Dreams

The other day Brian was helping me in the kitchen as I prepared dinner when he looked at me with glistening eyes and said, “What would she be doing now?” He didn’t have to specify who “she” was or what exactly he was asking, I already knew.

“She’d be talking. Not a whole lot. But several words by now I’m sure.”

“Would she be walking?” He asked.

“Walking? She’d probably be running by now.”

I watched the corners of his lips turn up just slightly, like his proud smile was some kind of secret he was trying to keep inside of him.

This pride we feel is an interesting thing, and not easily understood by those who have not been where we are. To think about all the growing and thriving she could be doing right now if things had been different brings so much mixed emotion. The most apparent and obvious are the negative ones, the pain, the longing. The ones that form tears in my eyes and an ache in my heart. But there’s a pride in imagining her growing up, and the joy that would have brought.

Sometimes, for the briefest of moments I pretend it was all different. I ignore the fact that she never came home from the hospital and let myself imagine what it would be like if she were racing around the house with our dog, Lana in tow. My ears fill with the symphony of tiny footsteps and excited squeals. I close my eyes and watch her black hair bounce in the air as she plays. Oh, it feels so good to imagine how those curls have grown since the day she was born. I sit there in that joy for just a moment. And then…

The weight of the world falls back onto my shoulders, and reality floods all my senses like a rising tide, washing all my dreams away.

But that imaginary joy, it still left its mark on me. A hope for what is to come. On that day when that little girl turns around and sees me standing at the gates of heaven. One sweet day.

Until then, I will do my best to thrive here. To build something beautiful from the wreckage that became my life nearly eighteen months ago. And I’ll dream, because no amount of anguish can take that from me.

I’ll dream about life on this earth. I’ll dream about growing old with my sweet husband. I’ll dream about having more babies. I’ll dream about having a farmhouse with a bountiful garden. I’ll dream about finally living next door to my best friend. I’ll dream about holidays surrounded by family.

But most of all, I’ll dream about her until I won’t have to dream at all.

Aria’s Story: Ramen Noodles

{I have decided to start writing snippets of stories and memories from my pregnancy and Aria’s birth, to celebrate and remember our daughter’s brief life, and to document all of our memories.}

I’m not quite sure where it came from, but suddenly around 10pm at night, I felt the strongest craving for ramen.

I’m a pretty healthy eater, and this is usually very high on my “Absolutely Not” list of foods. But I was ten weeks pregnant, and I needed ramen, and I needed it right away.

The only problem? We were vacationing on a cruise ship in the middle of the Caribbean. So you can imagine my husband’s reaction to my request. At first, he laughed and said “I’ll get you some ramen as soon as we get home.”

Oh no, my sweet husband, that is not what I meant. I said there had to be ramen somewhere on this ship! It was huge, and there were tons of kitchens on board! We were going to satisfy this craving!

Brian quickly left the room on his quest for ramen. He was half annoyed, but also half amused. I honestly think he did this more for the baby than me.

So, I laid in bed in our cabin, still fighting off a horrific combination of morning sickness and seasickness, and waited for him to return.

Did he find the glorious package of top ramen that I was convinced was hiding somewhere on the ship? Nope. But he had a good story, and that helped.

Apparently, he assumed his best bet was the gift shop. Which was actually a pretty good guess since they sold a lot of candy, and a decent assortment of snacks. It was pretty similar to the food selection at a gas station, and they do tend to sell packs of ramen. He didn’t see any at first glance, so he turned to the sales associate and asked if they sold packs of Ramen or even a cup of noodles.

Unfortunately for Brian, this woman was from Russia, and had no idea what he was talking about. So Brian tried to explain in detail what a cup of noodles was, and how you make it, hoping she would understand. It didn’t work. She just stood there, totally bewildered. She was probably also wondering why this guy wanted to make some weird dried noodle, and powdered broth concoction on a ship with several dining rooms, and buffets.

She then directed him to the buffet, and suggested he tried some of their pasta. Unfortunately, that wasn’t exactly what he was looking for.

Brian went to the buffet anyways, hoping that there was a small chance they were serving something that could satisfy my craving. But it wasn’t meant to be. So he returned empty handed.

Although I was very disappointed then, it’s so funny to me now. I felt like a crazy person! All I could think about was ramen. That craving actually lasted a few weeks too! My food cravings were one of the most interesting, and entertaining parts of my pregnancy. I think they actually made us bond with Aria even more.

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.

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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.

Stay at home “mom”

After Aria was diagnosed at my 20 week ultrasound, my life quickly turned into a whirlwind of doctors appointments. We had to drive an hour away every week for level II ultrasounds with a Perinatologist, and I was seeing my OB once a week on top of that. As Aria’s condition worsened, it also became clear that we would be facing a very long journey in the NICU once she was born.

At 23 weeks pregnant, Brian and I decided it was time for me to leave my job. This made it much easier to schedule doctors appointments, and once Aria was born, I would be able spend my days watching over her in the NICU.

And then we lost her.

Here I am, nearly five months later and I don’t know what to do with myself. Making the decision to return to work is really tough. Part of me wants to continue staying home because this is the last remaining piece of the life we had planned to have with Aria. Every time I think about going back, I can’t help but feel incredibly bitter because this is not how things were supposed to be. I wasn’t planning on returning to work for several years, and doing it now feels like going back in time. Once I start working again, we are back in the exact same place we were before Aria joined our family. It almost feels as if it never happened.

There is also a small part of me that wonders if work will help me get through this. Although I’ve been filling my days with trips to the gym, baking experiments, and other random tasks, I still get bored. When I’ve run out of things to do, and find myself alone with my thoughts is when grief hits the hardest. Work could be a good distraction, but in the end I know it won’t stop the pain. Employed or not, I still have to endure the process of grief.

So right now, I’m continuing on as a stay at home “mom”. I know that eventually, I’ll go back but I’m not putting a timeline on it. When my heart feels ready, I’ll go.

A Time to Remember and Give Thanks: Our Return to CHOP

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The morning of the memorial service, Brian and I were a bit on edge. I felt uneasy and was so afraid that I would completely fall apart. Once we arrived, I struggled to hold back the tears as we walked through the hospital. There were so many memories flooding back, and so many things I thought I had forgotten. I tried so hard to block out the emotions, out of fear that I would break all over again.

Each step forward brought back a memory. Rushing to the Special Delivery Unit on Christmas Eve to receive another shot of steroids to keep Aria going. The moment we learned Aria was terminal. Walking into the operating room. The memories played in my mind, fresh as the moment they happened.

As we turned the corner to walk into the auditorium, we were greeted by the faces of every child we were here to remember. Silver frames with pictures of precious faces glowed in the soft light from candles that lined the table. As soon as my eyes fell on Aria’s picture, the flood gates burst open, and tears began steaming down my cheeks. I held onto Brian and did everything I could to hold the pieces of my broken heart together.

As we stood there, trying to collect ourselves, we saw numerous hospital staff members walking by and pausing in front of each child’s picture. They looked at each of their faces and acknowledged their existence. It was beautiful to see how much they all cared for our children. I will always cherish that moment.

The service included music that was performed by hospital staff, prayers, and readings. There was also a slide presentation where each child’s name was read, while their picture was shown on the screen. It was an honor to celebrate all twenty six children that day, and to share Aria’s life with everyone. I was so touched by the love that overflowed in that space. Each child was so loved, so missed, and so cherished.

Afterwards, we were able to meet with other families, and hear their stories. For the first time, we were among people who truly understood our loss, because they have felt it too. We were reminded again and again that we are never alone.

Just before leaving the hospital, we took a picture in front of the entrance to CHOP’s Wood Pediatric Center, where the Center for Fetal Diagnosis and Treatment, and Special Delivery Unit are located. The last time I walked through those doors, I was pregnant with Aria. As we stood there, I could barely comprehend how much everything has changed since then. I had dreamed of taking this picture while holding Aria in my arms, and proudly announcing that we were finally busting out of the NICU and going home. That was not the path that was intended for us, but we still found a way to take that picture and include Aria in it. The pink balloon is in remembrance of our baby girl, who soars above us.

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Overall, I’m really happy we made the trip. I was so anxious about it, and unsure if going back to CHOP would be a good idea. But during the ceremony, I realized that as bereaved parents, we don’t get many public opportunities to acknowledge our daughter. There won’t be first days of school, graduations, or weddings. However, attending this memorial gave us a chance to sit in the audience, hear our child’s name, see her face, and celebrate her life. I’m really thankful for that.

In addition to attending the memorial at CHOP, we got to visit the cemetery where Aria is buried. Since we are a military family, we chose to bury her in Maryland, where our families are. It was the best choice for us because we know it’s a place we’ll visit often, no matter where we live. Although it is really difficult to be so far away, our family visits often and keeps her little spot of earth full of love.

When we got to the cemetery, I was so excited to see the cherry blossom trees that surround the baby section beginning to bloom. As the wind blew, little pink and white flower petals trickled down and covered the earth below. I couldn’t help but think that really suited her. We placed flowers at her grave, and played her song. We felt like we were reunited with our daughter for a moment, and that was really wonderful.

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Past Tense

It happens at least once a day. I’ll see something cute, pink, and girly and the words almost escape my lips. 

“I bet Aria will love this.”

And just as I begin to speak, I remember, and my heart sinks. I had gotten so accustomed to talking about Aria in a certain way, always in present tense, or future tense. Everything changed so suddenly that even now, parts of my brain haven’t fully adjusted. Planning for a future with Aria had become such a defining part of me, and it feels a bit like I’m trying to break a habit. I’m not used to talking about her in past tense, and it certainly isn’t something that comes naturally. 

Do I say Aria is beautiful? Or do I say she was? My heart is very conflicted on the matter. Sometimes saying she “was” just doesn’t seem appropriate. I could never say that Aria was my daughter. She is my daughter, and always will be. But if I were to go around saying that Aria is almost three months old, and is the most adorable little girl, people would be quite confused. 

Sometimes, using past tense makes me feel like I’m denying her existence. She is very much alive in my heart, and her life continues through me. Saying that Aria “was” just doesn’t adequately express the way I feel. But such is the case for many aspects of life for parents who have outlived their children. There just aren’t words to fully explain.

When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them.

-Ronald Reagan

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.