This year I wanted to share the book we have for my Rainbow Sam. We have the book “Someone Came Before You” it is the companion to “We were going to have a baby, but we had an angel instead“. It helps explain the loss of a baby before the one you are reading to. Sam doesn’t understand yet, but someday he will, and this book will help.
I can’t get my picture to upload. You can check out my FB for it if you want.
There are a lot of “what not to say” lists. And I think I’ve heard them all and then some. People don’t know what to say. I think the best advice I can give is to validate their grief. One of my favorite loss quotes is “It hurts because it matters.”
A month after Noah was born I had two friends tell me exactly the same thing, almost word for word. It still sticks out in my mind as the single best thing anyone said. They said “You are my family, so he is my family. And I am so sad that I didn’t get to meet him.” That one thing said so much. It allowed space for my grief. It said that Noah, that his life, that he as a person mattered.
At a time when so many people said nothing, never mentioned his name, never included him in a count of my children. Their grandchildren, nephews, what have you. They said he mattered. And that they were grieving with me. And isn’t that what empathy is?
Light and Dark. Grief and Joy. We grieve because we love. One picture shows one of our darkest moments and the light and joy we felt when Sam was born safely. And the other the heartache we felt, missing Noah even in our joy.
I recently read back over some things I wrote in the months after Noah was born. My grief was so dark. So raw. I said things like “How can I ever be happy again?” Of course that rawness fades. You do feel happy again. When Sam was born we were of course happy. There was light. But there was grief there too. It’s unexpected. But every happy memory you make is shadowed by the thought that they should be here. When you have a baby after loss, it shows you, in great detail exactly what you missed. What you should have had.
After loss, there is light again. You do smile, you do have happy memories. But the shadow of loss is always there. With light comes dark.
I was so afraid when I got sick. Afraid that my body would choose me over him. As I lost 4lbs a week and needed daily IV fluids, I was afraid. But we made it past 8 weeks, then 12, then 16. I started to get a little better. We were going to beat HG. My strong, healthy miracle baby.
It wasn’t until later we learned. He had a cyst in his brain that was slowly killing him. It had formed early on. Through all our fighting, we didn’t know that the end was inevitable.
Our miracle baby, beating fertility and HG. We said goodbye on 10/19/13 at 20w. Today and every day, we remember him. Honor him with our memories, our words, with love.
Two years ago I woke up 17w pregnant, anxious to see our baby again, and find out if we were having a boy or girl. A friend watched O while we went get or ultrasound. Today, I am watching her son while she, 17w pregnant, goes to the same office for her ultrasound. The sun rises again, and will hopefully set in a different story.
Two years ago today we had a beautiful ultrasound. A bright spot in my sickness, we got to see our little boy. We shared our excitement over having another boy with our friends and family. It wasn’t until the next day that we got the call that the doctor had concerns and wanted us to come back. The start of the fear, panic and grief that would cover the rest of the month, and the grief that lasts forever.
Today, someone apologized to my for not being as supportive as the wishes they could have been “when I was grieving.”
I knew what they meant, but it struck me as odd. What do you mean “when I was grieving?” I am grieving. No past tense here. And I realized, I still consider my grief fresh. New. I see myself as “newly-bereaved.”
Obviously not compared to someone for whom it has been only a few hours, days, weeks, months. But new. An open wound.
In three weeks in will have been two years. This week will be two years since the first bad news. But it still seems so raw.
Does that ever go away?
Four years ago today I laid on the couch hoping the contractions wouldn’t start again when I stood up. They did.
Two days later I was in the hospital.
The next day his heart rate dropped dangerously low. Twice. I was told that it would keep happening. I was told that next time they might not get him back. They cut him out of me and took him away. I was left alone in the recovery room, empty, without a touch of his skin or a glimpse of his face.
Two years ago I was on bed rest with daily IV fluids. I had lost nearly 30lbs. I was anxiously awaiting the ultrasound that would confirm that we would be having another boy.
Six days later it would confirm another boy and we would joyfully share that with friends and family. The ultrasound tech would tell us that she couldn’t get good pictures of his brain, but don’t worry, just come back in 3 weeks.
The next day we got the call that changed our lives. The doctor thought he saw a problem in the brain images. We should come back in one week. The beginning of the end.
This week sees the anniversary of a near loss, a birth, finding out we were haven another son, and the discovery of a fatal defect. So many hugs and lows. Everything is a jumble.
When Sam was a newborn it was easy to imagine the clock had been reset. It was easy to look at him and think that the past year had been a dream and that Noah was a tiny, healthy baby.
Now Sam is almost 5 months. He is a happy wiggly baby. I have no idea what Noah would have been like at this age. He is always a tiny baby to me, even though had he lived he would be 17 months. The same age Owen was when we moved here. He would be approaching the age Owen was during my pregnancy with Noah.
I will always wonder who he would have been.
It’s been a rough few days. Yesterday was a year and a half since Noah was stillborn. And I ran into hurt and judgment in an unexpected place.
I have walked a fine line of being open about what exactly happened, but I have been afraid to be too open. Yesterday underlined why. You never know who will share your story. And who will twist it to fit their own world view.
I was blindsided yesterday at a birthday party. A friend of the mom’s and I started chatting. As soon as she heard my name she told me that while we’ve never met, she has prayed for me. I was immediately wary. What had she heard? Who had told her, and why? It turned out I was wary for good reason. She works for the local crisis pregnancy center. Aka anti-choice organization. She invited me to their “post-abortion support group.” She told me that while the situation was different, lots of people come who regret heir choice.
I don’t. We made a decision. Noah was loved, wanted, and dying. More brain damage was occurring all the time. He could not ever breathe on his own, and his condition was getting worse, and their was no treatment available. So we induced labor. Removed him from the life support of my body.
And yet this woman, whose name I don’t even remember, has sent me into a tailspin. My nerves are frayed. Why do I care about this random woman?
I think it’s that she represents so many. I know that. I have friends who have been so supportive that I have never shared with. Because I imagine a reaction like this.
I fought to stay pregnant for months. I fought to give birth to him in the way that felt right. I fight every day for his memory. For recognition from friends and family that I have three sons, not two. I am tired of fighting. This is not a fight I am up for. This is not a fight that I feel I can win. It is too entrenched.
I wish Dr Seuss was right. But in this, there are people who mind, and they do matter. Friends, potential hiring committees, parents of future students, this is something that matters to many. It feels like a hopeless uphill battle. And I don’t have the strength for it.