December 23, 2015

Today’s post is a retelling of the events of this day, exactly two years ago.

We woke up the day before Christmas Eve with a game plan. Brian would come home from work early so he could accompany me to my appointment with the fetal specialist to check on Aria’s development and make sure her tumor wasn’t getting any bigger. It had already increased in size once, but everyone was fairly confident that it would stop growing and become less of an issue as Aria continued to grow in the womb. There were still concerns, but mostly there was hope.

We were planning on leaving Florida and flying to Maryland early the next morning (Christmas Eve), to spend the holiday with our families and return just before the New Year. Since Aria’s condition is researched and treated most often at the Children’s Hospital of Philadelphia (CHOP), and because we would already be on the east coast visiting family for Christmas, our team agreed it would be a good idea to set up a consult with them during our trip. So we made an appointment at CHOP on Dec. 28, 2015, perfectly squeezed in before our flight back to Florida a few days later. It would be helpful to have them be familiar with us, and Aria’s specific case if she got worse and needed more intensive care at birth. This was still mostly a precaution, as we were continuously assured that based on statistics of other babies with her condition, Aria would be just fine.

With our schedule jam packed with doctors appointment’s with Fetal specialists and my OB/GYN over the last few weeks, we had been too frazzled to pack or shop for Christmas gifts. So I spent the first half of the day scrambling to finish off my Christmas list, not an easy task with a large pregnant belly in the way. When Brian got home, and it was time to head to my appointment I still had a few things left to buy. Luckily, the hospital was across the street from the mall so planned to make a pit stop there right after.

We were the last appointment of the day before the office shut down for Christmas Eve & Christmas. You could feel the excitement in the air as the staff started to close up the office. They just had to do our ultrasound, and we could all get on with our holiday festivities.

The ultrasound started off very routine, she let us listen to Aria’s heartbeat which was nice and strong. She gave us a good side profile of her face, and she was adorable as ever. Then she scanned her belly, and I saw her write a word that I had recognized from an online support group for babies with Aria’s diagnosis, “ascites.” My heart sank, suddenly this was looking like the worst case scenario we never imagined would happen. She remained calm, and said the doctor would be in shortly to explain our images.

As she walked out of the room and the door shut behind her, I looked at Brian and said, “She has hydrops.” Always the optimist he responded, “You don’t know that, we don’t know what we are looking at. Just wait for the doctor.” Then I told him I saw her write ascites, and what that word meant – she had fluid in her belly.

Before that conversation could continue, Dr. W walked in. “So tell me what you already know about the baby’s condition.” This seemed like an odd question, but I replied with everything I had been told. He nodded, then grimaced, then tried to hide the concern on his face. I could tell he was fumbling with his words in his head. He confirmed my suspicions, Aria was showing signs of hydrops.
“Do you still have that appointment in Philadelphia?”
“Yes.”
“Good. When is it?”
“The 28th.”
He grimaced again.
“We might need you to get there sooner. We might need you to go now.”
He asked the ultrasound tech to call the Children’s Hospital of Philadelphia (CHOP), so he could speak with a fetal specialist there and get their opinion. In the meantime, he brought us into a consultation room next to the nurses station. As we were walking into the room, a nurse informed Dr. W that CHOP is an hour ahead of our time zone and their offices had already closed. She didn’t know if we would get ahold of anyone.

This is when chaos erupted around us. Every nurse was told to grab a phone and start dialing until they found someone. This was the moment I fully understood the seriousness of the situation. We didn’t have time. It couldn’t wait. We listened to the frantic clicking of the buttons on the phones in the lobby, and after fifteen minutes of this it felt like we were fighting a losing battle. Then a nurse shouted, “Dr. W, I got a cell phone number for Dr. K in Philadelphia!”

Relief washed over me. Hope returned. Now we were getting somewhere. Dr. W called Dr. K and I could hear them coming up with a plan. Brian assured me everything would be fine, we now had a very experienced doctor in Philadelphia on our side.

Dr. W finally came into the consultation room to inform us of their plan. We needed to get an injection of steroids, because in previous studies it had been shown to reverse hydrops and prevent these tumors from becoming any larger. He explained that the injections are given in two parts, and they need to be done 24 hours apart. So once we got the first one, we had to be in Philadelphia within 24 hours for the second injection. It was currently 6 PM. Our flight was scheduled to arrive in Baltimore the next day at 1pm, so we had plenty of time to drive to Philadelphia in time for the next injection. Everything was falling into place.

After receiving the first dose, we decided to grab dinner at Olive Garden. We ordered way too much food because both of us were feeling incredibly stressed and needed to eat our feelings. As we ate, I suddenly felt like I couldn’t inhale as deeply or lean all the way forward because something was in the way. Then it dawned on me, Aria’s feet had reached my ribs. I marveled at this little developmental milestone, and took it as a good sign that despite her challenges she was still growing like a weed. Our little fighter was going strong.

By the time we completed our Christmas shopping at the mall and made the hour drive back to our house, it was nearly 11 PM. We had to be up at 4 AM for our flight the next day, and neither of us had packed our suitcases. We were both ready to crawl into bed and cry ourselves to sleep, but we had to get this done. So we started to pack, and this was when I lost it.

I grabbed a few maternity shirts, and started trying to decide how many I should bring. Suddenly I realized I didn’t know how long I would be in Philadelphia. I didn’t even know if I would be coming back before Aria was born. Should I pack regular clothes too, so I would have things to wear while Aria is in the NICU? I started grabbing armfuls of clothes from our closet and tossing them into my suitcase, and once it was totally full every ounce of heartache and fear that I had been suppressing over the last five weeks bubbled over and poured out me. I struggled to see through the hot tears pouring down my face as sobs escaped my lips. This whole situation was terrifying. How could this be happening?

Brian held it together as he consoled me, then helped me finish packing. The pack and play we got for Aria had arrived in the mail that afternoon, and we quickly set it up next to our bed so she would have a place to sleep that was close to us when she finally came home. Then we finally poured ourselves into bed. As I drifted off, I thought to myself, “This day has surely been the hardest day of my entire life.”

I didn’t know then that I would be repeating that thought many times over the next few days.

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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

Entering Aria’s season for a second time.

In less than two weeks, it will be two years since I held the positive pregnancy test that changed my entire world in my hands. It’s crazy to think that at this time two years ago, Aria was already an embryo, a collection of cells multiplying at rapid speed. Already a tiny human, already so loved.

And this means we are about to enter what I often refer to as “Aria’s season.” The coming months are going to be extra hard I’m sure, just as they were last year. There are just so many memories and anniversaries. In the coming months I’ll find myself thinking, “On this day two years ago…” over and over again.

Thankfully, we still have a few months of blissful memories before the painful and crushing ones arrive; starting with November 19th (the day Aria was diagnosed with CCAM) and ending with January 2nd (the day Aria took her last breaths). But even the happy memories ache these days. The bitterness in knowing that our joyful moments of life with Aria were fleeting makes it hard to remember them as purely as they happened. I miss being able to feel that joy the most.

But I am still so grateful for that sweet little baby who was growing inside of me two years ago. She gave me so much in her twenty six weeks and three days on earth. She showed me what it truly felt like to give boundless love, and feel relentless joy. She was grace, she was hope, she was everything. This ache I carry every day is such a small price to pay for the privilege of being her mother.

I am doing my very best to enter this season with hope and purity in my heart but to be honest, it is proving to be quite a challenge. With the agony of it being so long since I held our daughter in my arms, and our current fertility struggles,
I’m feeling so overwhelmed and bitter. My heart wishes so much that everything could be different, and that Aria’s life here could have lasted longer than a season. If only, if only.

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.

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.

So, I guess this is my version of motherhood.

I get about eight hours of sleep every night, but if I wanted to sleep for ten hours there’s nothing holding me back. I have the time to make it to the gym everyday, and I don’t have to schedule it around feedings and diaper changes. When Brian and I want to go out for dinner, we just get in the car and go. Sometimes there’s the occasional delay because I can’t decide what to wear, but date nights are pretty simple.

Most of the time I manage to be pretty accepting of it all. I go through the motions, find joy in the little things, but there are always moments where everything comes to a screeching halt. It’s the second I can no longer block out the devastating realization that I gave birth almost four months ago, and my life shouldn’t be anything like this.

I want to stay up all night with a screaming baby. I want to change more diapers than I can count. I want to deal with teething, growth spurts, and colic. I don’t want my time to be my own. I want to raise my daughter. I want to hear her laugh, see her smile, and kiss her cheeks.

But a fatal birth defect took all of that away from us.

So this is my version of motherhood. It looks a lot like my life before giving birth, and yet completely different. There are more tears shed than ever before. There is more heartbreak than anyone should feel in a lifetime. It’s messy and confusing, but it’s my life.

Although the reality of it all breaks me into a million pieces, I always find a way to gather myself back together. I let myself fall apart for a moment, then I force myself to keep going. It’s the only option I have.

Step by step, one day at a time.

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.