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.  

 

Can we talk about God real quick?

People often turn their backs on faith in times of despair. It’s natural. We tend to ask “If God is real, and says he loves us, why did he do this to me?” I have asked that question more times than I can count, and I will probably ask it again in the future. No one is immune to doubt. We all feel it at some point, and it’s part of being a Christian. God gives us free will, you can choose to believe just as much as you can choose not to. God is not a puppeteer. 

When we learned that our daughter’s chance of survival was incredibly slim when I was almost seven months pregnant, I felt so abandoned by God. How could he do this to me? How could he do this to my baby? She’s so innocent, she did nothing wrong! I cried out to God asking why he was punishing her. I was enraged. 

Then my husband, Brian asked me to pray with him. Excuse me? You want me to pray to the very God who is going to let my child die? I wanted to refuse but I saw the hope in Brian’s eyes and couldn’t say no. So we prayed. 

And my heart softened. 

Then Brian asked if we could meet with the chaplain at the Children’s Hospital. I dragged my feet, and made plenty of excuses. When we found out the chaplain wasn’t available right away, I told Brian it was probably best if we just went back to our hotel. But he pushed, he wanted to wait for her. Once again, that hope in his eyes was enough to shut me up. So we met with the chaplain. We talked about God, we talked about faith, and we prayed.

And my heart remembered the promises of the God I once loved. 

The bible says God is near the broken hearted. He grieves with us and feels our pain. He doesn’t want us to suffer, but that is the cost of living in an imperfect world that has been torn apart by sin. He has not abandoned us, and our faith will be redeemed.

At the biggest and most heartbreaking moment of our lives, we chose to have faith. We chose to trust in the Lord’s plan for our lives. So Brian and I began to pray, hard. We forced ourselves to sit in silence and wait for God to show us the way. We even stopped praying for him to save our daughter because we didn’t know if that was his will. We prayed that God would lead us down the path that we were meant to explore. If he was going to save her, we asked him to bring us through it. If God was going to send us into the valley and call our daughter home, we asked Him to be our guiding light. We continuously prayed for His will, and the Lord provided. 

I’m sure a few of you are wondering how I can say our prayers were answered when our daughter did not survive. That is because we didn’t pray for our own will. Every single ounce of my being wishes that my baby was still here. I will miss her for every moment of the rest of my life. Losing her ripped a massive hole in me, and I’m not sure that hole can ever be fully repaired. We wanted to be able to keep her and watch her grow. But the reality is that having her here is not the life God intended for her. She was just passing through this world, blessing our lives for a little while before making her grand entrance into heaven. God showed us that, and we have felt His healing presence throughout our grief. We asked Him to guide us, and He has. 

There is a song called “Blessings” by Laura Story and in it she sings:

What if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You’re near

What if trials of this life are Your mercies in disguise

This song resonates with me because it relates to our experience in multiple ways. Our daughter’s health problems were incredibly serious and complex. Even in the womb, the safest place for her, her little body was fighting. One doctor told us that if she did survive, we needed to be prepared to see her suffer. That was incredibly heartbreaking to hear but she was being honest and I’m thankful for that. God calling our daughter home prevented her from ever feeling pain. In her short but meaningful life, she knew only love. That is God’s mercy working in her life. He did save her, just not in the way we truly wanted Him to.

So I ask of you, if you find yourself at a crossroad in life, choose faith. God will not let you down, no matter how dire the situation may seem. Even the world’s biggest tragedies can bring hope. 

You can read our daughter, Aria’s full story here.