This is something I wrote for the newsletter of a local support group, Parents of Puget Sound Support. They offer resources for families in the Pacific Northwest who have lost a child through miscarriage, stillbirth or in infancy. I thought I would share here too.
It was the day of my daughter’s Celebration of Life. On the inside, I was frantic. On the outside, I was focused. I wanted to make everything perfect; the flowers, the music, even the chairs were important to me. I was still in shock from just 7 days before when I held my lifeless baby. The day after that, making arrangements to cremate her body. So many things a mother or father should never, ever have to do.
I knew when the doors opened a flood of people would enter. I knew that when that happened, I would need to remain focused, almost robotic. I would continue to make sure it was all perfect for her. I would gather everything I had in me to speak about her life. I would do all of this while onlookers stared at me. My family, friends, co-workers, many people who only knew Blake through a picture. All of them would look at me differently than they used to. Life was no longer simple. I was no longer just a mom, I was a bereaved mom.
I walked up to the podium and looked out at the rows filled with people. I started to speak and then I kept speaking. I talked about my beautiful daughter, Blake. My little sunshine, who changed my world in the almost 11 months her Daddy and I got to have her. Her love of Minions, licorice and big sister, Kenley. I briefly talked about the disease, Spinal Muscular Atrophy (SMA), type 1, that took her from us.
Shortly after I was done, one of my uncles came up to me. You know what they all say: “I don’t want to say the wrong thing”, or, “I didn’t know what to say.” I know he felt this way, along with love and I could tell he also felt obligated to approach me. Shaky, he told me a story. He told me about decades ago, when his mother lost her son, his brother just toddler at the time. I already knew this story but listened as well as I could.
He caught my attention when he said, “His death ruined my mother’s life. She was never the same. Don’t let Blake’s death ruin your life.”
That was the point that solidified my life from the moment she died, moving forward: people don’t understand.
Society today doesn’t do grief very well. That’s pretty much a given. When you tell someone you lost your child at any point – miscarriage, stillbirth, 1 month, 8 months, 5 years, 15 years – it’s like you’ve put a sign on your forehead that says “run away”. They freeze up, sometimes for a while, sometimes for a moment.
Blake died just 8 months ago. I struggle every single day to get out of bed. I have, what I’m learning, is pretty severe PTSD from all that came with her diagnosis, death and the aftermath of it all. I struggle with being a parent to my living daughter and I fear what life looks like when our third child is born this coming July. The hard is even harder when I look around at people who just don’t understand. People who think I should be “better” by now, or at least very soon. People who think I should be the same. People who think my life shouldn’t be ruined by the loss of my child. People who have run away.
If you’re reading this, you are like me and I am so sorry for that. I’m sorry you know what living through unimaginable pain is like. The best advice that has been given to me so far is: Find the ones who understand in a way that is helpful to you. Find other mothers and fathers who can relate to your pain. Sadly, there are many of us out there. Know that you are doing everything right when it feels like you are doing everything wrong. You lost your child. There is nothing else in the world that hurts like that. You are forever changed and you should be.
Try to care of yourself and know that even when it feels like it, you are never, ever alone.