She could have been anything.

Today I saw a post on Instagram, asking moms who have lost little ones what they wondered about the futures they could have had. Specifically, what they could have been if they had the chance to grow into adulthood.

And I thought about Aria, and what she could have been, which took me right back to the thoughts and conversations I often had during my pregnancy.

It was very important to me that she grew up to believe she had the ability to be absolutely anything she wanted to be. I worried constantly about making sure we never placed invisible borders around her.

We often called her a princess, simply because she was our girl, and we’ve got a huge love for Disney. But I remember thinking I didn’t want to call her that too much, just in case she wanted to be a knight instead. Or a doctor. Or a veterinarian. Or an Artist. I never wanted her to believe she had to fit into a mold. I even remember having a hormonal moment about baby dolls, because I was frustrated that all the ones in the store had blonde hair and blue eyes. I was infuriated. One thing I knew for sure, with me being Korean with dark hair and brown eyes, and my husband also having dark hair and brown eyes, was that Aria would have dark hair and brown eyes. I was terrified of her growing up in a world where the standard of beauty was something other than the race she was, and features she had. I grew up that way, and I didn’t want it for her.

I wanted her to look at the world and see endless opportunity. So being here, on this side of heaven, living life without Aria in my arms, it feels as if the world has lost so much. She could have been absolutely anything. She could have been a revolutionary research scientist. She could have been the author of the next great American novel. She could have been the inventor of a life saving medical device. She could have painted a portrait to rival the Mona Lisa. She could have been a mother, raising children who would change the world just as she did. She could have been anything, and now we’ll never know.

I suppose that is why we’re so dedicated to doing good things in her honor. I know she would have been a world changer, and I’ve got to try to accomplish some of it in honor of the legacy she would have left, if only she had the chance.

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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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A recap of Aria’s first birthday.

I’ve finally had a chance to unwind from our trip to Maryland to celebrate Aria’s first birthday. Although, this day of rest wasn’t exactly voluntary. Traveling in the middle of flu season is always a risky move, and it has gotten the best of me this time. So I’m taking a day to recoup while downing multiple bowls of chicken soup.

I figured since I wasn’t doing anything productive aside from rewatching every episode of Dawson’s Creek, I might as well write a post recapping Aria’s first birthday.

Her birthday went nothing like I expected, but a lot like I had hoped. I tried really hard not to make assumptions on how I thought I might feel on her birthday because grief is so unpredictable that there is no point in forecasting it. I figured it was best to let the chips fall where they may, and handle each emotion as it came.

My biggest hope for her birthday was that it would be celebratory. After all, a birthday is about celebrating birth. It is about your entrance into the world regardless of how long a life was lived or even if a baby was born still. A birth is a birthday.

Because of this, I wanted to separate Aria’s birth and death into two separate events. This was so hard to do since they both occurred during the same afternoon. So I kept reminding myself that we already had a year full of days spent lamenting the loss of her. This day, her birthday, was about life. Although, it would have been just fine if I spent the day crying my eyes out. All of these things are displays of love, and that is completely ok.

I woke up that morning in a brief state of shock. Could it be? A year, already? I couldn’t believe we had survived a full twelve months since saying, “See you later, Aria.” For a year that had so many grueling days, it went by incredibly fast.

We had several errands to run before we were to meet with friends and family at the cemetery at 4:15, so we got up and hit the ground running. Our first stop was a local party supply store to pick up a few pink balloons. While the sales associate was filling our balloons with helium he asked, “Are these for a little girl’s birthday?” I smiled and said, “Yep!” I was so grateful for that moment. I didn’t have to say anything about Aria not being physically present for her party, or share that she had died. I got one brief moment of normal motherhood and I relished in it.

After that, Brian and I picked up her cake, then came back to my parents house to set up everything and prep the food. I kept asking Brian if we were doing too much. I couldn’t help but wonder, would people think we were crazy for throwing such a big party for a little girl who has passed away? But Brian was so persistent in reminding me that it did not matter what anyone else thought. We have every right to continue parenting Aria beyond the grave, and anyone who has walked in our shoes would completely understand.

I knew I was running out of time and needed to hop in the shower. But when I looked at the clock, I realized I needed to wait a few minutes. It was almost 3:06 PM, the exact time Aria came earth side. Brian and I stood in the kitchen waiting for the clock to strike 3:06. It did, stayed that way for sixty seconds, then changed to 3:07. I was somewhat surprised and disappointed time didn’t stop. It sure seemed to one year ago.

Finally the time had come for us to make our way to the cemetery to meet our friends and family. I was not pleased that it was raining, but as my best friend so eloquently stated, “Aria can’t give us a rainbow without a little rain.”

While at the cemetery, we stood by her grave that was covered in pink flowers. I read a letter I had written for Aria, specifically for this day. We then prayed the same prayer that our Chaplain at the Children’s Hospital had written on the day we said our final goodbyes to Aria’s body. We wished her a happy birthday, and reminded her that she is so loved.

We also decided to do something we had debated about for quite some time. While I was still in the early stages of pregnancy, Brian and I agreed that we wanted to ask our friends M and T (names withheld for privacy) if they would be Aria’s godparents. Our lives became so hectic once Aria was diagnosed, we never had the chance to ask them before she passed. We figured there wasn’t a point after that. But over the last year, they acted exactly as Godparents do. They made it a point to visit Aria’s grave when they were in town, sent us pictures of her beautiful decorations, stood bravely beside us as we battled with grief, and refused to let us walk alone. They were already her Godparents, whether they knew it or not. So as we all stood around her grave, we finally asked the question that never really needed to be asked, “Will you be Aria’s Godparents?” And they accepted.

Then we all went back to my parents house where we ate, talked, laughed, and celebrated. I loved that despite such unique circumstances, it still felt like a normal party. It felt right, and it felt good.

At the end of the meal, we gathered around the tv and watched a video that I had been working on for a few months. It was a collection of our most sacred memories from Aria’s life. We loved being able to share those moments with our loved ones.

Of course, all good parties need cake, and this one was no different. We had a little vanilla cake with an elephant on top. The elephant was so perfect for our little girl, as it also wore a pink bow and clutched a yellow blankie. We lit a glittery pink “1” candle on her cake, and handed out candles for all of our guests. We asked each of them to make a special wish in honor of Aria after we sang “Happy Birthday” and the traditional Rose family birthday song. It was a beautiful moment of remembrance and celebration.

I can’t thank everyone enough for all of their prayers, birthday wishes, and the kind gestures we received. The love we received that day was overwhelming in the greatest way. I know there are many people who wish they could have been with us physically, but your love was still felt. I believe the day would have been so different if we hadn’t felt so supported by so many wonderful people. You held our broken hearts together so we could focus on celebrating Aria. As Brian and I were preparing for bed that evening, he said, “My heart feels full.” And I replied, “Me too.” I think that was the greatest gift of all.

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Dear Aria: A letter to our daughter on her first birthday.

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Dear Aria,

It has been quite a year. We’ve experienced such deep sadness, and our arms have felt an emptiness far greater than we could have ever imagined. And yet, there was also joy. There were many moments when we saw pieces of you, and your legacy poured out all over this earth. Your story has reached people in so many different corners of the world. So I want you to know this, your father and I are so proud of you.

I often fear that you left this world without knowing the real story, so I think it is important to share it with you. You see, sweet girl, you were very sick. Your little lungs were so damaged, and your tiny heart was under a lot of pressure. Everyone says this happened because you had a birth defect, and I strongly disagree. I dislike anything that implies you were defective because that simply isn’t true. You were fearfully and wonderfully made. Every inch of you was a shining symbol of God’s grace. You were full of beauty, and had a personality that shined even before you were born. So I really want you to know, that this happened not because you were not enough, but simply because our world didn’t have the means to sustain the body that held your unique and perfect soul. Your life was a precious gift, and one that we are honored to have been a part of.

Today is a really special day for so many reasons. Exactly one year ago, you emerged from the womb that grew you for twenty six weeks and three days. We finally got to see your face for the very first time, and your beauty completely astounded us. We got to hold you, our sweet little girl, and shower you with kisses. You finally felt the warmth of your Daddy’s arms that I have loved all these years. You got to prove your mama wrong when you showed us you didn’t have my forehead like I had proclaimed, and instead an exact copy of your father’s. But that doesn’t surprise me much; as I had a feeling you were a Daddy’s girl through and through.

It was on this day, on year ago, that your little lungs breathed oxygen for the very first time. But that miraculous moment didn’t last nearly as long as we had hoped. So although we celebrate your life today, we also lament your passing. This is not the outcome we had hoped for, and it completely shatters our hearts. Every single cell in our bodies yearns for you, and I could never adequately explain how much we miss you.

But it is you who also calms my soul as I grieve today, because I know you would want the tears to be brief. I know this because while I carried you, every single time I would cry, you kicked your hardest, and you would not stop until my tears dried up. You told me then, and I know you are still telling me now: “It’s okay, mama.” So, I’m going to do my best to celebrate you in the way you would have wanted.

Happy first birthday, my sweet Aria girl. I hope you are enjoying the singing of angels, and are dancing alongside all our loved ones who have gone before us. Tonight, as the sky turns dark, I’ll be thinking of you, and hoping that it’s you blowing out your birthday candles.

Love,
Mom

Aria’s Story: The day we left the hospital.

I was discharged from the hospital four days after delivering Aria. I needed to be closely monitored to make sure all of my symptoms of mirror syndrome had resolved, so I was in the hospital a bit longer than normal. Once my labs showed my liver was functioning again and my blood pressure was in a normal range, we were free to go.

Honestly, I was really afraid of leaving. The doctor on call that morning commented that I was probably sick of being stuck in the hospital, but I would have stayed longer if I could. Stepping out of the hospital doors meant I couldn’t hide anymore. I had to face reality and I wasn’t sure I could.

As Brian packed up the room, the lead doctor on our case came in to say goodbye. She hugged me tightly and reassured us that we were not going through this alone. Then she said the most important, and meaningful thing anyone has ever said to me.

I want you to always listen to your heart. You followed your heart with every decision you made for Aria, and every time, you were right. Trust your heart.

I have replayed those words in my head a million times since that day. They have brought me through so many moments of doubt.

After she left, Brian and I stood in the room and wept. For the first time, we understood that Aria was gone, and we had to keep going without her. We looked around the room, replaying each memory of our daughter’s brief life. Once we got ourselves together, and started to exit the room, Brian stopped. “I want to pray for the next family who uses this room.”

The Special Delivery Unit at CHOP is only used by mothers carrying babies with birth defects that need specialized and intensive care or fetal surgeries. Although they perform life saving miracles on a daily basis, they endure many losses. We were just one of many grieving families during our stay. We knew my hospital room would house more families in our situation in the future, and we prayed they would find peace. Our hearts ached as we thought about the parents who would soon know the pain we were feeling. We wished it could be different for them, and their precious babies.

As we walked out of my room and into the hallway, I cradled a colorful bouquet of flowers in my arms. I had decided that if I wasn’t walking out of here holding Aria, I was going to carry something beautiful in her honor. We were stopped every few feet by nurses, given tearful goodbyes, and warm hugs. We were told to send Christmas cards, and repeatedly reminded that we were not alone.

Somehow, we managed to walk out of the hospital and to the car without completely breaking down. Brian started the car and said “Ok, Aria. We are going to do this. We are going to be strong for you.”

As we drove away from the hospital, the sun shined on my face. It felt like a warm embrace, and it was then that I fully realized that Aria was still with me, and always would be.

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.

Happy Half Birthday, Aria.

Six months.

Six months since I last felt you move inside of my womb.

Six months since I rested my cheek against yours.

Six months since we held you in our arms.

Six months since we kissed your tiny lips.

Six months since we caressed your head full of hair.

Six months since we said goodbye.

Six months of heartache and tears.

Six months of fighting to make sure no one forgets.

Six months of building your legacy.

Six months of navigating life as parents without living children.

Six months.

In many ways it has flown by, and at times it has dragged on at a snails pace.

Half a year. 26 weeks. 182 days. 4,380 hours. 262,800 minutes.

Six months of loving you more each day.

Six months of finding pieces of you in everything we do.

Six months of celebrating your brief yet beautiful life.

Six months of learning to find joy again.

Six months of finding kindness in places, and in people we never expected.

Six months of cherishing life more than ever before.

Six months gone, six months closer to seeing you in heaven.

Happy half birthday, Aria. We love you, sweet baby girl.