Navigating Grief: First Days, First Year

A Message of Compassion and Strength for Families Navigating Grief

Life after loss of your baby feels like you are a shell of yourself watching life move by without understanding how to move with it. You may go through every stage of grief rapidly and repetitively with no concrete "resolution," honestly, because there isn't one. On the other hand, you may hold on to one stage of grief for a long period, kind of as if you are frozen in the form, you instinctively held onto the moment you lost your baby. I remember thinking, “How is this happening?”. Why is this happening? Why was my baby given so many battles? Why couldn't I take on the battles? As I began to ask myself these questions, I built layers of scaffolds on how I would build my new life, the new me.

If you are a parent of infant loss, you know that the old you will never truly exist again. Not really. You have changed. You lived through the worst day of your life and now you are trying to survive. Everyone handles these "early" days differently. What kept me going was the fact that my baby, Charlie, would never want me to stop living. This was not something that was a revelation that occurred quickly. It took many conversations between my heart and my mind to let it sink in.

What did help me in the "early" days was to plan things for my family and I to do for Charlie. I still remember sitting in the hospital room and telling my husband that I wanted to get Charlie's handprint and footprint tattooed on me and I asked him if he would too. For Tom and I, this made us feel like we could still do things for and with our Charlie. About a year later we got those very tattoos. His little footprint is on each of our feet, so he walks with us wherever we go, and his handprint is over my heart. I am by no means saying everyone must go out and get tattoos, but for Tom and me, this process helped us feel like he would always be with us. Find your own way or technique of achieving the same feeling. It will not erase the pain but helps you carry it along your journey, especially in the "early" days.

The "early" days of loss can feel like a blur. You try to imprint certain memories in your brain all while your heart is fighting what feels like an impossible battle. Know that the unbearable pressure of loss will subside and will be easier to carry. There are resources and a community that is always there for you. Charlie Polizzi’s Warrior of the Angels is here to walk alongside you and offer guidance and strength along the way.

The purpose of this blog is to provide guidance on how to carry grief during the "early" days.

The First Week

The first week after loss may be a whirlwind of emotion and pain that no person is

designed to withstand and somehow we do. There will be many people, family, medical and friends that will want to help you in some way or another. It is important to set boundaries without creating too many barriers. Some people do not know how to handle grief and all the emotions and behaviors that come along with it. You need to grieve in a healthy manner but don't let people give you their expected timelines for "moving on" or diminish your loss by comparing it to a loss of a pet or parent. While those losses are difficult, no one should bury their own child. Our hearts and bodies are not designed to do that.

The first week is not going to be a typical timeframe for you to build the scaffolding around the new you. No one will or should ever expect that from you. Going to the grocery store may be too large of an adventure during this time, and that is fine. Nowadays there are resources that deliver groceries and meals for you. This does bring up the fact that many parents during this time will lack the drive for self-care, let alone a basic standard of care for themselves, including food and showering. Know that this is normal but please make sure to provide a minimum of essential care.

Most hospitals will have programs to help support parents of infant loss through social workers and other local non-profits support. Charlie Polizzi's Warrior of the Angels donates journal packages to parents of infant loss that include a custom journal, pen, local restaurant gift cards and an informational postcard. We know that the first week may not be the time frame when you are ready to utilize them but want to reinforce the gesture that you are not alone. Our founders know how important it is to have someone who truly understands what you are going through providing you with resources to help in your journey.

The Funeral Services

The funeral services are our way of humans to say our goodbyes to our loved ones, but when you couldn't say an appropriate hello, or the hello was extremely brief, the goodbye just hurts more. Allow yourself the goodbye you "want." If you want to speak at the services, do it. If you want to create a photo slideshow to music, do it. If you want to cremate or bury your child, do it. Whatever you want to do to memorialize your baby do it. You do not want to regret what you should of, could have done.

People may tell you not to do certain things because they are hard, but nothing about this time in your life is easy. Do what you feel is right. People may have concerns about your well-being, but all you are thinking about is your baby. You know what your body can handle. I, Kristin Polizzi, wanted to speak at my Charlie's funeral services and friends and family did not want me to stand to speak. I insisted and did it anyway. It may have taken three men to help me to remain standing, due to my own medical issues, but I stood up and I spoke. No one was going to stop me from doing so.

You may have a whirlwind of emotions and thoughts in your mind right now but stand your ground for these moments. This includes accepting help when you need it. It may feel wrong, but you might not carry the bandwidth to handle certain responsibilities at this time. Provide your support network with your wishes and ask that they honor them in all the planning. Be in the present moment and accept where you are at in your grief. Grief is not linear and during this time you may feel like you are lost in a maze of grief. That is normal and know that eventually that maze will widen and become more linear, and easier to handle.

The First Outing

Eventually you will feel the urge to go out in public again. This does not mean "you are moving on." This means you are human and want to do things that seemed to be natural before the loss of your baby. You may become overstimulated when you do go out. You may see families with young children and babies. Grocery stores are a normal part of adult life, but when you just lost your baby and you walk in and see a new Mom with her baby you may just completely lose it. I remember doing just that, standing between isles, bawling my eyes out and almost collapsing on the floor. Some people stopped; others just looked and did not know what to do or say.

Know that going back to "normal" is not something I say lightly. Normal is a relative term and it will take time to find ways to carry the weight of your new world. Grief is such a unique process that truly is never the same for anyone. Everyone travels through grief differently. Last month, we discussed a variety of resources to help you get through the "early" days, when everything seems so heavy. Therapists, hotlines, self-care appointments (such as a spa day, once approved by your doctors), journaling and other resources are just some resources that could be available to you. Know that these resources are not one size fits all, everyone must find their own combination of resources that help them. There is no definitive answer to grief and loss. If there was it would not be as complicated and difficult to travel through. You will know when you are ready to do something that may have seemed impossible in the past. That does not mean it will be easy, but each step forward helps to build the new you.

All the Significant First's

Throughout the first year following loss there are many milestones and anniversaries that may shove you back deeper into grief. There may be a wave of emotions that make you or people around you think you are going backwards in your grief journey. Try to find ways to honor your baby on these days. Maybe include them in a family activity. If you are creative, you can create a piece of artwork, write something in memory of your child, make an ornament. Maybe you would rather take a walk with friends or release paper lanterns or balloons (there are more environmentally friendly options for both). You can choose something you want to do every year for certain anniversaries (Kristin & Tom Polizzi donate cookies/pastries to families in the NICU on Charlie's Birthdays). You many just want to stay home and be present in where you are at in your grief journey. No matter what works for you, know that you are doing what is best for you.

If you become too consumed by your grief, please do not hesitate to get the help you need. The loss of a baby is life altering, but you can find the new you. Your baby wants you to be happy. You are their Mommy and Daddy no matter the distance between you. I remember hearing all these things and just trying to figure out how and why. It is okay to question. It is okay to let your mind wander. It is even okay to be mad and angry but know that holding onto those emotions are likely to hurt you more than help you in this journey. No one should expect you to be okay during these days, but it is all right if you do feel okay.

Everyone carries these days differently. Even a husband and wife will see a dramatic difference in their grief journey and that is fine. Somethings that may be helpful to you are including your baby in conversations. If people do not mention your baby, it may seem like they have forgotten them or are tired of hearing or speaking about them. That is likely not the case. People do not know what to say and many times, even when trying to be supportive, say things that do the very opposite. They may lack the understanding of your grief, and honestly, I wouldn't wish this pain on my worst enemy. Try your best to let these misguided unsupportive and negative comments roll over your shoulders when possible. This is difficult but you do not need more reason to be critical of yourself. You are here reading this because you are an amazing parent who is just trying to take care of yourself and make sense of your new world.

Prioritizing Resources

I know it may be difficult but be gentle with your heart. You will most likely receive a lot of resources, that will very likely be added to a pile somewhere in your home. Don't be afraid to go through them at your own pace. Needing assistance to get through the loss of your baby is normal. You may fight it. You may accept with open arms. You may be hesitant. All of these things are normal.

When you are in the hospital there may seem to be too many people asking questions and trying to get you to answer things like "How do you feel?" These people are just trying to help you but, in that moment, you may not even understand or want to explain how you feel. Let's be serious, you most likely have no idea how to explain how you are feeling and do not want to describe it to a stranger that, many times have not experienced such loss. Some people may seem like they are treating you out of a textbook, while others are more personable and compassionate. Many times, the textbook personnel are just less experienced, and you may not have the bandwidth to listen to their generic comments. You are not a case study. It is okay to speak out about what and who are most supportive to you at this time. Share your preferences on the resources that are most beneficial to you. You have enough to carry and do not need another reason to increase your anxiety at this time.

Most hospitals are quite adaptable to your needs and will adjust their treatment plans along with your assigned personnel based on your requests and needs. Don't be afraid to advocate for yourself. I struggled with this until a nurse came in a talked with me while I was still in the hospital after losing Charlie. She spoke to me about her loss and that if I ever needed to talk, she had a better grasp on where my mind was at that time, as she too lived through it. She told me to stand up for myself when someone or something was not a good match for me in my journey, be it a therapist or medical personnel. I don't think she will ever know how much that conversation meant to me.

There is no global technique to map out how to navigate grief. If there was it would not be such a complex process to travel through. In our December blog post we provided multiple links to resources. Please refer to this post if you are looking for reputable resources for support.

Emotional Support and Community Resources

The journey through loss and grief is never easy, but no one should walk it alone. 

Charlie Polizzi's Warrior of the Angels Foundation is dedicated to raising awareness, supporting families, and funding research. At Charlie Polizzi's Warrior of the Angels, families can find resources, education, and a community that understands the heartbreak and the hope of CDH. 

Additional Trusted Resources: 

• Children’s Hospital of Philadelphia – CDH Program 

• Johns Hopkins All Children’s Hospital – CDH Program 

• Fore Hadley Foundation – CDH Support and Research 

Frequently Asked Questions About Grief and Loss during the "Early" days

How do I know what resources are right for me?

As in most things with grief, this is not a one size fits all response. The best answer I can give is to advocate for yourself and to listen to your heart, while also consulting your brain. I know you may be looking for a definitive response to how to make carrying your grief more manageable but there isn't one. You will find your path to the new you, but your heart needs to catch up with your brain.

The swarm of relatives and friends have left. How do I ask them for support when I don't know what I need?

The time immediately following the services where family and friends leave and you are left with an unwanted silent house your mind may wander or go into a deep depth of sorrow and grief. You may start to overload yourself with tasks to keep from crashing but know the weight typically does not disappear and you may experience a crash. You cannot hide from loss and grief but instead need to find a way to process it in a healthy manner. I know it may be hard to ask for help, and you may not know how and what to ask for but those that truly love and care for you should be able and willing to just be with you in the mindset you are in, as long as you are not going to commit self-harm.

You might just want somebody to sit with you so you can feel the presence of someone else next to you. You may want to vent and scream at the world. You may want a shoulder to cry on. Just know that people do not always know what you need and may be more willing to provide support based on their personality and beliefs rather than what you may need at the time. Most people will adapt to your needs if you can muster the strength to explain what you need from them. You lived through the worst day of your life, now you need to find a way to process this new reality in a healthy manner. You are stronger than you believe and braver than you could ever imagine.

A Final Note 

Navigating through loss and grief during the "early" days is a complex process that there is no roadmap to follow. Your heart and brain are in constant conflict, and the world continues to move around you while you try to understand where you now belong in it. My best advice would be to stand up for your heart while your brain is attempting to understand your new reality. Your heart and brain are trying to process so much that it is like a game of tug-o-war between them. Think of it as the heart and brain carrying each other through the journey of grief. The heart and brain will find a way to carry you until you find the new you. Until then, stay strong and know that you are worth this fight and you will get through this journey no matter how many setbacks you encounter.

Though this journey may feel isolating, families are never alone. With the right balance of resources and support, like many of resources provided by Charlie Polizzi's Warrior of the Angels, parents can face their loss and grief journey with strength, knowledge, and hope.

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