IT. COULD. BE. WORSE.
Whenever I hear someone start a sentence with these four little words, I cringe and start to brace myself. I know I am not alone that others have tried to comfort me or relieve my grief by pointing out how things could be worse.
“It would be worse if he had died at home.”
“It would be worse if he had died in the hospital.”
“It would be worse if you had other children to worry about.”
“It would be worse if you didn’t have other children.”
“It would be worse if you couldn’t have more children.”
“It would be worse if he was older.”
“It would be worse if he were younger.”
“It would be worse if he had been sick for a long time.”
“It would be worse if you hadn’t had a chance to say goodbye.”
“It would be worse if ……”
Why do they think these comments are helpful?
I am a firm believer that it, in fact, COULD always be worse. That does not, however, mean that the current situation isn’t bad! In fact, it’s miserable. I often wanted my emotions to simply be validated. That’s all. I didn’t need someone to point out what they thought were the positives. I knew they were there. But I still needed to be sad.
At one point, I began to feel guilty for being sad because I was being reminded on a regular basis how many things I had going for me. Yes – I’m fortunate in many ways, but I was also living a nightmare. It made me feel like I didn’t deserve to be sad.
Once we hear these comments enough, we may even start to believe them. I tried to tell them to myself to keep from crying in public or to pull myself out of a bad day. This was a coping mechanism that others had given to me, so I felt forced to use it because nothing else I did seemed to be ‘working’.
When talking to people who are grieving, our natural instinct is to make it “better”. Why? Many times, the kindest thing we can do is validate their emotions. It also validates their love for the person who is no longer here. We wouldn’t dream of taking their love away, but we often do so by trying to take their grief away.
It is not surprising that the general public doesn’t know how to handle bereaved parents. They are living a reality that our brains and hearts won’t let us even conceive until we don’t have a choice. Finding things that would make the situation worse somehow makes us think we are lessening the burden.
In a larger picture, our society doesn’t recognize pregnancy loss as a significant issue – because of the pervasive idea that IT COULD BE WORSE.
Loss is loss. Grief is grief. Pain is pain. Why do we feel the need to compare losses? We do so in an attempt to justify things we don’t have answers for. We do so to lessen our own sadness. We do so to prevent ourselves from being with another person in the most difficult steps of their journey.
We can’t take the pain away from the bereaved. But we can stand beside them and show them that their loved ones, their love, and their grief matters. This may take the form of simple or grandiose gestures. The important part is that we take the step toward their grief instead of away from it.
Don’t push my grief away because it makes you uncomfortable. Its’ purpose is to help me find an inner strength to survive. Just be there and walk beside me, silently.
Once upon a time, there was an old man who used to go to the ocean to do his writing. He had a habit of walking on the beach every morning before he began his work. Early one morning, he was walking along the shore after a big storm had passed and found the vast beach littered with starfish as far as the eye could see, stretching in both directions. Off in the distance, the old man noticed a small boy approaching. As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea. The boy came closer still and the man called out, ”Good morning! May I ask what it is that you are doing?” The young boy paused, looked up, and replied “Throwing starfish into the ocean. The tide has washed them up onto the beach and they can’t return to the sea by themselves,” the youth replied. “When the sun gets high, they will die, unless I throw them back into the water.” The old man replied, “But there must be tens of thousands of starfish on this beach. I’m afraid you won’t really be able to make much of a difference.” The boy bent down, picked up yet another starfish and threw it as far as he could into the ocean. Then he turned, smiled and said, “It made a difference to that one!”
from The Star Thrower, by Loren Eiseley (1907 – 1977)
At times it seems as though our quest to bring awareness to the tragedy of stillbirth and other forms of pregnancy and neonatal loss is much to large to conquer. Just the thought of 26,000 babies a year lost each year in the US alone, or 4 million world-wide is mind boggling. How can we possibly make a difference?
The truth is that every storm starts with a single rain drop; every marathon begins with a single step and every life begins with a single heartbeat.Each one of us has the power within us to influence change and to encourage others to do the same. Commitment carries us from the first effort to the next, and the next after that. Our efforts although they may seem small influences others to get involved as well and the momentum swells. Here are a few examples how the Power of One can make a difference…..
- Deb Haine Vijayvergiya of New Jersey and her husband lost their daughter Autumn Joy at 22 weeks to stillbirth. Determined to make a difference, she single handedly pushed for a piece of legislation in her state that will change the way things are done! She did all this by learning the ropes of legislation, talking to countless individuals and working side by side with elected officials and their staff to craft the legislation and get it passed. AND – the Autumn Joy Stillbirth Research & Dignity Act passed in the very first year it was introduced - an amazing accomplishment. Read the full story.
- Sherokee Ilse of Minnesota (and now Arizona in the winter) lost her son Brennan to a full-term stillbirth over 30 years ago. Since that time she has worked tirelessly to support families in their darkest days. The trauma of her own stillbirth when she barely saw her newborn son and left her with so very many regrets motivates her to make sure that families have every opportunity to make a lifetime of memories in a few short hours or days. She has authored numerous books or various aspects of the grief surrounding pregnancy and infant loss; she speaks to anyone and everyone on ways they can avoid those awful regrets. Her bio goes on and on but again, she is an example of how the power of one can make a difference. Visit Sherokee’s website.
- Grandma Mary buried two babies over 50 years ago to stillbirth. She heard about 11 Angels and their programs of parent to parent support for families. Although she is elderly and in a care center, she knits tiny gowns, caps and blankets that 11 Angels gives to families to be sure their precious babies can be buried in clothing that fits. That’s the Power of One!
“A single, ordinary person still can make a difference – and single, ordinary people are doing precisely that every day.”
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!