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.