Only One Road

Grief is terrifying. It can be so daunting. As a previous outsider to infant loss, I often wondered to myself why SO much grief was felt for SO long after a loss took place. I now hate myself for even thinking such a thought. Although, sometimes I do wish I was that naive again. It would be so much better than experiencing this level of pain.

But, you guys, grief is necessary. There is not an alternative. There is no other road. No detour. No shortcut.

Let me share my experience with my grief journey…

About a month after the traumatic loss of our daughter just over a year ago, my sister gifted me a book entitled It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand by Megan Devine. When I first began to read the book, I was a bit deterred by the dark cape that seemed to drape over me as I read it. I felt that I identified so deeply with what the author was explaining, that it actually made me feel worse; more scared and alone. I continued to read about how the author felt in her own grief experience as she went on through her grief journey. I was afraid of what I read; that I was going to experience feelings and emotions that no one could understand. I was reading that years and years after her loss, the author felt as if she remained in this state of darkness where little to no “advice” from others had helped in her healing. Why would anyone want to go down that path? I was determined to avoid those feelings; to take a detour around them. I made it a few chapters into the book before deciding it wasn’t for me and that I didn’t want to be stuck in this depressed state forever. I would feel how I feel and then distract myself so I didn’t have to worry about feeling the things that the author described.

How naive of me.

We don’t get to choose. As bereaved parents, the opportunity to choose a certain feeling or emotion on a given day is robbed from us so forcefully the day we say goodbye to our babies. We weren’t given a choice in that matter, therefore we aren’t given a choice in the way we “move forward” after that point. Our minds surely can trick us into being positive and maintaining this constant mindset of “they’re in a better place” or “they wouldn’t want me to spend all my time being sad”. But the truth of the matter is that our babies are still gone. They died. And there are no magic words, song lyrics, bible verses or images that can mask that. (By the way, I have an unfailing faith in my Lord and Savior, Jesus Christ. But just because I love Him and worship Him, doesn’t mean I don’t naturally question the things that happen). Sure, these things help provide a distraction to our pain at times, which we all need. But nothing takes it away. Nothing erases it and makes it not true.

As time went by, I began to feel myself experiencing the same things that Megan Devine described feeling after the loss of her husband. I found that no matter what I did, my mind always went back to the place that I was stuck living in. My child died. My son’s sister went to heaven and he will not grow up alongside her. My husband will not walk his daughter down the aisle at her wedding. This is real. This is horrific. This is not OK. I am not OK. And the things I was feeling could not be avoided. They only seemed to reappear even more vividly each time I went to distract myself from them.

Finally, after months of talking with my incredible grief counselor, she encouraged me to lean into these feelings. I was not overly enthused about the idea of letting myself feel this way, but as she worded it, “the only way you can start your healing journey is to go through it.” I knew she was right. I knew I had to start letting myself feel what I felt. To stop pretending that I didn’t feel those ways. Especially when they came crashing over me like tidal waves on random days, knocking me down and out for days at a time.

Once I began to tear down the wall I had built up to protect myself, I noticed a difference. I felt like I understood where Megan Devine was coming from as she explained her grief journey. I started to feel a sense of entitlement, in terms of allowing myself to feel any way on a given day. If I felt angry, I had to remind myself that I was entitled to feel that way. If I was sad, crying for half a day in bed, I had to remind myself I was entitled to feel that way. Even if it was an entire year after our loss.

One day, not all that long ago, I picked up Megan Devine’s book once more and picked up where I left off. Having this new sense of understanding my healing and grief journey made me feel more prepared for what I might come across as I continued to read. My heart and soul felt almost liberated, in a way, by what Megan was saying. Although she and I had experienced a different type of loss, her words resonated so deeply with me and I felt that I could relate so much to her advice and her theories.

My advice to those of you who are newly bereaved, no matter what type of loss you’ve experienced, is to let yourself feel how you feel. Feel angry. Feel sad. Feel overwhelmed. Lay on the couch all day. Drink that bottle of wine. Sleep those extra few hours. Send your kids to their grandparents for the day. Talk to your spouse. Call that friend who can relate to your situation. Make that counseling appointment. Turn up that song as loud as you can in the car. Say that prayer. Eat that ice cream. Go for that run. Whatever it is that YOU need to do to get through those difficult days, it’s important to remember that you are entitled to feel that way and you are entitled to do what you need to do to make it through. Some days all we do is survive. And no one is entitled to tell you differently.

My heart is with you. Always.

The Last First

“You need to tell us if you want us to stop.”

That sentence, uttered shakily by a doctor, haunts me to my core. It churns my stomach and puts a lump in my throat. Replaying it in my mind often fills my tired eyes with hot, stinging tears.

This doctor was referring to the continuous CPR that a room of 10-15 people were performing on our 12-day-old daughter as she lay in her hospital bed, fading fast from the coagulopathy that wreaked havoc on her little body after she developed a viral infection known as enterovirus. This was the 4th time in a matter of 3 days that she had gone into cardiac arrest. We knew, deep in our hearts, what this meant for her. But what parent wants to believe that? What parent initially accepts that as their reality?

When Ellie’s care team of doctors and nurses slowly emerged from Room 320 and filed out into the hallway to face us, their demeanor said it all. They didn’t have to tell us that her fight was over. We already knew.

I don’t have much memory of what happened next. Those are moments I wish I could put out of my mind completely. But I have jagged little pieces of memories that come into focus every now and again. I can’t make sense of it all or how it all flows together, but I know it’s there.

I’m usually someone who censors myself around others; I don’t want to be a burden or a bother to them. I don’t like to have attention cast on me and I avoid it at all costs. I never want to be the bothersome one. But, in the moments following the worst words I’ve ever heard, I forgot all about feeling that way. I forgot there was anyone else even in existence, let alone around us on the 3rd floor.

I screamed. I screamed as loud and as hard as I possibly could. As if the decibels of my voice could somehow have an affect on our situation. I wanted her to hear me; to hear that this wasn’t what I wanted. That I would do anything to take it all away. I wanted her to hear my screams that this wasn’t the life I wanted for her and that I was screaming to mourn what we once had. What we JUST had, mere days ago.

I lost all control of my body. I collapsed to the floor and my husband wrapped me in his arms and caught me. Our doctor wrapped us in his arms and fell to the floor right along with us. He had just watched the dreams we had for our daughter be completely wiped away like someone was erasing a chalkboard. Gone. Just like that.

I relive that all in my head every single day. Not all day every day, but it creeps into my mind at some point or another with each passing day. It’s a nightmare, a memory that cannot be escaped. It cannot be forgotten and cannot be washed away. Needless to say, that day, July 17 is one that I will always come to dread in my mind.

I’ve always heard that the anticipation of a dreaded date is worse than when it actually arrives. I thought this to be true of our daughter’s first birthday. It was much more of a celebration than I had thought, and I felt much more joy than I thought I would. We are lucky to have friends and family that wanted to make it so special for us, and for her.

The anniversary of Ellie’s death, however… that was not something I could have prepared myself for if I tried. I couldn’t prepare myself to relive that day. To recall where I was and what I was doing a year ago as each hour and minute passed by. I laid in bed in the dark that entire morning and the couch that entire afternoon. I cried and slept and cried and slept. I just felt that I was reliving the entire day, even though we were in a completely different place and time. But as these feelings made this anniversary different, it was also unlike any other anniversary that comes and goes for another reason.

It was the very last of the firsts.

From here on out, every birthday… every anniversary that arrives won’t be the first anymore. It becomes the second, third, fourth, tenth, twentieth, fiftieth. The thought of that much time going by without our baby girl… that much time going by without Emmett having his baby sister around… it breaks my heart all over again every time I think about it.

In a way, I feel that I’m grieving the last of the firsts… just as I am grieving the time survived without her. The more time goes by, the further away I feel from her. More and more time wedges itself in between the place where she existed together with us. That distance is terrifying. It’s haunting. And it just gets worse as the days, months and years go by.

I have found that I can provide temporary distractions for myself that take my attention away from this thought, but ultimately my mind always comes back to it. Because it’s now our reality and it’s something we must learn to live WITH. We cannot learn to live WITH it if we don’t understand it and we don’t feel it to the fullest. Of course, there is no right or wrong way, but the only way to continue on our grief journey is for us to go THROUGH it at some point or another. It’s never going away, and reminding ourselves of that can sometimes be the hardest pill to swallow.

No matter how much time passes by in this lifetime, our love for our children that we have lost will never stop growing. We will never stop feeling because we will never stop loving.

Where Are You?

I carry you with me everywhere I go.

From the moment the morning sun rises above the horizon to the moment the moon and stars light up the night and every second beyond that. I carry you with me. Even in my dreams.

But, I’d be lying if I said I didn’t wonder if you always carry me with you. If you can hear me, see me, feel me, remember me.

There are so many unknowns in life but the biggest one that crosses my mind these days is the wonder of what heaven is like. What it’s really like, through your eyes.

I wonder if you know how much we miss you and how much we physically hurt without you here.

I wonder if you see our bad days and tears or hear our angry thoughts and cries when our minds takes us back to the minute you were taken from us.

I wonder if you remember the moment we first met.

I wonder if you remember us telling you how much we loved you and how sorry we were that this happened to you.

I wonder if you were afraid and wondering where Daddy and I were and why we couldn’t take this away from you.

I wonder if, when you saw the face of Jesus, it brought peace and calm to your heart and soul.

I wonder if He promised you that you could always see us, hear us, feel us, remember us.

There have been days where I have prayed and prayed and prayed until I’m blue in the face for God to help you send me a sign. Some sort of symbol or feeling that lets me know and reassures me that you can see me, hear me, feel me, remember me. And I’ll be honest… I get incredibly discouraged when I receive nothing in return. Not a butterfly, not a song, not your name, not anything that represents you to me. When I pour my heart and soul out into a prayer and God doesn’t answer it, I feel so disappointed in those moments.

Today was one of those days.

I stopped to visit you at your resting place. It’s just as beautiful as ever and I always find peace when I visit you there. Even though to me, that’s not really where you are.

I sat, leaned up against your headstone and talked to you for what seemed like forever. Tears stung my eyes as I told you I couldn’t believe that it has nearly been a year since you came and went. I told you how sorry I was that this happened and how angry I felt because this isn’t how it’s supposed to be. I told you that you would be SO proud of your big brother and if you could only see how much he loves you; how much he remembers you and how he brings you along on every single one of his adventures. I told you how we will NEVER stop including you and honoring your memory and your life. I told you how that made my heart so happy.

Then, I told you I felt like I hadn’t felt your presence lately. I told you I would ask God to help you send me a sign to let me know that you could hear me, see me, feel me, remember me. Through my prayer, I asked Him to send me a butterfly, a song, your name… something that reminded me specifically of you.

I sat there, at your resting place, for what seemed like hours although it was only a few minutes. I waited for those signs. I waited for a butterfly or a bird or something to come along and let me know that God was listening and that you were too.

I started to feel that sense of disappointment come over me. I was just about to get up and leave when I turned my face to the sun. Then I realized something.

God answering my prayers doesn’t have to look like Him sending a butterfly, a song, or something with your name. He answers things and does things in His own ways, in His own time. One of my dearest friends recently wrote a pack of cards dedicated to faith and giving ourselves and others the reminder to have faith in God. On one of the cards there is the saying “His timing, not mine.” I thought of this card when I turned my face toward the sunlight.

This was my sign. This was God helping you reach out to me. This was you.

I smiled as I soaked up the warm sun and felt its rays on my face and arms. To me, it felt like we were wrapped in a beautiful embrace and it just filled my heart and soul with peace and joy.

This gave me perspective and hope. On days when I feel forgotten or ignored by God, I must remind myself to look around. His beauty and His creations are all around me and I know that you can be found in so many of those things. I must remind myself to look closer and dig deeper; that you are ALWAYS there, no matter how clear or unclear it may seem.

You are the sun, the moon, the stars, the wind, the rain, the flowers, the birds, the butterflies… you are everything that is beautiful and good in this world.

I will never feel left wondering where you are and if you hear me, see me, feel me, remember me. All I have to do is turn my face to the sun and allow myself to feel that embrace… and there you are.

Grief is just love

The following is a letter I wrote in my journal to my daughter, Eleanor in the weeks following her death.

My emotions were incredibly raw at this time. As I reflect back on my words, I’m reminded of the intense, overwhelming, almost surreal pain I was experiencing; like an exposed, open wound that recreated itself all over again each time I put my pen to paper or the words left my lips. If I didn’t say it out loud or write it down, maybe it wasn’t really real. If I didn’t physically acknowledge it, then I wouldn’t be faced with the truth of what my “new normal” looked like and that it wasn’t a crazy nightmare I was waiting to wake up from.

Writing this letter was an important step for me, regardless of my intentions to keep it private or share it. It was my first real step in going through the stages of grief. It was accepting what had happened and that this was reality for our family. I still feel so strongly about much of this letter and tears stained my cheeks as I revisited my words and deep emotions to my sweet girl.

If you are not a grieving parent, it’s important for you to understand something about the grieving parent in your life that you love and are supporting: although the pain of losing a child may become less intense over time, it NEVER goes away. I have made it further along my grief journey since this letter was written, but one thing to understand is that grief is not linear. Yes, there are “stages” of grief but there is no order that it follows.

I always think of grief like the elevator at the end of the movie “Willy Wonka and the Chocolate Factory”– how Willy Wonka explains to Charlie Bucket and Grandpa Joe that the elevator goes backwards and forwards, sideways and long ways and slant ways. There is absolutely no pattern and no rhyme or reason to the path that it takes, and this is exactly how a grieving parent feels. It’s a roller coaster. It’s a crazy elevator. It’s something with no end in sight. It never stops. Sure, grief can be “managed”, “accepted” and we learn how to live alongside it
. But it’s important to understand that no matter how much time goes by, grief never stops.

Because grief is just love
with no place to go.

My dearest Ellie Jean,

From the moment I first laid eyes on you, I knew in my heart of hearts that you were going to be special. I had no earthly idea just how special and how much of an impact you would have; not just on Daddy and I, but on SO many people, some who didn’t even get to meet you.

I will never forget your sweet sounding little cry and your little coos and grunts as you began to learn about and figure out the world around you. Your snuggles were so precious to me; I only wish I would have given you more of them… so much more.

I pray for you and talk to God about you every single day, multiple times a day. I ask Him to keep you safe and to give you all the love that He possibly can. I tell Him how much I miss you and how my heart aches with sadness that you are not here with us anymore. Although I know I should not question His will and His reasoning for things, I find myself constantly asking Him,

“Why?”

I struggle to find meaning in all of this; why we had to lose you and why so soon. I have so much faith in the good Lord that He will someday help us understand why He needed you so desperately that He had to take you away from us. But, until that day, my heart will continue to be broken. It will always be missing a big piece… a piece that you have with you always.

I struggle with acceptance.

I will never be able to braid your hair, play Barbies with you, paint your nails, read you fairy tales, check for monsters under your bed, help you pick out a wedding dress, or have late night heart-to-hearts with you, my sweet girl. I will always hold onto the hopes and dreams that we had for you; I know God will help us to fulfill those when we see you again, sweet angel.

I hope, more than anything, you were not afraid in the end. I hope that you did not feel alone. I hope you know how much Daddy and I tried to protect you and keep you safe. I hope you know how much we loved and still love you. I hope Jesus reached out his loving arms to you and carried you home to heaven when you were too weak and tired to carry on. I hope you felt Mommy, Daddy, Emmett and your whole family’s love for you in your 12 short days here with us on Earth.

I will never be who I once was. You have changed me, my sweet girl, in so many ways. I promise to live the rest of my life honoring you and making you proud. I promise to be the best mommy I can possibly be to your big brother and that we will always include you in every adventure we go on and every new path we take. You have made me a better, more thoughtful, insightful, persistent, compassionate individual and I will never be able to thank you enough for strengthening these qualities in me.

I will miss you forever. Please just always know that I carry you with me in all that I do, no matter where I go. You are a part of me and I am a part of you.

I love you to the ends of the earth and back again.

Love,

Mommy

A Balancing Act

For me, the balance between grief and joy has been one of the biggest challenges. After losing our daughter Ellie last July, I’ve found myself constantly wondering the answer to these questions:

How?

HOW in the world do I manage to move forward grieving the loss of my baby girl AND find joy in continuing to raise my son?

HOW do I grieve losing the hopes and dreams I had for one child while still continuing to celebrate the hopes and dreams achieved by another child?

What does that balance even look like? And why am I having to answer this in the first place?

As members of this unattractive club, we know too well that losing a child presents us with some of the most difficult decisions one should ever have to make in a lifetime. Many times, those decisions are made prior to losing our child; but what aren’t highlighted or recognized as often are the difficult decisions we have to make even after our child is gone. The questions we have to ask ourselves in order to continue the journey forward. (By the way, we don’t give ourselves enough credit for making these decisions that no one ever wants to make… I certainly am guilty of this. So give yourself a little grace right now if you haven’t already. You deserve it, more than anyone I can think of.)

When we think of making difficult decisions after the loss of a child, we often think of having to decide things for funeral arrangements, memorials and headstones. As difficult and heart-wrenching as these things are, I found that my most difficult decisions presented themselves after everyone came and went. After my family and friends showed up to support me and after their lives continued on while mine came to a screeching halt.

I was faced with decisions every single day.

The first one being the decision to get up out of bed after it was all over. There were so many days that every fiber of my being was physically hurting and the thought of getting out of bed pained me to my core. I wanted to stay right there in my dark bedroom and pretend like none of it had ever happened. I wanted to wake up from the nightmare I was living and see my baby girl’s bassinet by my bedside instead of rolling over and seeing the imprints on the carpet where it used to sit.

But my son… my sweet boy. He needed me. He needed me to get out of bed and be his mommy. Because that’s who I had always been to him and no situation or circumstance could change that.

So, I got out of bed for him.

As hard as it was and as much as I wanted to shut out the world, I needed my sweet boy just as much as he needed me. His hugs were healing and his sweet little voice was the glue that began to piece my heart back together, one moment at a time.

I had to remind myself that amidst the excruciating pain my husband and I were experiencing, that it was perfectly OK to feel joy at times. It was necessary to feel joy at times. I would sometimes begin to feel myself embracing joy that someone or something brought me and then feel guilty… I was supposed to be a grieving mother. Grieving mothers are certainly not happy or joyful. That, my friends, is an ugly lie.

If you take one thing away from this post, let it be this.

Despite what societal norms tell us, grief and joy were meant to coexist. There is room for BOTH of these emotions as we travel along our healing journey. It is imperative that we find, hold onto and save forever those moments of joy. It’s during our darkest hours that we find the light in these things.

For me, those moments of joy were my son’s laugh or the wonder in his eyes when he learned something new; my husband smiling at something that reminded him of our daughter, or having a meaningful conversation with a trusted friend; our loved ones continuing to say our daughter’s name and recognize her for who she was because her short life mattered.

So please, allow yourself to feel what you feel. Don’t feel guilty for feeling any certain way. Remind yourself that grief and joy are meant to coexist. Understand that it’s all an act of balance; it’s all about figuring out how to find the middle ground and embrace both grief and joy simultaneously. And it doesn’t happen overnight, so be gentle with yourself. Don’t shut out feelings that you want to feel but you don’t think society would accept it.

This is YOUR grief journey. So many of us are walking it with you, but your journey is unique to YOU and what’s inside your heart.