Being Fearless

On the day Aria left this world, and my heart split in two, I began to live in a constant state of fear.

I was afraid of life without my daughter. I was afraid of embracing reality. I was afraid of telling people she died. I was afraid of loving myself. Above all, I was afraid of feeling joy.

How could I be happy? My sweet little girl was gone. I told myself I would never recover, and frankly I didn’t really want to. I believed Aria’s memory lived in the darkness of my sorrow. If I dared to be happy, it felt like departing from her legacy.

And how could I love myself again? I still blamed myself. A part of me believed it was all my fault and I had failed her. Several doctors, my husband, and my family would look me in the eyes and tell me this wasn’t my doing, but it was no use. I really thought that as her mom, I should have been able to save her. Honestly, I still do from time to time.

Then someone asked me to look at my life through my daughter’s eyes. I was asked if I really thought Aria wanted me to live like this. Does she want me to fear love and joy? Does she want me to keep blaming myself? I couldn’t answer the question. I was caught in the foggiest part of grief and couldn’t see beyond it. Then, I was asked if I would want to watch my own mother waste away, and succumb to the sadness. I responded with an instant “no” and that gave me a lot of clarity. It was then that I realized Aria doesn’t want me to suffer.

She may not be here with my physically, but I believe she watches over me. Even in death, I’m still her role model. I have to live in the way I would have wanted her to live. I have to show her it’s possible to do the impossible, and that life is still good. I have to be fearless. Just as I would have told her it was ok to go down the slide all by herself at the park, I have to show her it’s ok to be brave after the world’s biggest tragedies.

It was never my responsibility to fix her, I couldn’t. I didn’t have that power. However, it is my responsibility as her mother to love and honor her. I can’t get very far in growing her legacy if I spend my life laying on the bathroom floor, completely drenched in tears.

So here’s to fearlessness and bravery. Joy is a muscle I’m slowly learning how to flex. The tumor that was in Aria’s lung won’t take my life too. I won’t let it.

Chocolate Cheesecake

One of the last desserts I ate while I was pregnant with Aria, was a slice of chocolate cheesecake from the Cheesecake Factory.

Brian and I were completely exhausted that day. We were just told that our daughter’s condition had become so severe that it was very likely she was going to lose her battle. We had spent the last two days in the hospital, undergoing countless tests, meeting with multiple doctors, and we cried the entire time. We needed to get out and have a brief change of scenery. So we went to the Cheesecake Factory, hoping it would lighten our spirits.

We spent the entire meal sitting across from each other in tears. There were people seated at the tables next to us who had a clear view of our sorrow but it didn’t matter. We couldn’t hold it in, we had to let the tears flow.

At the end of the meal, we ordered a slice of chocolate cheesecake. I am a bit of a chocoholic, and as miserable and sad as I was, I couldn’t help but be excited by the dessert in front of me. I savored it, allowed myself to really enjoy it. I knew all of the sugar was going to make Aria very active in the next hour. I loved indulging in sugary things when I was pregnant for that very reason. I loved feeling every single kick, punch and roll.

As the waitress brought our check, she noticed my belly, and with a smile she said “Good luck with the baby bump!” My heart sank, and I burst into tears as she walked away.

Looking back, it seems like such a sad outing. We were exhausted, heart broken, and under intense amounts of stress. But there’s something about that slice of cheesecake. Through all the pain, I found a way to enjoy something.

Now, I often think to myself “Go ahead, eat the cheesecake.” It’s a reminder that even in my darkest moments, it’s ok to find joy. I’m allowed to smile through the tears, and it’s ok to keep on living.

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“Baby girl, please come home.”

It’s so strange how random objects can suddenly bring back a memory. As I stood in Aria’s room, looking at her ultrasound, the moment began to play in my head.

We had just learned that Aria’s condition had gotten much worse, and we needed to transfer to the Children’s Hospital of Philadelphia immediately. I knew we would be out of state, and staying with Aria in the NICU for a while after her birth. I wanted to be prepared when we finally returned home, so I ran to Target to purchase a few baby essentials.

In the deepest pit in my stomach I couldn’t help but fear the worst – that Aria was never coming home. But I refused to accept it. I thought if we were really prepared, and had everything she needed, she just had to come home. So I grabbed a few bottles of Burt’s Bees baby wash, lotion and powder. Then I walked over to the diaper section, and tears filled my eyes as I realized I had no idea which size in diapers Aria would be wearing by the time she was able to leave the hospital. I decided to be extremely optimistic and grabbed a small pack of newborn diapers, even though I knew how unlikely of a scenario that would be.

As I stood at the checkout counter and paid for my items, I’m sure that everyone else thought it looked like a regular transaction. But at the core it was a desperate prayer. I was begging for an outcome that allowed our daughter to survive.

I remember the words racing through my mind as I walked out of the store, “Baby girl, please come home.”

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Aria means air.

Our daughter’s name was Aria.

I’ll admit that my husband first heard the name from a tv show and fell in love with it shortly thereafter. I was slower to warm, thinking it was much too trendy and wanted to go with something more common and classic. My husband was so in love with the name that despite my indecision, it was officially hers within seconds of learning her gender.

Not long after our daughter’s CCAM diagnosis, we learned that Aria is the Italian word for air. It’s so strange that her name was a word for something her body couldn’t process independently. Her official cause of death was respiratory failure. Her damaged and immature little lungs just couldn’t process the air her body so desperately needed.

For a while, her name was such a cruel reminder of the battle we had lost. It was maddening at times. Why couldn’t her lungs just keep going? Why did she need oxygen to survive? But now it’s a reminder that her life was exactly as The Lord had written, long before we realized she wasn’t going to be able to stay. We had no way of knowing, yet somehow it all seemed to come together, and every piece of her story fit perfectly.

After Aria left this world and entered heaven, her name quickly found another meaning. One thing we have never questioned is that even after death, our daughter’s presence is still here. It surrounds us completely, and although we cannot see her, we still feel her warm embrace. She is just like the air, felt but not seen. She is so sweetly entwined with the air that gives me life. Every breath I take is infused with her love. Aria’s air will sustain me for the rest of my life.

Aria means air.

Aria is in the air.

Not seen, but always felt.

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.

Dust.

I walked into Aria’s nursery the other day and ran my fingers along her crib. As I lifted my hand, I was mortified to find dust covering my fingertips. It was just so symbolic and physical evidence that a tiny life doesn’t occupy this space. Her room is so still that dust gathers there.

My first instinct told me to grab a wash cloth and start cleaning but I quickly realized that was futile. Even after all the cleaning, her room would remain equally empty and the dust would gather yet again. Was I going to come in every week with a feather duster? Who was I even cleaning it for?

So I grabbed a few sheets and towels we don’t use and draped them over the furniture, car seats, and stroller. I didn’t want everything to collect layer upon layer of dust but this prevented me from needing to clean up regularly.

And as I stood back and saw everything covered in mismatched towels and bed sheets, I immediately wanted to take it all down. It didn’t look like Aria’s room anymore.

I just stood there and thought, now what?

It seems like I’m asking myself that question several times a day, but I’ve yet to find the right answer.

Soon, we will be moving to a different house and then we’ll have to take it all apart and put her room into boxes. These are are the last few months we will be able to see her nursery. It would be pointless to put the crib together at our new house, because the reality is that Aria will never need it. It’s heartbreaking but it’s the honest truth.

So, maybe I’ll uncover everything and put it back to the way it was. I’ll clean it occasionally, not for Aria but for us, because once her room is packed up into boxes it isn’t coming back. I suppose we ought to cherish it while it’s here.

1+1=3

As Brian and I walk into a restaurant, the hostess usually asks “Just two?” and I cringe. As hard as the words are, I manage to agree, “yes, just two.” But it feels like a big, fat lie.

For Brian and I are never just two. No matter where we go in life, our daughter is here. She is present in our hearts for every second of every day. To most of the world, we are just two people walking into a restaurant for dinner, but we know we are so much more than that. We are a family of three.

In the last three months, I have realized that our family’s structure just wasn’t made for this world. I hate filling out medical forms and legal documents for this very reason. There’s always that one, awful question; “How many children?” And though my heart longs to tell the whole truth and include Aria, I know what they are really asking. The IRS doesn’t even count her as a person because she wasn’t in our household for more than six months. So with great apprehension, I write “Zero.” And it feels like I’ve just written my daughter out of my life.

I think a lot of people tend to see us that way too. They see Brian, they see me, but they don’t see Aria, so she doesn’t count. It often feels as if a lot of people don’t fully comprehend her impact on our lives. Aria may not have been here long, but she is just as much our child as you are your parent’s child. We loved her just the same.

For us, 1+1=3, and I hope that when you see us, you see all three of us too.