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.

Loss after Loss

Miscarriage after infant loss is so hard. It’s messy, and the mixed emotions are endless.

When I first found out my hormone levels weren’t where they should be at the start of my second pregnancy, I was instantly worried this was a sign that something was very wrong with our baby. I wasn’t really thinking that this meant I would miscarry. I was afraid of a congenital defect, and going through what we experienced with Aria all over again.

Honestly, I never really thought this baby would die. I guess a part of me still assumed that this world wouldn’t be that cruel, and yet it was.

However, this loss feels very different. In some ways, it hurts less and in others it hurts more. It’s hard to compare the two losses.

After Aria, I didn’t return to work for 19 months. I just couldn’t. I wasn’t ready. When I miscarried, my loss was confirmed on a Saturday and I was back at work on Tuesday morning. (Thankfully, it was a holiday weekend.) I wasn’t really ready to come back to work then, but I also wasn’t ready to tell my coworkers about it so it felt easier to just resume as normal. Looking back, I should have taken time to process, grieve, and physically complete the miscarriage process before going back to work. It would have saved me some trauma.

My miscarriage also felt very isolating. During and immediately after Aria’s birth, I was surrounded by people who showered me with love and support. The staff at CHOP were absolutely wonderful. But when I miscarried at home, I had only my husband present, and my family who comforted from afar. They all did such a wonderful job supporting me, but it was vastly different from what I experienced with my first loss, and I wished multiple times that the support could have been more like my first.

Overall, I think one of the biggest hurdles for me post miscarriage is feeling like I can’t grieve. So many of the staff members at the hospital were shrugging me off as “just another miscarriage,” and acted like they were treating me for a common medical condition instead of the loss of my second child.

I think that after Aria, I felt like my grief was more socially acceptable. I held a child as she lived and breathed. I held her as her heart beat one final time. Then I had to let her body go. I picked a casket, funeral flowers, and a burial plot. I came home to an empty crib, unworn onesies, and toys that would never be needed. So of course, I was devastated. Anyone who heard my story could completely understand that I was absolutely broken by this. They expected that.

I didn’t feel like I was given that kind of space to grieve after my miscarriage. People just said they were sorry one time, told me miscarriage was common, then asked if we were going to try again.

But I’m devastated. The one thing I clung to after Aria was the hope of having another child. Not to replace Aria, but to fulfill the desire to parent a child on this earth. I don’t feel like I have that anymore. The doubt is so real this time around. Even after being told both losses were random and not expected to happen again, I don’t feel like I’ll ever get to bring a baby home. It’s hard to see the point in ever trying again. It almost feels easier to stop trying, and stop opening my heart, so it won’t keep breaking over and over again.

Going forward from here is very confusing. I don’t have a single idea of what my life is going to look like in the coming years. It’s scary. But I’m trying very hard to believe there is still so much good left for me to uncover.


“Get out of bed. Brush your teeth. Shower. Wash your face. Brush your hair. Eat. Drink some water.”

Several days ago I found myself at this point with grief, yet again. Getting back to the basics, constantly reminding myself that at the very least, I need to take care of my body each day.

I had been doing well considering everything we had been through. But tragedy brought me there once again.

It is with a heavy heart that we share the news that we have miscarried our second baby.

We prayed so hard for this baby, and we fell madly in love during the short period of time that we had together. We let ourselves feel hope and joy we hadn’t felt in such a long time. Now we are feeling levels of grief we hadn’t felt in such a long time.

Yes, I will admit this loss is different than what we endured with Aria, but it is painful nonetheless.

I had written a few posts during our brief time with this little babe, and I’ll be sharing them in time. There aren’t as many of us who have felt the sting of loss twice, but I feel it’s important to be a voice in this community of those who have.

In the mean time, please pray for our hearts as we glue them back together for a second time.

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

Searching for the end of our rainbow.

There’s a desire that often occurs when a woman loses a baby, no matter if it is an early first trimester loss, a stillbirth, or their baby died after birth. It is the desire to try again, to bring forth another life. To have a child you can birth alive, and raise for a lifetime.

It is such a huge topic of discussion in loss support groups. Mothers discuss when they should try again, and search for hopeful stories of women who conceived again immediately following their losses and had healthy babies.

Although there is some controversy about this term among loss parents, these babies born after a loss are often called “Rainbow Babies.” It is a term used to describe the hope they bring after the storm that follows the loss of a very loved child.

And this topic has always been hard for me.

The moment after I held Aria in my arms for the last time, I instantly felt a void that I needed to fill. What most people don’t understand is that my desire to have another baby wasn’t just because I wanted to get back to being a mom. Every hormone in my postpartum body was raging inside me, frantically trying to make sense of the disaster that had just occurred. Losing a child is not the natural order of things. My mothering instincts were never prepared for this moment. I just grew a child in my womb, and now she has been birthed, so my brain couldn’t understand why a child wasn’t in my arms. My breasts swelled so large I thought they might burst, and they ached as they carried a supply of milk that was no longer needed. As my milk leaked out of me, I wondered if it was the tears of my mothering spirit, for I could feel her grieving too.

But I am unlike the majority of mothers who have lost. You see, the day Aria was born I asked if I could try again right away. I was told, “absolutely not.” I was told my body needed time to heal. I was told that carrying such a sick child had serious complications and I needed to recover from them before I could become pregnant again. It was like daggers through my heart. It felt like I was being punished for choosing to continue Aria’s life despite her diagnosis. Even though I knew termination was never the right choice for us, it stung to know that if I had taken that path, I would have been able to try again almost immediately.

Anyone who has ever lost a baby knows the desire to have another right away, so I know I don’t have to explain it any further for them. And for those who haven’t, I simply hope they never will.

I painstakingly trudged through that next chapter of my life, waiting for the green light that would bring hope sweeping back into my life. I put on a smile and pretended I was perfectly patient when people asked “Are you going to try again soon?” Then I’d run off and cry, thinking how unfair it was that I couldn’t even live up to everyone’s expectations about how motherhood should look after a loss.

And finally, after many months of fear, I was cleared to carry another baby. My exam and blood work all came back perfect! I was healed and healthy. I nearly cried as the nurse told me my labs were normal. I remember going into the bottom of a drawer, where I kept a gift I had purchased nearly a year before, and holding it to my chest as tears of hope rolled down my cheeks. It was a gift that I had hoped to give to Brian when I became pregnant for the second time. And today, it still sits in the bottom of that drawer.

A few weeks ago, I finally went in for a doctors appointment I had been putting off for quite a while. I was afraid of being on the receiving end of more bad news, and I hoped that by assuming everything was fine, it would be. But it was time to be brave. I owed myself answers, even if they weren’t good ones. I have had several tests done, and am now impatiently awaiting the results. Those tests will determine our next steps. I could finally receive a diagnosis, in which case we may decide to begin our first round of fertility treatments. Or they could say nothing – which is almost the result I fear most. Sure it’s great to be told you’re healthy, but none of that explains the many roadblocks we have faced over the last three and a half years on our journey to parenthood. Sometimes no news is good news, and sometimes it’s just really really confusing.

Every day of the last eighteen months, the emotions of this entire process have weighed heavier and heavier on my heart. We’ve had so much time to dream about another child that we already have baby names picked. Both for a boy and a girl, and even back up names on the off chance it’s twins. I’ve got paint colors and nursery designs all dreamed up in my head. I even bought a sweet little onesie that says, “worth the wait”. I am so ready to be a mom again. I’m just waiting for it to finally be my turn.

But there’s fear. So much fear. What if we can’t get pregnant again? What if we do but not for a very long time? How will my heart find the strength to continue this journey? What if we get pregnant again but we lose that baby too? What if? What if? What if…

By now, you may be wondering why I’m sharing all of this so publicly. I certainly am. I have typed and deleted this post more times than I can count. I feel like it may border a bit on oversharing, as a lot of people don’t want to know all the details on how you conceived a baby. But I have held this part of my journey inside of me for eighteen months now. I never even felt brave enough to bring up the topic of trying again during all the months I spent in therapy. But I guess it’s true what they say about bottling things up, they explode at some point. So I guess this is me letting it out before I burst.

And well, a few prayers from those who are reading this would definitely be helpful too. Because one day, I want to think about me when I was six years old, pushing a baby doll in a stroller and telling everyone that all I wanted to be when I grew up is a mom, and know that little girl got her wish.

A post about feelings and being heard.

Your feelings are valid. Your feelings are valid. Your feelings are valid.

I don’t think the grieving hear that enough. Actually, I don’t think people in general hear that enough.

After my daughter’s passing, as I began to grieve the loss of my only child, I was constantly facing this belief that I needed to grieve in a way that was neat and tidy. It needed to be linear, and I needed to rise each day feeling better than the last. People began preaching platitudes about time healing all things, and telling me how important it was that I handled this gracefully.

After the first few months, I found myself feeling guilty for not improving each day. I would have days of great joy only to find myself incapable of getting out of bed the next day. This wasn’t the journey with grief people had been describing so I wondered, what was I doing wrong? I was also getting frustrated that instead of always walking on the bright side, I often turned to bitterness and anger. I didn’t want to be that kind of person, and I never had been in the past. I wanted desperately to change that, but I just couldn’t find the strength to move beyond it. The littlest things would send me into a tailspin, and well meaning but poorly worded comments would cause anger and resentment to well up inside of me. I felt so devoid of grace and I couldn’t stand it. I knew people weren’t intentionally trying to hurt me, so I tried really hard to suppress my anger but that only made it worse. I felt like I was constantly being forced to forgive people who weren’t even sorry, or were totally unaware of what they had put me through.

David Augsburger, an American author and theologian once said, “Being heard is so close to being loved that for the average person they are almost indistinguishable.” And the truth is that it wasn’t just the comments that were upsetting me, it was that I also felt like I couldn’t voice my feelings without someone misunderstanding or becoming defensive. I just wanted to be heard because it made me feel like people cared. It’s not that I didn’t know I was reacting in an extreme way, but I had also been through an extreme loss. It’s completely normal to want to fly off the handle over things that most people wouldn’t bat an eyelash over.

While time hasn’t healed my wounds, time has allowed me to become intimately familiar with my grief. I have developed such an understanding of it that carrying it no longer feels as heavy. So now when someone says something I don’t approve of, I analyze it. I ask myself if it is worth correcting, or if that would only create a bigger divide. I also think about where that person is coming from, and what they are walking through that may have caused them to be a little less understanding. If I can’t come to my own conclusion, I consult someone I trust who can talk through the situation with me. A lot of times, just being heard by someone is enough for me to extinguish the fire in my heart. There is immense healing power in being able to say, “This hurt me.” And for someone to simply respond with, “I understand.”

So I want you to know, your feelings are valid. Even when they are selfish. Even if they are tinged with jealousy. Even if they are mixed with wounds from decades prior. Even if they don’t fit the mold of grief that people are telling you to fill.

The important thing is what you do with those feelings. I encourage you to find a safe, and secure space to express those feelings where you won’t be judged or chastised. This blog, counseling, and confiding in friends and family have all been excellent ways for me to do that. They have helped me find appropriate responses to those feelings so that I could prevent them from continuing to weigh me down. Truthfully, I think that is something we all could benefit from, whether we are grieving or not.