The local stores have been reminding us for weeks already that the holiday season is upon us. It is now November – the month we give thanks. However, for families who have experienced the death of a child, it can be almost impossible to find reasons to be thankful. This is especially true for families who have suffered a loss in the last year.
Families who have endured infertility would love to see a Christmas morning through the eyes of a child. Families of stillborn children wish they were giving thanks for the healthy arrival of their baby. Families who have lost older children identify the contrast between the holidays last year and this year. The scenarios are endless, but they are all painful and heartbreaking.
The “stages of grief” often refer to emotions such as denial, shock, anger, guilt, etc. None of these emotions lend themselves to thankfulness.
How are families supposed to deal with their loss while the rest of the world appears to be absorbed in joy?
Just as grief is different for every person, our needs during the holiday season will be different as well. We may want to stay busy or do nothing. We may want to surround ourselves with family and friends or spend time alone. We might find comfort in familiar activities, or they may be too painful. Even more, what sounds like a good idea initially may become too difficult. There is no way to predict or prepare. All we can do is the best we can.
If you know someone who is grieving this holiday season, be there for them by understanding and supporting their needs during this challenging time. Avoid platitudes or clichés that are intended to be helpful, but, instead, put pressure on the grief process. Acknowledge their emotions and be willing to change plans if needed.
If you are grieving, the holidays will not be what you had hoped or expected. Be kind to yourself and give yourself permission to do what feels best to you in the moment. There is not a manual or map for the grief journey, so take the path that comforts you, respects your grief, and honors your loved one. Finally, don’t hesitate to ask for help. Most of us are surrounded by people who are willing and eager to help if we identify what they can do. It may be big or small, but if it makes your day a little easier or puts a smile on your face for a few seconds, it’s a gift.
This holiday season, I wish you all comfort, gentle days, and the love of friends and family.
And most of all, you were sure it would be impossible for you to function as a whole human being not buffeted by the waves of sorrow that swept over you in the early days of your tragedy. But you will. You will do all that and you will do more. ~ Harriet Schiff
October is National Pregnancy and Infant Loss Awareness Month. Many of us are participating in events or remembering our children in our own special ways. These events are heartwarming and an opportunity to support each other. This year, I’ve been wondering if they are more than that.
I used to think that government proclamations were a simple gesture to recognize the struggles faced by our society. I didn’t ever see a personal connection to it. It wasn’t that I didn’t know people with breast cancer, autism, or any other cause. I just didn’t stop to think about if I could or should do something about it.
When I look at the title National Pregnancy and Infant Loss Awareness Month, the word AWARENESS jumps out at me. What is awareness? What does it look like? Is it a simple acknowledgment? Is it a full-blown public media campaign? Is it something in between? Is it even necessary?
I’m not sure I completely understood the value of awareness until recently. But awareness is one of the most powerful tools we have. It can educate the public and health professionals; encourage financial support of research or care programs; inspire advocacy; break down stereotypes, myths, or taboos; honor the memory of loved and missed babies; and provide encouragement for families on a grief journey. Obviously, there is much that needs to be done and awareness could be a key to all of these things and more!
You may be thinking, “I don’t have the time/resources/talents/ability to make a difference.” I know I have thought this before. At times, the issues can be overwhelming. This is one of the most important reasons why we all need to work together and create that awareness. The issue is too big for any one person or even one organization to ‘fix’ alone. Working together, however, we can make a significant difference! Your contribution can be anything you want it to be. The important thing is that it comes from the heart and is done to create awareness for these babies and their families.
For example, you could:
- Attend a memorial walk/event such as the Let’s Not Be Still! Stillbirth Awareness Run/Walk or check this site for a great list of events in various areas.
- Call a friend who has experienced a pregnancy or infant loss to say you thought about them and their child today.
- Make a donation to your local hospital or a pregnancy/infant loss organization in memory of a child to support others enduring pregnancy and infant loss
- Join the Action for Stillbirth Awareness and Prevention (ASAP) Coalition.
- Tell a friend or family member about healthy pregnancy initiatives and safe sleep practices for infants.
- Contact your legislators to encourage support of the FMLA changes, the King Stillbirth bill, and the Pallone SIDS/SUID/Stillbirth bill.
- Write a letter to the editor of your local newspaper about Pregnancy & Infant Loss Awareness month.
The possibilities are endless, but the important part is that awareness can be big or small, loud or quiet, expensive or free, aimed toward society or an individual, organized or impromptu. Some of the most impressive works of the last two centuries have started in small ways or small locations. Don’t underestimate the ripple effect of your actions!
How will you be creating awareness this month? Feel free to share your ideas with us – or ask for help if needed. But make this month different by creating awareness in your own way. Together, all of these efforts will come together for true National Pregnancy and Infant Loss Awareness.
In the first few days after the stillbirth of my son, it seemed incomprehensible that I would ever be able to function without dissolving to tears every time I thought of him – which was every few minutes. Other people would give me platitudes like, “Time heals all wounds”, and “You only miss him because you love him”, but it didn’t change the fact that I couldn’t have dinner with my husband, go to the grocery store, or even brush my teeth without being interrupted by floods of tears and sobs that took my breath away every time I thought of him. It was easier to imagine that this was my new existence than that I would ever resemble “normal” again.
I remember the day I went a full 24 hours without crying about my son. I can’t tell you when it was or how long it took me to get to that place, but I can tell you that I remember the moment like it was yesterday. I had been looking forward to that day for many weeks. Yet, when I made the realization that I had muddled through an entire day without falling apart on the outside, I was devastated.
I thought it would be a welcome sign of “progress” in my grief journey. I thought it would mean that I was “better”. I thought it would feel like my “normal” again. It was none of those things.
I was unbelievably sad with my new-found ‘progress’. One of my biggest fears was that he would be forgotten. I had already seen casual friends and acquaintances forget that he was a part of my life. I had seen good friends and family members get back into their usual routines and appear that my son’s death didn’t interfere in their activities or happiness. But now that I was seeing it in myself, I was terrified that I, too, would soon forget him. The smell of his skin, the feel of his smooth forehead on my lips, the weight of his body in my arms, the part of my heart that he took with him to a better place.
I was confused. This was supposed to be a milestone that made me feel better, not worse. I felt guilty that I had moved that far in my journey in such a short time (I still have no idea when it was – but it instantly felt too soon). I felt guilty that I didn’t miss him “enough” to cry about him today. But yet I knew I couldn’t continue crying every day. And I knew that the world around me expected me to reach this day.
How could ‘progress’ feel so horrible?
Just as all the days leading up to that one, I had no choice but to accept my feelings and emotions for what they are and keep putting one foot in front of another. In many ways, I am still doing that same exercise 9 years later.
The difference now is that I have learned to embrace the guilt, the pain, and the joy. I understand that ALL of my emotions in this regard come from my love for my son. Not in spite of it. I know that I will NEVER forget him. I have had time to work through the guilt, recall memories with fondness, and be proud of my son. I now realize that much of the grief journey requires creating a new ‘normal’.
I’m sure from the outside looking in, my life looks anything but normal to most people. But that’s ok. It’s MY normal. I wouldn’t be who I am without all of my life experiences – my childhood, my family, my marriage, my career, my living children, and my angel in heaven.
I recognize that my grief “progress” is not measured by how much I love or miss my son. It is measured by my ability to incorporate that experience into the rest of my life. And I can’t imagine my life today without any of my children. I love all of my children more than I can express, I miss my first child more than I could ever describe, and I love what each of them has taught me. It is not my grief that has helped me to progress – but my motherhood. And I feel blessed.
I always resented the idea that I became part of a special ‘club’ when my first child was stillborn. Knowing that there were thousands of moms like me made me feel less alone, but it didn’t make me feel better that so many other women knew the heartache of losing a child. That is not a comforting thought! So while I reluctantly accepted my membership in the Bereaved Parents Club, Stillbirth Parents Club, Pregnancy and Infant Loss Club, and others, I rarely felt proud of or excited about this role.
That has all changed.
My fellow club-mates are remarkable, amazing people. Everywhere I look these days, I am interacting with people who have been forced into this circle just as I was, but are using their passion, energy, talents, and hearts to make the world a better place. An impressive community has been born out of tragedy.
The latest example is the efforts surrounding Return to Zero. Sean Hanish is one of these amazing parents who created something powerful out of his grief. I am in awe of the response to his work. The thousands of people who signed up to be Local Leaders in just a matter of days and the effort it took to obtain more than 100,000 pledges to see this movie in a few weeks is just astounding.
Every family has their own story. And every family has their own ideas for how to find peace on their journey of grief. But together, we are a team that has more passion than any I have ever worked with! Together, we can shatter the silence, say it out loud, and give our precious angels a voice. With a unified voice, our opportunities will have no limits!
That is the real story behind Return to Zero, the STILL Project, Action for Stillbirth Awareness and Prevention (ASAP) Coalition, and many more programs.
Let’s keep the momentum going! Here are some ideas – feel free to add your own!
- Continue to obtain pledges to see Return to Zero
- Join the ASAP Coalition (it’s free!)
- Plan to attend the Stillbirth Summit 2014 – June 19-21, 2014 in Minneapolis, MN
- Join an event honoring the memory of a stillborn child – or host your own! (contact me for more information)
- Participate in the STARS Study and pass the information along to others you know
- Write letters to your congressional representatives to support the King bill, the Lautenberg bill, and the Farley-Kluger bill
Thank you for being a part of the movement. I believe this ‘club’ is on the cusp of something incredible! Let’s make it happen for our children!
We are honored to bring you this blog post by Sean Hanish. Sean is a stillbirth dad first but also the author, director and producer of the movie, Return To Zero. Please visit their website to learn how you can help make sure that a movie distributor will pick up this film and help Break The Silence about stillbirth. Your help as a local leader or your pledge to see the movie will convince movie distributors that there truly is an audience for this movie! Together we can bring stillbirth out of the shadows! Pledge to see the movie here. Be sure to list Star Legacy Foundation as your Local Leader! Click here for A message from Sean about the movie A tremendous opportunity such as this only rarely comes around!
Father’s Day is Sunday, June 16th. We know that most men grieve very, very differently from women. This only adds to the confusion that both men and their partners experience in these situations. “Why doesn’t he cry all the time like I do?” “It seems it doesn’t matter as much to him”. The truth is that most men have the ability that most women don’t – to put their grief in a ’box’ and deal with it only when they choose. For women it sometimes seems as though our men aren’t sensitive to the issues – but they are – in their own way. To add to the challenges, many times men aren’t even given or do not allow themselves the chance to grieve because they are expected to “be strong” and to take care of everyone else. It can be frustrating when there is nothing you can do to “fix” the sadness or to make yourself or anyone else feel better. On this Father’s Day we want you to know that you are a father, and we share in your sorrow. Star Legacy Foundation
You’re Going To Be a Daddy, by Sean Hanish
“Next time I see you, you’re going to be a daddy.”
Those were the last words I heard before my phone rang late on a sun-filled morning in Malibu on July 11, 2005.
For some reason those words on that day, “you’re going to be a daddy”, landed in a way they never had before. Perhaps it is because I had space in my brain to take it in having just finished the biggest project of my commercial directing career minutes earlier. Perhaps it is because those words were said to me by Cindy Crawford in the driveway of her picturesque Malibu estate. When she said those words I realized that we had crossed the threshold from colleagues to friends.
Most likely though, it was because my wife had gone to the doctor that morning and, late in the third trimester of our first pregnancy, I could very well become a daddy at any moment. I would come to find out days and years later that when I heard those words for the first time that Cindy was wrong, I was already a daddy.
We’ve all had those moments when we’ve received a call, the call. And even before a syllable reaches your ear the silence, the stillness, the fear reaches you first. The feeling starts deep inside—you know something has already gone terribly wrong.
Filled with a serene sense of accomplishment, I pulled onto the Pacific Coast Highway. The phone rang. I answered. A wall of silence hit me and nearly knocked me off the road. Then, through gasps and tears, my wife struggled to tell me: “He’s gone.”
The next few minutes are a mosaic of memories. Images and emotions I have tried to piece into a coherent narrative but it’s gone. You can’t glue the broken glass back together as it’s breaking.
I hope that I stayed calm long enough to let my wife know I would be there right away. I know that before I hung up a flood of tears had begun. I know that after we hung up through the disorientation of disbelief and white hot anger I screamed, alone, thrashing at the wheel, trying to put the broken glass back together piece by piece.
It felt like traffic conspired against me, a full two hours of torture on the LA freeways until I walked into the kitchen and saw my wife seated next to her mother and our doula. Another realization hit like a jab… our son was still inside her.
To be asked how you want to deliver your dead son… to be asked if you have thought about having a burial or cremation for your son who is still in utero, these are questions so macabre as to make Edgar Allen Poe blush, but they are so very real. The shock helps. A simple but effective protection mechanism, tens of thousands of years of development, leaves you detached, dizzy but able to go through the motions of breathing, walking, surviving. Shock is your friend at first. And that’s what it is in those minutes, hours, days, weeks afterward—shock. The goal is simple: survival.
There is nothing you can do, nothing you can say to make it better. It is torture. I wanted to fix things… to do something, anything. And yet there I was at the kitchen table helpless, at the delivery of our son hopeless, then holding him in my arms lifeless.
As a husband, a partner, a man you are a passenger on the pregnancy express. You can look out the window and watch the scenery go by, her belly grow, her skin glow, and if you’re lucky, catch your baby’s elbow as it presses against her belly like the dorsal fin of some alien sea creature making it more real for you. But you’re not the engineer.
When the crash comes you are struggling with your own emotions, grief and loss, desolation and depression, and watching as your wife, your partner, your life jumps the tracks. Twisting metal tumbling out of control in slow motion. Prepare for impact.
The crash came, our son born into silence. Beautiful. Heartbreaking. Holy. And then gone, forever.
The two of us entered our home, prepared for a family of three now stripped bare in a few hours of all infant accoutrement by my wife’s family who swept in like a SEAL team. Our stark baby’s room remained a visual metaphor for the gaping hole in our hearts.
The need to do something, anything became overwhelming. We were gifted a rose bush. I decided to build a patio for that plant, a memorial to our son. The only thing I’ve built in my life up to this point was with Legos. To call me a novice in the construction arts is to insult novices.
I enlisted the help of my handy father-in-law who helped lay the foundation and steer me clear of disaster. After that it was me, a ton of bricks, buckets of cement and a case of beer. It was like some kind of zen trance. Brick after brick. Line after line. I kept at it.
The days were punctuated by visits to my wife’s bedside to check on her dutifully though looking at her brought back everything that hurt… everything that I wanted so desperately to change and forget. Not only have you lost a child, but you’ve lost your wife. For some it’s temporary, others permanent, and most of us somewhere in between. Your relationship never recovers from this, it can only grow together or apart. Neither is wrong.
Brick after brick. Sweat. Wipe. Following a steady rhythm of sadness. I finished the patio—by far my greatest (and only) construction achievement of all time—the day before the memorial service. Goal reached, yet no reward.
The balloons disappear into the sky–my wife and I strain through tears to see them. Surrounded by family and friends, nearly everyone invited made the trip from miles and states away. All of that love helped. The support was incredible. But eventually, their sorrow fades as it must. The neighbors stop the parade of dinners from the oddest pot luck ever. And there we are, left with each other—I never thought that looking into my loved one’s eyes would be like staring into the void.
We all grieve differently, especially in this instance. The engineer blames herself for not seeing the signals. The passenger who survives the wreckage blames everyone, everything and nothing. What does it matter when everything you thought up to that instant, everything you believed in is lost?
The change lasts forever. You’re never the same. Your relationship is never the same. Yet, here we are, my wife and I nearly eight years later still together. Three children in our heart, two in our home. We love each other, but so very differently than before. I’m not sure there is a tomorrow but each day builds on the next like bricks in that patio, but this memorial will never be finished. It is work now, this marriage, like all marriages but unique in its difference.
Two years ago I quit my commercial life and dedicated myself to building a different kind of memorial—this one with images, shots and scenes—one which I’m (hopefully) better at building. It’s a miracle that this film was made—a testament to leading with your heart. We built it and they came, the actors, the crew, and the parents of lost children like wind at our back when we needed it the most.
I’m just one dad. This is one story. One life. And no matter what is gained with this film it will never fill the void that was created the day I lost my son.
What I have learned is that I was a daddy on that day in July 2005. And I am a daddy now–a daddy who never met his first son until after he was gone. Yet, that son has left me a precious gift–I lost one life and found a new one, one which I cherish with all of my heart and will for the rest of my life.
Those of us that have experienced the loss of a child regardless of their gestation or age know all too well that ‘normal’ has ceased to exist as you knew it before. And so the journey begins to find your own personal ‘new normal’ that you create to live in going forward. Finding a way to honor your baby has helped many to create that new normal and yet move on without them. The guest blog below is a story of one Mom doing just that. Michelle Murray and her father Al Spence started Forever Heart Publishing to market the book Michelle created out of a need she had to document every possible detail of Tyler’s short life and she has experienced a sense of peace knowing her book has helped many others along the way.
Guest Blog by Michelle Murray
When I found out about my son’s heart problem at my 18 week ultrasound I was devastated and when my little baby boy Tyler subsequently died at seven weeks old my whole world fell apart. The legacy of my son is a deeply touching story showing how resilience, love and wisdom of the human spirit can bring forward hope, healing, and new possibilities. This story shows how something beautiful can come out of something so tragic. After the death of my son I probed, pondered and dissected what had happened and why it had happened. It wasn’t until I went on to have three other children that I felt somewhat whole again. During this time I was able to do all the things that you get to do as a Mother. One of those things entails filling out a baby book of all your children’s firsts. However while I was filling out the baby books I was heartbroken that I did not have one for Tyler. He deserved a book of his very own. I wanted something I could have to pass on from generation to generation. It was important for me to have something tangible to remind me of Tyler.
I also had such a strong desire to do something in Tyler’s honor. That is when I decided to create and self-publish “I Will Hold You In My Heart Forever… A baby book for little angels”. My company name is Forever Heart Publishing. Tyler has stretched my capacity to love far beyond what it used to be and I realized that there are a lot of mothers out there that are going through the same thing as I was. The grief that is felt after losing a baby is by far one of the most profound griefs that can assault the human spirit.
Reading the email responses I have gotten from Mothers who have purchased a book sends waves of calm over me and has helped me reach an even deeper inner peace. It is an amazing feeling to share a connection with people from all across the world. People started telling me how much they admired my strength in coping with Tyler’s death, but this awful heavy tragedy starts to feel, at times, like a rare joy, a special gift. Tyler had touched all these lives, and made all these moments possible.
My patience with talking to other infant loss parents seems endless. Knowing we all need others willing to reach out, listen and understand, I trained to be a grief facilitator for Bereaved Families of Ontario to talk to other women who share my same fate. It has brought me great comfort in reflecting on my own pain and loss, and the larger sense of my life.
Occassionally I get teary-eyed at the sight of a little boy or whenever something around me triggers a memory but I know that Tyler has left his footprints on this world and he will live in my heart forever.