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.

Sometimes, there are answers.

For a few weeks I’ve been struggling a lot with “what if?” What if I had gone to Philadelphia sooner? What if I had pushed my doctors in Florida harder? What if I had told them to put all of the tubes in Aria’s chest and head at birth? What if I had told the doctors to keep fighting?

And then my ultrasound and MRI images from the Children’s Hospital showed up on my doorstep.

As I scrolled through the images one thing became abundantly clear. Aria had no lungs. I mean, technically she did. But when Dr. K said, “She has a small sliver of healthy lung tissue.” It really was just a sliver. A tiny little line of lung tissue pancaked on the side of her chest, smothered by a massive tumor. Seeing it clear as day in those images was both jarring and oddly calming.

She didn’t have lungs. They said it to me a thousand times, but to see it with my own eyes…

You know, some things are just not in our hands, no matter how convinced we are that we’re the ones in control.

It is also not lost on me that Aria lived over an hour, surviving on an underdeveloped, sliver of lung tissue. Maybe we could come up with a bunch of scientific reasons as to why she was able to live for so long, maybe it was God breathing life into my little girl. Either way, it was a miracle.
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I’m scared of feeling relief.

I posted two days ago about picking the day we would pack up Aria’s room. I haven’t been able to stop the topic from swirling through my mind ever since.

I felt strange after setting the date. I liked the certainty in knowing when that day would come. I could prepare and brace for it, and that felt like a good thing. There was also a lot of sadness as I thought about the reality of never seeing Aria’s room again. It’s the place I run to when the sadness overwhelms me and I need to feel close to her. It is the only place on this earth that I feel totally surrounded by her, and to lose it is incredibly tough.

There is some part of me that looks forward to the day we will pack everything up. I have known for over eight months that this day was going to come. I have spent a really long time dreading this day. It’s been a huge dark cloud that looms over me every time I walk past her room, or spend a few minutes sitting in her rocking chair. I have to constantly remind myself that much like Aria, this room would not be here forever. So a part of me looks forward to no longer having to walk through life fearing this day. I want to let go of this because I have carried it on my back for so long and I just want to feel a little lighter.

But how can I want this? Seeing all the hope we had poured into her room get packed up into cardboard boxes is going to shatter my heart. How could this ever be a good thing?

I guess what I am trying to say is, I feel like letting go of her room is a lot like letting go of her. I know that is far from the truth, but it’s a tough feeling to shake. I don’t want to dishonor Aria’s memory, and I don’t want to distance myself from her. I don’t want to be happy about letting go of something so connected to my memories of her.

And yet… I have hope. I have hope that packing up and starting over in our new house will bring us a lot of joy. I have hope in the possibility of a few of Aria’s things eventually finding their way back into our home, to be used for her future siblings. I have hope that doing all of these hard things will bring us one step closer to a brighter future.

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.

Fatherhood, from the very beginning. (A wife’s perspective)

With Father’s Day rapidly approaching, I have started thinking a lot about fatherhood, especially as it pertains to bereaved fathers like my husband. A few days ago I recalled a phrase I’ve heard several times through the years.

“A woman becomes a mother when she learns she is pregnant, but a man doesn’t become a father until he holds his child for the first time.”

You know, I really hate that phrase. I’m not a father, but it even feels like a slap in the face to me. It’s so dismissive, and really belittles the incredible connection that men share with their unborn children. This is the very reason men have such a difficult time understanding their emotions while grieving the loss of a baby, whether it happens early in pregnancy or shortly after birth.

Let me tell you this, my husband became a father the moment he learned I was pregnant. His journey began when our daughter was the size of a sesame seed. I can say this with great confidence because I have walked this path alongside him every single day of our daughter’s brief life, and beyond.

When I was just five weeks pregnant with Aria, our doctors warned us that our pregnancy may not be viable. They couldn’t find a heartbeat, or any evidence of a baby inside the gestational sac. My hormone levels, and the date of my last menstrual cycle led them to believe I should have been far enough along to see much more development than that. After a week and a half of worry, Aria finally allowed us to see a glimpse of her on the ultrasound, and her rapidly beating heart.

But while we were in that limbo period, waiting to find out if I had miscarried or not, I watched my husband behave exactly as a father would. He drove home from that doctor’s appointment with tears streaming down his face. He was already in love with our child, and we had only known I was pregnant for a week. The thought of losing this baby was devastating to him. In that moment, to tell him he wasn’t actually a father would have been grossly inaccurate. He had never met our child, he didn’t know if we were expecting a boy or a girl, and he didn’t even know if this baby was going to survive – but he was a father.

He fathered our daughter throughout my entire pregnancy. He took care of me as I battled horrendous bouts of morning sickness, and fetched whatever food I could stomach at the moment without a single complaint. He enthusiastically helped me assemble her nursery furniture, and even made a shopping trip to Babies-R-Us on his own. He spoke sweetly to my belly, and loved feeling her little kicks. He prayed for her, planned for her, and hoped for her from the very beginning.

When our daughter was diagnosed with CCAM at our anatomy scan, he stood bravely beside us. He went to every single high risk appointment, which involved two hours of driving once (and sometimes twice) a week, and a lot of time away from work. I never once asked him to do that. In fact, I told him not to worry about it every. single. time. But he felt very strongly that Aria needed him, so he was going to be there. That, my friends, is what a father does.

By the time Brian held Aria in his arms for the very first time, he had already been a father for months.

And let me tell you one more thing about fatherhood, it does not end.

He did not stop being Aria’s father when she took her last breaths. He did not relinquish that bond when her heart beat for the very last time. In fact, his love for Aria has grown exponentially, and completely transformed since she left this world. He is still her father, and he still fathers her – no, not in the typical way, but in a way that is unseen to the naked eye. He is fiercely protective of her memory, and constantly searching for ways to grow her legacy.

He is Aria’s father – he has been from the moment she was conceived, and always will be.

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Brian after setting up Aria’s crib – November 10, 2015

My darling daughter, you were not defective.

To my sweet Aria girl,

I know when people talk about your CCAM, they often say you had a birth defect. Your Dad and I say it too. Sometimes, it’s so much easier to say you had a severe birth defect than it is to explain the ins and outs of congenital cystic adenomatoid malformation, hydrops, and pulmonary hypoplasia. Most people have no idea what those words mean. In fact, spellcheck has underlined most of those words in red because it doesn’t recognize them.

But to be honest with you, I don’t like the word “birth defect.” I dislike the way it implies you were defective. If you look up the word “defect” in a dictionary, it is defined as a shortcoming, imperfection, or lack. If you look up that word in a thesaurus, you’ll see synonyms like flaw, imperfection, deficiency, and weakness.

But my darling, you were nothing short of perfection. None of those words define you, not even a little bit. You were fearfully and wonderfully made. Your spirit is beautiful, and your undying presence is captivating. You stole my heart before I felt the flutter of your first kick. You commanded my love without even speaking a single word. Your brief life has impacted so many people, and your legacy continues to grow. You were powerful, my angel, and you still are.

You did not lack a single thing. It was our world that lacked the ability to handle your uniqueness. You were created for far more than we could provide. You were not born with a defect, you were born with great purpose.

All my love,
Mom

Our third wedding anniversary is almost here.

A few months ago, I wasn’t sure if we would make it to our third anniversary. As I laid in Brian’s arms while in my hospital bed, I wondered if the aftermath of our daughter’s passing was going to tear us apart. I knew this tragedy had the potential to completely destroy us. To be honest, I wouldn’t have been all that surprised if it did. Disasters of this magnitude can easily break down the strongest of relationships. Sadly, it happens all the time and I completely understand it.

So that night as I listened to the sound of my husband’s heartbeat while I laid my head on his chest, I prayed that I wouldn’t lose him. As hard as it seems to imagine a greater tragedy than losing a child, losing Aria and Brian would have been even worse. I was so afraid that my best friend would become my enemy, and our grief would cause us to forget the commitments we made on our wedding day.

Truthfully, we had no idea what we were agreeing to as we vowed to stand by each other for better or worse. We still believed in the illusion that a perfect wedding would lead to a perfect life. We never imagined we would become bereaved parents. No one ever does. But the beauty in all of this is that we never broke those vows.

Brian scooped me up into his arms when my grief brought me to my knees. He held me for hours as guttural sobs poured out from the darkest pits of my sadness. He has fed me when I wouldn’t eat, and helped me shower when I was weak. The moments when Brian needed me came as well. I ignored the fact that I had just gone through a major surgery, and immediately dropped to the floor with Brian when grief took his ability to stand. When Brian was having a difficult moment, my need to take care of him overcame my own heartache so that I could provide him with the love and support he needed. We never attempted to run from the pain, we always carried each other through it.

To be completely honest, there have been occasions when we have mistreated each other in the aftershock. We both became quick to anger because of the anguish we were feeling. Sometimes, it was much easier to snap at each other than admit to our pain. But we always did our best not to take it personally, and to understand the hurt our actions stemmed from.

The dynamic of our marriage used to revolve around a 50/50 split. We both felt that we should constantly contribute equally. That has completely changed, and now it often looks a lot like 100/0. There are many instances when I’ve been so broken that I had nothing left to give him. But Brian comes to me in those moments and gives me 100% of himself so that I can find my way out of the darkness. When Brian is struggling and completely unable to give anything to me, I step in and give him every single ounce of love I have in my body. Sometimes he’s saving me, and other times I am blessed with the honor of saving him. “For better or worse” means loving each other even when we aren’t currently receiving anything in return.

It has been five months since we lost Aria, and I can say with great certainty that this is not going to rip us apart. Somehow, we have forged an even greater bond in the midst of such a tragic loss. Our third year of marriage has been filled with the most wonderful moments, and the absolute worst that we have ever faced, but it’s a milestone with great meaning. We will celebrate this anniversary with a greater sense of accomplishment than any other year because we have overcome the impossible. We have survived. We will go into our anniversary on June 15, 2016, as a completely changed couple. We are more broken than before, but far better than who we once were.

Brian, it has been an absolute honor to be your wife and I’m so grateful that I get to share the rest of my life with you. You are my guiding light, and you have brought me through life’s most impossible moments. There are so many times when it feels as if you have reached into my chest, taken hold of my heart, and forced it to keep beating. Without you, I wouldn’t be here. I love you.