By Alison Ferrara
*Editor’s Note: This post was originally published on Alison’s blog here.
At some point in our lives we will all encounter grief. It may be the loss of someone that affects you for a short time and then you can move forward with life just as you once had. It may be a loss that rocks you to your core and forever changes who you are. Even if you are one of the lucky few who hasn’t experienced one of the losses that you will feel deep in your soul, I can guarantee you have someone in your life who has. So, if we all will experience grief in our lives, why is it a subject that is handled so very poorly by the vast majority of us? I don’t think it is because we are bad people, or intentionally trying to hurt others. I think the reason comes down to three words: fear, ignorance, and self-interest.
As I have been navigating the first several months of my second year of being a bereaved mother, I have tried time and time again to force myself to not think about the painful things others have done to me, and think only of the support I had. Because I am one of the “lucky” loss moms. I had a TON of support when Mira died. I have seen that support fade significantly over the last year, but I have told myself, ‘Don’t complain, you have more than others.” And I have said, “people just don’t know what to do.” And I have thought, “It is natural for others to move on, it is just how the world works.” I have expressed that I would not have known how to help a friend in my position 2 years ago. But I have realized, if we never speak up about the problem, we can never fix it. I want to be part of the solution, part of the drive for awareness, part of the change, and that means being vulnerable and speaking out.
I lost my daughter 1 year, 3 months, and 23 days ago, and I still need help. I still struggle daily. I still feel the pain. I still need my friends and family to be there in a real way. Maybe that is unreasonable to ask for, because it is just not how life works. But I would love to live in a world where that IS how life works. The best way I know how to do that is look at the problem and propose a solution, and then live out my own words.
So, if the first step is to look deeply at the problem, let’s get back to those three words that lead to grief being handled poorly: fear, ignorance, and self-interest.
First off is fear. Those around us are afraid to talk about our loss. They don’t want to think about it, because the scariest truth of all, is that it could happen to them too. They could lose their child, so it is far less scary to pretend it is not happening to anyone. Those around us fear our emotions, the realness and rawness of the pain of child loss. They are afraid to say the wrong thing. They are afraid we will cry. They are afraid they will have to talk to us more about it. They are afraid of our pain. Let me tell you, it does not feel good to be feared. They are afraid we changed. They are right we did. So, they are afraid of who this new person is.
That takes us to ignorance. People around us don’t know what to say or how to handle grief, so they ignore it. Better to stay silent then say the wrong thing, they think. Wrong. Saying you don’t know what to say is so much better than saying nothing. Better to let the griever bring it up if they want to, they think. Wrong again, someone suffering struggles to reach out. People don’t know how the grieving process works, so they assume there is a time to “move on.” Especially in the case of child loss, they think the pain can be erased by doing certain things: having another baby, adopting, foster care, pretending the child never existed. Oh, how naive those thoughts are. We who have been here know nothing will erase the pain. Ignorance of grief basically comes down to, they don’t understand our pain, so they ignore it.
Lastly, self-interest plays a huge role here. I am not talking about selfishness or being egocentric. I am just talking about every day, ordinary self-interest. We naturally focus most strongly on the things that affect us the most. When your friend/family member loses their child, it is the biggest situation in their life and it will affect them forever. As a friend/family member of this person, it may be the biggest most pressing situation in your life when it happens and through to the funeral. You may think of them very often in the beginning, but then other events, even minor or mundane events, take the front row seat. You have work to get done. Child care to take care of. A house to clean. You get sick. You have responsibilities. You have birthday parties, holidays, and vacations. This is normal, this is natural. However, the mother or father that lost their child still faces their loss every day, among the work, the chores, and the celebrations. Their loss may not be the biggest thing in your life anymore, but it is the biggest thing in their life, and will likely remain the one of the biggest things in their lives forever.
There is nothing wrong with fear, ignorance, or self-interest. They are unavoidable parts of life. Absolutely no one can know what to do in every circumstance and child loss is an especially hard one to navigate. Some would say that what is best is to assume positive intent from others, just remember the fear, ignorance, and self-interest at play and accept that this is what the grief journey looks like. I wholeheartedly disagree. Change is always possible. Understanding and education are the best way to push back against fear and ignorance. And unless you are truly working with a selfish or callous person, self-interest can be combated by simply bringing needs to another’s attention.
So, how do we change our reaction to grief? I think it is a bunch of small steps. The world will not change all at once. But each one of us can change our own actions. Here are my personal suggestions for supporting the bereaved mothers or fathers in your life who are past those initial first months of grief.
- Educate yourself about the grief process, especially the unique grief of pregnancy and infant loss. This does not have to be scholarly research, just a simple google search will yield some great simple resources. There is a list of resources here in my blog (under the resources tab) if you would find them helpful.
- ASK THEM HOW THEY ARE. This one is so very important. Ask them how they are at a time and place when they can honestly answer. Express that you really want to know, you don’t just want to hear, “I’m fine.”
- Ask them about their child. Use their child’s name. They go weeks, and months, without hearing another person use their child’s name. It hurts. We want to talk about our babies.
- Include them. Ask them to go to dinner, to the movies, or just hang out at home. Grief becomes a full-time job, it is hard to do anything but get through the day. They often can’t think ahead to plan for relaxation or fun, help them out. Don’t leave them out of conversations or get togethers because they have changed, and they are sad now.
- Be sensitive when including them. As much as you should include a loss parent, you should also be considerate about what you are inviting them to. Is it an event that might be triggering (a children’s birthday party, a holiday event, a baby shower, etc.)? Then invite them personally and acknowledge that you know it may be hard to attend and make sure they understand you will be supportive if they cannot make it. Offer alternatives to include them, if possible (coming earlier or later, coming for just a short period of time, offering a room they can sneak off to if needed, staying home but video chatting for a bit during the event, get creative!)
- Never tell them to “move on,” “get over it,” or anything along those lines. Please try your best to not even think these things. We know when you are thinking them, you don’t hide it well. Do not put them down for grieving. Recognize their grief as their deep love for their child, and though they will learn to live with the pain, it will never cease. If you are truly concerned about unhealthy grief (excessive drinking, spending, drug use, self-harm, etc.), talk to them about speaking with a professional or take immediate action (call 911) if they are unsafe.
- Take part in events in the name of their child. Participate in remembrance walks or child loss awareness events with them.
- Tell them when you think of their child. A quick text saying “I saw this today and it made me think of your son/daughter” takes just a second and tells a loss parent their child is not forgotten. That simple thought can uplift their spirits for days.
- If you have done something hurtful in their grief (even if you don’t understand WHY it was hurtful, or did not mean to hurt them), reach out and apologize, no matter how long ago it was. Grief is hard. Child loss is impossible. Your mental/emotional reserves are pretty much nonexistent, meaning even accidental slights HURT. Badly. Not to mention a brain in “trauma mode” is going to struggle to process that pain even more so than others. Your apology will be validating and healing.
- Learn their triggers. Many loss parents (including myself) are also working through PTSD. Even if they do not have PTSD, they still have triggers that increase their depression, anxiety, and grief. Ask them what those triggers are so you can be there for them. They might be the “usual,” like babies, pregnant women, and hospitals, or they might be something you never thought of. And likely, there are many. You don’t need to be their therapist here and work though their triggers but being aware of them can help you to know when they will be especially sensitive.
- Just let them know you are there and you care.
- Remember you are not expected to be their only support and you do not have to have all the time and energy in the world to support them. This does not have to be a commitment of any sort. Just offer your kindness here and there as you can. If even just a few extra people in their lives do some of these things, they will have so much more support then they did before.
My husband and I have been blessed with amazing support through our journey. However, the majority of our support has faded, and like I have said, this was expected, but it still hurts anyway. I want to see a world someday where the fading of support is not “to be expected.” I want to be part of the change. Mira taught me this.
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Alison Ferrara lives with her husband, dog, and two cats in Lititz, PA. She is behavior consultant and program manager working with children diagnosed with Autism Spectrum Disorders. Alison is mother to Miriam (Mira) Jordan Ferrara who was born on December 18, 2017. Alison carried Mira to term after she was diagnosed at 18 weeks with fatal birth defects. Mira lived for 53 beautiful minutes. Alison maintains a blog to share Mira’s story and hopefully help end some of the silence surrounding infant loss (babyferraraM.blogspot.com).
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