Tag Archives: pregnancyandinfantloss

Sliver.

I loved your first birthday. The lead up and now the aftermath are treacherous and unbearable but, I loved your birthday.

You have, we have, this amazing family and this amazing group of friends I’ve known forever and all of these amazing people who are new to our lives, who you brought to us, either by your magic of setting me up with people I needed before you were born and died or from our support group, together because our children were here and now they are gone. We are surrounded by this loving, supportive, generous, and thoughtful village of people who loves us so much, who love you so much, who miss you so much. Your grandparents flew from New York and New Jersey and your aunt, uncle and cousin came from San Francisco. Papa and Nona said they wanted to come months ago and bought tickets in advance. I was so touched. They have flown to every one of your sister’s birthdays and it meant so much to me that they would come for yours that I just said “yes!” without talking to your dad or even considering what we might want to do, that we might not want to be around other people on your birthday and anniversary. But then Tio and Mandy said they wanted to come, too, that they were planning on it, so we decided to make a “thing” of it. To invite your other two grandmas and make it a family affair. A time to all come together and love and miss you under one roof. What a gift.

T suggested that we do something together, plant trees or release butterflies. I agreed but we had already done both of those things and so I wasn’t sure what to “do”. A few days later, I was driving and I saw a huge, illuminated billboard that the March of Dimes walk was the day before your birthday, your birthday weekend. I barely knew what the March of Dimes was but I knew it was for babies, I knew it was something we could do together. It turns out the March of Dimes supports families with babies in the NICU, works to prevent prematurity and educates for healthy, full term pregnancies. Your contribution to this world was an attempt to save babies with your heart valve donation and your corneas going to vision research, so this was a perfect way to continue your legacy and have an event for us to put our focus on. We had nearly 20 people walk with us, these same amazing people: your family, my dear friends and my new friends who have held me up this year. We raised nearly $4000 from the sheer generosity and compassion of those that love you, that love us, that just know us or one of your family members or friends. We sported our “Harvey the Hero” t-shirts and we walked. We walked 2.5 miles and Papa took us all out to lunch. All these people who love us, who love you, all together, for babies who have a chance.

The next day was your birthday. I awoke at 6:03am, hearing Abuela come up the stairs, and willed myself up an out of bed to light the Yahrzeit candle that Grandma sent. She sent two and, I don’t know Jewish tradition, but I decided to have these 24 hour candles lit for the whole time you were alive outside of the womb. I couldn’t do it. I just laid there paralyzed and exhausted until your dad got up a few minutes later and said he was going for a run and I asked him to do it.

I decided to keep your first birthday ceremony again limited to those who met you, and of course the family that was visiting, who instead of flying out quickly to meet you, waited so they could come later and support us through our grief. We all gathered. Papa made chili, L brought the most amazing kale salad, and J created the most beautiful and perfect birthday cake for you that I could have ever imagined. We gathered in the park with things from your altar I used to mark the seasons throughout this first year: the special Teddy Bear Alison gave us at your service, shells from the beach during Bubba’s birthday weekend, the skeleton family I queried about on Facebook and Dennise sent to me, the ceramic turkey I bought for Thanksgiving, the Christmas ornament from our support group, the heart I sewed at Vesta’s school for Valentine’s Day, an Easter egg your sister made, and the “I Did It” March for Dimes pin. Your picture, the locket with your hair from Thalia, a glass ladybug, and a sparkly heart from Nona, one of the first things on your altar. She brought it 2 months after you died.

I never know what to do with your ashes. They are in the same tin they were brought home to us in and they sit on the shelf in my closet. I have tried to put them on your altar or find a pretty urn but nothing feels right. Because nothing is right. There is no appropriate place to but your dead child’s ashes. Except, they found their first place, out there in the park with us. The first time “you”, your remains, felt like they had a place: out in the park with those who love you. I placed them on the try with flowers from my cousin, a photo of your blossoming tree at Papa’s house, a picture of Gram and baby G wishing you a happy birthday from NY and a photo your Grandma sent of us and Tio at the hospital, all gazing down out you, trying to soak you in, burn you into our mind’s eye, because you’d be gone soon.

We all stood out there in our park with your things there, balloons from Nona. We played music and your midwife read a beautiful quote from Anais Nin.  Your dad wept and he was not alone. Everyone cried. Everyone except me. I felt like I wasn’t doing it right. What kind of mother is not crying at a memorial ceremony for her son? Was I numb? Was I doing better? Was this ritual helping me? Was my planning it, preparing it, running it, taking away from my ability to grieve on your first birthday? Was I using that as an escape? I was self-conscious about my dry eyes, about laughing and smiling as we blew bubbles for you. This is the time. We gather to remember and to grieve and to cry and to hold each other up on these marker days, on these anniversaries and I just felt strangely comfortable. It wasn’t until a few days later that I realized what happened to me that day, why I loved your birthday.

I cry almost  everyday. My daily tears returned at the beginning of March, almost two months ago. My grief overcame me like a tsunami. During the weeks leading up to your birthday, I was crying anytime I was alone. I would pull myself together to do my life and fall apart inbetween. Or sometimes, I would cry again while doing my public life because I couldn’t pull it together. I would ache for you. I started negotiating with God again, bargaining, magical thinking, pretending. All of that beginning stuff. Back. I began to dread night time when all I had bottled up during the day, to get through the day, came pouring out. I’ve been nauseated most days again, at its worse I have the toxic blood feeling, like each of my cell walls is burning, that move through my body in sickening pulses. Back to feeling so uncomfortable I just want to crawl out of my skin, to get out of this body, this life of mine. Sitting, standing, laying down nothing helps, there is no comfortable way to be.

But your birthday arrives and I am comfortable. It was almost like a break. Everyone was focused on you like I am always focused on you. Everyone was crying. Everyone was missing you acutely. I wasn’t alone. For the first time in months, I didn’t feel alone, being surrounded by all of these people who want you here, too. Your midwives who, in there own terror, tried so hard to save you as I screamed, were there standing next to me, wishing I was like all of their other clients, save one other, crying because you are still gone. Everyone wishing this was different. Not just me. As the months went by after you died, I began to long for that first week, when it was like this. When everyone’s grief matched my own. When people were flying in. When everyone walked around in a daze. And here was a piece of it again. Here I was again, surrounded by people who love us, who also can’t believe it, who also want you back, who also don’t know what to do next.

I spent your birthday weekend being overwhelmed. I couldn’t tease anyhting apart becasue everything felt overwhelming: the grief, the loss, your absence, the joy of being around your sister and cousin, laughing and talking with your family like nothing was a miss. Later in the day, I would look at pictures of the walk and your ceremony and the cake and the littlest ones in our family gathered around to blow out your candle for you, and I realized one of the most overwhelming feelings I had was gratitude. I looked at those pictures and I felt blessed. I felt blessed for the first time in exactly a year. Everyday of my life I am surrounded by good things, by blessings, by people and opportunities and experiences and circumstances that 99%  of the world’s people will never know. I am one of the very few lucky ones. And I can’t see it anymore. I can’t feel it anymore. Your absence blots out the good that I experience because it all just keeps happening, even though you are gone. There is joy but it is always tempered by you not being here. It is always my second thought, the next feeling, after I laugh or smile or feel joy and pride and ease. It’s learning to live with joy and tragedy in nearly the same breath, in nearly every breath, that I find so impossible. They used to feel separate: now I am happy, now I am sad. Or when there were mixed emotions, so proud of your sister for doing something she couldn’t do just yesterday and so sad that she is growing so fast and a phase has ended, they didn’t contrast so sharply, they weren’t so intense. In this example, the pride was stronger than the sadness. Not so, anymore. But this weekend, since the whole thing was so intense, so jumbled, so impossible to know how or what to feel, how or who to be, somehow what sifted out was that old familiar feeling, like from a dream, like a long lost memory evoked from a present day smell, of gratitude. Gratitude which I used to practice like one does an instrument. Gratitude which once transformed my life in profound ways. Gratitude which I have attempted to feel using a variety of tactics so often this year. That I finally came to realize, I was feeling it, it just, like everything else, didn’t feel like it used to . So much so that I couldn’t even recognize it. But I felt it this weekend. When I should have been looking at you enjoying your first special day and feeling gratitude that you had come into our lives, I was looking around at what your short little life created in the people who love us, who love you, and I felt it anyway and like I used to.

Over your birthday weekend, I also gained a clearer understanding that I must live some of my life for you, carry out your work here for you, or what I imagine your work to be. Not what it would be, not what I envisioned it to be. I don’t know that I imagined what your contribution to the world would be but it certainly wasn’t what I now know it to be. Now I know that you came to spark a compassion in me for other babies and other families. This weekend bought me clarity, it brought me a settling in of how I do our work now. Of how I work with grieving families on my behalf and how I work to help save babies, to help prevent grieving families, on your behalf. Your life’s work, your souls’ purpose this time around will not take your lifetime to be revealed. It arrived in me after you died. These last 12 months bringing me to a weekend where I felt gratitude and blessing again. This weekend that I thought would cripple me but rather brought some clarity, brought some light, became a pivotal moment in my grief journey in a way I wouldn’t have guessed in a million years.

I didn’t know what to expect on this day. I didn’t know if I’d be able to get out of bed, or since my life is a series of “do it anyway” actions, it’s more accurate to say if I’d feel like getting out of bed or not because I’d do it anyway, regardless. I assumed it would be all sorrow, all anguish. But instead, it was a crack. It was a crack in the armor of my grief. Instead, I stood with people who love us so dearly, and for once, I didn’t still feel alone, isolated, made of different stuff. The feeling of gratitude, the ability to feel blessed, it cracked it open and now there is this sliver of light shining from the my chest. It is just a sliver but it is a beacon, nonetheless. I felt like a real human again even if jsut for those moments or even for a few days and that light, that crack, illuminates the dark path I am walking. “Here is the way”, it says. “Follow this light because there is wholeness somewhere. And if not wholeness, than more of these feelings. More of coming alive again. Follow this tiny, sliver light.” That’s all it takes. I don’t need beams or a spot light or the sun. I just need this tiny sliver.

People brought you gifts. They brought us gifts. A beautiful, silver forget-me-not charm that I don’t envision I will take off for years to come. A rainbow swirled lollipop with a stuffed zebra holding on to it. Handmade ceramic hearts, ladybugs and flowers glued to a beautiful, thick orange ribbon with a cloth vine winding through it. Your aunt and uncle sat down and recorded your story, their experience of this past year without you, and gave us a CD of it. Candles, cards, so many many things. Even though you are dead, people brought you gifts, made you gifts, thought about you, talked about you. I have nothing of you but this. Nothing but my own grief and the grief of others which seems less intense, less persistnat, less ever-present than my own. I have felt so alone, even with your dad, these approaching weeks, and now somehow, I have more of you because they all told me about you. They all told me about themselves, about what their lives are like without you. They all brought you something. They all brought me something. The precious gift of you. The precious gift of sharing with me how you, how your life, lives in their hearts. When we have children and we share them with the world. We talk about them and take their pictures and worry to each other about them and go into too much boring detail and they become the center of our lives. I don’t get to do that with you. In the minds of most people, your story has ended. The details of it seemingly too painful to continue to talk about. But at these moments, these moments that feel so few, that will become fewer, less pressing for others, and for me too, as time goes on, these are the moments that bring you back to me in the only way you can be here. In the hearts of others. In my heart, reflected back to me by being allowed to see into the hearts of others.

 

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Voice.

Break the Silence (click here for video)

I know it is unimaginable to lose a child, to even consider the possibility.

After we had Vesta, our first child, we would turn off movies, close the web browser, cringe at stories whenever there was something about a child dying or being harmed.

But the above video is so important to see and to share with your social networks. It is hard to watch, it is a very sad topic but it is also real and needs to be heard.

After Harvey died, I had SO MANY private messages from people (long time family friends, close friends of ours, acquaintances, strangers, etc) sharing with me their struggles with infertility, pregnancy loss and even infant loss. These messages compelled me to continue to make my journey public. All of these parents, suffering silently and quietly at the most devastating loss of their lives. It is heart breaking.

We live in a culture that dictates the opposite of what grieving parents need. Our culture institutes a timeline around when grieving people should be “better” or “over it”. It tells people NOT to ask about the pregnancy/child for fear of reminding or further traumatizing the parent. It provides no dialouge, no access to a normal or standard reaction to the news of hearing about the loss of a pregnancy/child. There is misunderstanding, especially with miscarriage but also with infant loss, that you can just “have another”, or” you didn’t really know that person” so it shouldn’t be that hard, it shouldn’t change the grieving parent like it does.

Grief, especially after the loss of a child, takes exactly as long as it takes for each person and not a second less. The most wonderful gift you can give a parent who has lost a pregnancy or child is to tell them you remember, to ask about their child or their grief process. When told (especially if you are caught off guard) about the loss of a baby, tell them you are so sorry, ask them if they would be willing to tell you more, give them a hug or touch their shoulder. Do your best to avoid the deer in headlights look, don’t quickly change the subject. It is hard for you to know what to do. It is harder for them to have their grief and not be able to interact with the world because of it. It is isolating enough. Know that, just as if you lost your child, the parent will always love, miss, long for that particular child. The parents could have 17 more children and still there will be nights when they lay awake, crying for the baby they lost.

The loss of a child is just that. We are still parents. We look for ways to continue to mother and father our dead child. We incorporate them into our daily lives. We mark anniversaries, milestones and would-be milestones, just as we would if they were here. This can look odd, unhealthy, or morbid from the outside in this culture but we wouldn’t abandon a living child and we won’t abandon our dead one(s) either. We need you to participate with us, to celebrate and cry and long and laugh and remember with us. It’s okay. We will all die one day. We can talk about it. We can bring our dead children with us and you can help us.

It’s not easy, of course. Sometimes when you ask about our child or before you know and ask how many children we have or the like, we will start crying or choke up or not know what to say or awkwardly stutter our response. I know I am asking a lot for you to stand out there in public and ask and handle our reaction and not abandon the whole situation. But I will tell you this: most of the tears that come will be tears of joy and gratitude that someone asked, that someone remembers, that someone is interested. They will be tears that have been welling up for weeks and months and years because we so seldom are asked and heard. I know it’s hard and I thank you for doing it anyway.

It’s as if our culture works against us as grieving parents. It’s a catch 22: At the most vulnerable time of our lives, when we feel the most isolated and alone, it doesn’t feel safe to talk about our loss and our grief in this culture because of the reactions that we get. So we don’t share and we each profoundly suffer in silence so the culture does not become safer to grieve in, people have no opportunity to learn how to comfort a grieving parent. After Harvey died, every other person said or wrote, “I don’t know what to say but …” and then followed that with the most loving, supportive and helpful words. It’s okay to fumble and feel like you can’t do anything, I feel that way still each time I meet a bereaved family. But you have the words, the hug, the compassionate look. They are in there, just express them. Or say “I don’t know what to say” “I don’t know how to react” “I’m sorry I’m not sure how to respond.” That is better.

Every 21 minutes a family loses a baby in this country. 1 in 4 pregnancies and infants are lost. It is part of being a parent, a family, a society but we don’t talk about it. We don’t want to be afraid during our pregnancies, we don’t want to imagine this happening to us, we can’t fathom. But those many, many, many of us touched by such a loss, need to be seen and heard and honored. I come from the homebirth world, which is a very feminine affirming world. A world that supports women in their choices, in doing what they feel best for themselves and their families, in navigating some of the most intense moments of their lives. Even there, we don’t have a space. We need a space in this culture. We need each other to create that space. You and me. Us and them.

I have had endless support and it continues and continues. I know it is because so many of you love me/us and feel nothing but compassion and empathy for us. I think my writing and sharing openly contributes to that as well. You all have allowed a space for me to wail and scream and whimper and I’d probably die without it. So thank you from the bottom of my broken heart.

Let’s all be less afraid of each other. Let’s all be brave for each other. Then when our worlds collapse, we are less alone and that makes all the difference.