Dear Aria: A letter to our baby girl on her second birthday in heaven.

Sweet Aria,

If I could sneak into heaven today, I would do it bright and early. I’d tip toe into your room and kneel alongside your bed. I would pause for a moment as you slept, and take in the sight of you, my perfect sleeping angel. I’d brush the wisps of hair from your eyes, and whisper, “good morning, birthday girl!”

But today I will whisper from afar, and pray that you can hear me.

“Good Morning, birthday girl.”

Two. Sweet girl, today you are two. In the blink of an eye, two full years have passed since we first held you in our arms. Two years since you took those big beautiful breaths, showing us just how strong and brave you are.

I could spend hours repeating how much I miss you and wish you were here, yet deep down I know that you wouldn’t wish for that. Today is a day to celebrate. Today is about giving thanks for the gift that was and is your brief and perfect life.

So today there will be cake, there will be the Rose family birthday song, there will be birthday candles in remembrance of you. There will be joy, there will be laughter, and most of all, there will be love.

I hope you have the most wonderful second birthday in heaven sweet baby. I hope all of your wishes come true. I hope you have a belly full of birthday cake, and a heart that knows just how much you are loved.

We miss you. We wish you were here.

Happy Birthday, Aria.


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?”
“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.

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.

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.

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.





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


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.


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.