A sister in loss.

A few days ago, a woman came into my workplace to take care of some business with a coworker. We started to chat while she was waiting, and it was a typical conversation between strangers. You know; the weather, the news, our husbands, etc. Then she asked the question I was dreading from the moment our conversation began:

“Do you have kids?”

I panicked. This question is by far the hardest thing I am asked on a daily basis. I never know what to say, or how to say it. But on the other hand I’m grateful they ask because I do want to talk about my daughter. I just despise the way people often respond.

“I have a daughter, but she passed away about a year and a half ago.” I said shakily.

And then I stared at the floor and quickly cracked a joke about how I also have a dog, who I treat like she is my second child. Which is how I always follow up my answer to the “kid’s question”, because people are often quite visibly relieved when I change the subject. For the general public, talking about how my daughter died is just too uncomfortable for them to navigate.

But when I looked up, she stared at me with tears in her eyes, grabbed onto my hand and said, “I am so sorry. I lost my son right after he turned eighteen years old. I know your pain, and I’m sorry.”

I stood there for a moment, shell shocked. She caught me completely off guard. I had become so accustomed to people clamming up and quickly changing the subject when I explain that I am a bereaved mother. But this woman wouldn’t let me switch topics and gloss over my loss. Instead, she chose to open her heart and sit in this messy, emotional moment with me. Just like that, this woman who was a total stranger a few seconds ago had turned into a sister in grief.

“How old was she?” She asked.

“Only an hour old. She was very sick at birth.”

She blew a kiss towards heaven and said, “Oh, sweet baby girl” and put her hands over her heart. I could see the sincerity all over her face.

“How long has it been since your son passed away?” I asked.

“Eleven years. He died two weeks before he was supposed to graduate from high school.”

I told her I was very sorry, and we stood there for a few moments with our red and misty eyes locked onto each other. We then nodded in unison, and continued to go about our business.

The moment was brief, but I can’t tell you how much that conversation meant to me. The impact changed my entire day. I suddenly felt like I was no longer at work, but in a community where I belonged. A place where I was understood. For the first time in what feels like forever, someone was seeing me for me, and not the brave face I plaster on each morning. She saw the tears I was trying to blink away. She heard the subtle shake in my voice when I told her that my daughter had died. And she felt that same searing pain in her heart when she heard that I too had lost a child. It was beautiful and heartbreaking all at once, which is really the best way I know how to describe bereaved motherhood.

Even as I rocked on my knees, howling. I detected soft breathing behind the roaring. I leaned in, listened. It was the murmuring of ten million mothers, backward and forward, in time and right now, who had also lost children. They were lifting me, holding me. They had woven a net of their broken hearts, and they were keeping me safe there. I realized that one day I would take my rightful place as a link in this web, and I would hold my sister mothers when their children died. For now my only task was to grieve and be cradled in their love. – Mirabai Starr

Saying goodbye to his little girl: A father’s love in pictures

This coming Father’s Day is the first for my husband, Brian. With all of my heart, I wish it were drastically different for him, and that our daughter was here to celebrate with us. I wish she could finger paint a Father’s Day card, and help me make him pancakes for breakfast. I wish he could walk along the beach holding hands with the little girl who made him a Dad. As much as my heart aches, I want to celebrate my husband this Father’s Day. I want to honor the beautiful connection he shares with our daughter. I want the world to know that death does not negate his role as a father.

I took a photo of Brian kissing my belly just before our daughter’s birth, and a few photos of him with our little girl shortly after. Aria Noelle Rose was with us for a little over an hour, then quietly passed in my arms. I took these images as Brian said goodbye, not because I wanted to remember the pain, but because the love in his eyes was incredible. He cared for our little girl with every ounce of his soul. For me, the emotion in those images are the very definition of fatherly love.

He has granted me permission to share these images with all of you. They are very personal, and raw. I ask that you view them with the utmost respect for his vulnerability in these moments.

RITAB4RITAB1RITAB2RITAB3

 

Our hope in sharing these images is that they help break down the stereotype that men do not grieve as much as women. We want to send the message that there is no shame in grieving, breaking down, and crying.

If you know a bereaved father, please reach out to them this Father’s Day. Let them know you are thinking of them, and their child has not been forgotten. Our society too often neglects bereaved fathers. Many men walk a very difficult path after loss, because they don’t feel they are allowed to be as open with their feelings. There are also far less opportunities for grief support for men than women. If there is one thing Brian and I want you to take away from this post, it is that fathers grieve too.

To every bereaved father, It is our hope that you are able to find a way to celebrate on Father’s Day – no matter how small. You are an incredible Dad, and you deserve recognition.

How do you stop your baby from developing a congenital defect? You don’t. 

The day we learned that Aria had a congenital defect in her lung, I drank a soda and ate a big ol’ bag of Cheetos. This might seem insignificant to a lot of people but for me it was huge.

Like most mothers, I was obsessed with trying to do the very best for my baby during my pregnancy. I immediately switched to an all natural, aluminum free deodorant. I started using fluoride free toothpaste. I made sure I was using chemical free cleaning products. I refused to take the anti nausea meds because of the risk of birth defects. I didn’t take any medications except Tums and my prenatal vitamins. I avoided foods that contained MSG. I religiously heated all cold cuts before eating them. I was so scared of mercury that I cut out all seafood. I’m a little embarrassed to say I even avoided standing next to a microwave while it was in use. I think you get the point by now. If someone said it could pose any risk to my child, no matter how small, I wasn’t doing it. I thought by avoiding all the “bad” things I could override nature and prevent all birth defects, boost brain function, and avoid any negative outcomes. 

I was wrong. 

My daughter was diagnosed with Congential Cystic Adenomatoid Malformation at my 20 week ultrasound. I was totally gutted by the diagnosis. I thought I had done everything right. How could this possibly have happened? What did I do wrong? But this wasn’t my choice to make. She was going to develop this defect no matter what I did. Most congenital defects aren’t anyone’s fault, they are flukes. It just happens. 

This is even true in cases of Spina Bifida. There are multitudes of mothers who blame themselves because they believe folic acid deficiency caused the neural tube defect. Despite everything the media tells us, it isn’t. Folic acid deficiency only accounts for about 60% of the cases and the rest just happen. You could literally take 4x the reccomended dose of folic acid and still have a baby with spina bifida.

I know it’s important to eat well and live a healthy lifestyle, especially during pregnancy. Yes, you should absolutely listen to your doctor and make some lifestyle changes, along with cutting out alcohol, cigarettes, and certain medications. I don’t disagree with that, but I also wanted to share a bit of reality. Everyone tells you to take your little miracle prenatal vitamin filled with lots of folic acid and you’ll be just fine! But that is simply untrue. 

I’m not saying any of this to scare expectant mothers, but I think it’s an important message. I’m involved in a few support groups for mothers experiencing the diagnosis of a birth defect and I can’t tell you how many times I’ve seen women ask “what did I do?” It’s frustrating and saddens me that these mothers, who are already enduring so much, are bearing this guilt on their shoulders. 

It is not your fault. You are not a cautionary tale. You are a good mother.

After a lot of research and several doctors telling me I wasn’t to blame, I finally took off the burden of guilt and shame over Aria’s diagnosis. It was incredibly freeing. I still have scars and bruises from bearing that weight, but I’m healing. If you have stumbled upon this blog and are currently experiencing the diagnosis of congenital defect, this message is for you. Please put down that guilt. It’s not your burden to bear.