-she comes "untethered": the disorientation that grief brings is like this. You no longer feel connected to your everyday life and the world. You drift.

-she is physically pummeled by space debris: facing grief again day after day is like banging into space debris REALLY HARD, over and over again. The pain comes at you, out of nowhere, when you least expect it.

-she talks to herself: grief, and the story of your grief is always running in the background of your mind, sometimes the foreground as well There's a lot of talking to yourself, a lot of reworking the loss, reviewing your child's death over and over from every perspective. Wondering if some small change could have led to a different outcome.

-she is not afraid to die: I felt this way after my dad died and even more so after losing my daughter. I can't begin to imagine what happens to us after death. But maybe, just maybe, there is this possibility of reunion with our loved ones who have gone before us. That prospect is a balm to all of us left behind. It makes me much less afraid of dying.

-she decides to live: she overcomes her desperate situation and makes a decision to survive. After everything, she decides to live. She has no plan, there is no promise that anything will be OK, but she does everything she can to survive and then at the very end, she crawls out of the capsule, through the water, and onto land. She has nothing, but she steps towards her unknown future.

Gravity is a powerful allegory about grief, and what it takes to overcome it and survive. As a traveler on this path, I was grateful for a film that captured so much of the experience. See the movie, it's worth it for so many reasons. If you're a babylost parent, see if it speaks to you about aspects of your grief. I'll be curious to hear.

10 Things to Help Bereaved Expectant Mamas

I wrote this post as part of the  Love Letters for the Mom Pregnant Again After Loss series on the blog Stillborn and Still Breathing.

Dear Bereaved Expectant Mama,

You are SO BRAVE. You have faced the very worst fears of any parent and you have SURVIVED. You may be ragged and teary and exhausted and heartbroken, but you SURVIVED. And then you did a very BRAVE thing: you got pregnant again. There is not much more serious than procreation after babyloss. And you did it. You let hope lead the way. You faced your fears and you took a chance and now here you are, pregnant again. And it is TERRIFYING. Because you KNOW. You KNOW what it is like to hear that your dear, sweet little baby has no heartbeat, or has a condition that is incompatible with life, or will not survive. You know things no parent no should know. You have experienced so much that no one should have to experience. It is TOO MUCH to bear, really, and yet, you are bearing it. You are doing what mothers have done since mothers were invented: you are getting on with it and getting things done. 

These next 9 months will not be easy, but you CAN do it. You can get through to the other side of pregnancy. It will be hard. There is so much time to get through, and you will be missing your lost baby and you will remember that pregnancy and you will wonder if you can possibly make it through another. What can help you? Here's a list of what helped me:

1) Make a list of milestones: break up the waiting. On my list was hearing the heartbeat, dates for genetic screening, various ultrasounds, viability, surpassing the 22 week mark when my daughter died, dates for glucose testing. What are your milestones? Write them down, cross them off. One friend made a paper chain to count down the days until her due date. I thought that was genius.

2) Find a community: maybe it is an in-person support group, maybe it's online. Two excellent resources are Glow in the Woods, especially the TTC/pregnancy/birth after loss threads, and SPALS, subsequent pregnancy after loss. I found it really helped me to read other people's stories, and eventually to share my pregnancy in an online forum and express all my fears. It helped to walk the path with others. Each birth on our board helped light the way, helped bring me hope.

3) Positive self-talk: talk to yourself, talk to the baby. In my case, some of this was more like pleading, "please little baby, be OK!". But it helped, it really did.

4) Remember that you are STRONG, that you have already SURVIVED the unimaginable. I can remember hearing about lost babies before I was a parent. I thought, "if that happened to me, I don't know what I'd do. I wouldn't survive." But you do survive. You struggle, you are miserable, you are lost, but you SURVIVE. You will survive this pregnancy, too. 

5) Assemble your team of caregivers: mine consisted of a OB who was especially caring and attentive and experienced in high risk pregnancies, an acupuncturist, and a therapist who specializes in babyloss and reproductive issues. What care do you need? Who are your healers? Find them and keep regular appointments. 

6) Make a nest and give yourself permission to do whatever you need to do there to take your mind off of the fear and anxiety. Watch TV and movies, but beware, everything you watch will have a pregnancy subplot. You will not be able to escape fully from the topic, it will sneak into every show you watch. But watching things will help time pass.

7) Walk. I walked hundreds of miles during my pregnancy. I listened to music, I talked to myself. I sang. I cried. I tried to envision a living baby. I've read that exercise is an effective anti-depressant and I believe it. 

8) Put yourself first. This is much easier said than done, but be kind and gentle to yourself. You are doing an AMAZING thing that requires a lot of STRENGTH. So rest when you need it, scream when you need to, say no when you need to. Care for YOU.

9) Prepare for your baby, or, don't prepare. Only you will know what feels right. Some people can set up the whole nursery, need to do that. Some can't do a thing until the baby is born. Do what feels right to you. 

10) Be open to joy. It will not be as easy to find the joy in a pregnancy after loss. The whole endeavor seemed fraught with peril to me. I really struggled to be happy and to enjoy it as I went through it. But try to be open to those moments. They do come, and you DESERVE them. You are a RESILIENT Mama. You are doing a REMARKABLE thing.

You WILL make it through. Time will pass. And hopefully, at the end, you will give birth to a live, screaming baby. And every moment of fear and doubt will have been worth it. You will not be miraculously healed from your grieving, but you will be relieved. You will also be consumed by fulfilling all the needs this new little life has. You will be ragged and teary and exhausted and still heartbroken, but you will be very, very busy. The busyness will keep some of the grief at bay and time will pass. It will not heal all your wounds, but you will get better and better at walking this path. This is a path that many have walked before you, and many will walk after you. It is not the universal mothering experience, but as long as there have been mothers, there have been some on this road. Good luck to you, BRAVE, STRONG Mama. My heart is with you as you await that screaming cry.

XOXO

Aurelia

What Can Happen

You can lose it all, in the blink of an eye. You’re zooming along, ticking things off your lists, feeling pretty good about getting things done and then, slam! The sound of your child falling, or the sound of the phone ringing, or the screech of tires. You hear a clear sound that signals the end of your life as you knew it, and the beginning of a terrifying new reality.

As a loss Mom, I know what this is like. I have heard the doctor tell me my child no longer had a heartbeat. I birthed my stillborn daughter. I held her close and memorized her. I long for her. It’s been 19 months since we lost her. We have a rainbow baby, he’s now 8 months old. 8 months! We also have an almost 4-year old. Time flies. Lists get made and things get crossed off. Life chugs along. The grief is woven into the fabric of daily life.

I woke this morning at 4:30am, got dressed, nursed the baby in his sleep, and snuck out of the house to drive to Boston to catch a plane to Newark, heading for Nashville for a work meeting. I’ve been a regular traveler in my career, but have slowed it way down since having kids. This was my first trip since our 8-month old was born. It was to be my first night away from him.

After pumping some milk at the sink in the women’s bathroom in Newark (glamour!), I took a work call and then called my husband to check in and see how things were going. He sounded breathless, agitated, scared, “you’re going to hate me, ” he said. He said it again and again. Then he launched into a story about how our baby fell off the table, in his car seat, unbuckled, and fell onto the floor. Our baby fell off the table onto the floor. He hit his head. He was bleeding and at the emergency room. “Tell me he is ok,” I said. “TELL ME HE IS OK”.  “They think he’s ok,” my husband said. My baby fell off the table and hit his head and he is bleeding but they think he’s OK.

And so I went to the ticket counter and booked a ticket home. No meeting in Nashville for me. When your child is hurt, the only place you really want to be is by his side. All I could think is that he needs his mama. In my gut, I felt that he was going to be OK, but I couldn’t wait to find out, and I couldn’t fly further away.  I needed to get home asap.

Probably any parent would respond this way. Probably you don’t have to be a loss parent to be the kind of parent who takes no chances with your child’s health. I really try to not be an alarmist. But here is a moment when it is all crystal clear. Your priorities are visible, and you see the true fragility of life before you. You know what can happen, and so you go home. You skip the meeting, you spend the afternoon consoling your husband, “it was an accident…”, rocking your baby, kissing your almost 4-year old, and feeling extraordinarily grateful. You know what can happen, but this time, it was OK. Thank you, world, thank you, spirits, thank you, luck, thank you, thank you, thank you.

Poem After Visiting Friends Who Have an Infant Daughter

Feb 2, 2014

I wrote this poem after we visited friends on a trip to CA. They have 3 living children. We have 3 children, too, 2 living, 1 dead. 


It's a perfect moment
Raining outside, but we're warm inside
Sweet Honey singing sweet songs
One boy asleep with Gramma
One boy asleep in the middle of the bed
Pillows protect him from rolling off in either direction
We check
Check again
Make sure his chest rises and falls
Make sure he hasn't mastered a roll over
Make sure he is alive

My husband finishes some work
I chart our afternoon
Exploring San Francisco
We rest

We recover from this morning
Spent with dear friends
Spent listening to squeals of children
3 boys wrestling on a trampoline
It can't have been a good idea,
But boy was it fun
2 babes in arms, our boy, their girl
Laughter, comparing notes on preschool, sleep habits, tv rules
Staying far away from the difference between raising boys and girls
They will know what that's like, be able to compare
We will not
They will know how it feels to hold a daughter, living, in their arms
We will not
We will not know how it is different
We will only know the pain of missing out on this
The pain of missing you

I had prepared myself
My husband,Caught up in the morning's chaos and being late, had not
We got in the car to go home and he was so sad
Holding their little girl made it all very real again
What we lost
What we should have but do not
Our little girl

Conversation with our almost 4-year old in the car on the way home
They have 3 kids and we have 3 kids
Yes
We have 3 kids but one is dead
Yes
We will answer this question
Do this sorry math
Over and over
Your big brother, trying to make sense of things
Just stating the truth about our family in a public setting
Makes others squeamish
Shocks them
Makes them sad
But he doesn't notice, not yet
And so, in the obstetrician's office, at the birthday party, at day care, out to dinner, while exiting the airplane, at the playground
He states these facts about our family
2 babies
1 big boy
1 dead
We are honest
We are matter of fact
We clasp hands, out of sight, squeeze
Say yes, that's right
We wish it was different
If only it was different