Luca’s Story – Part 5 – Mother’s Day

I hope everyone had a wonderful Thanksgiving!  I have to admit, that was a hard day for me… but it got better.  Waking up on my most favorite holiday and preparing the food without Luca here to celebrate with us was painful.  I cried a lot.  But, my caring and patient husband helped me through the day, and we were so fortunate to spend the holiday with some of our closest friends who really are such a source of comfort for me.  We lit a special angel candle for Luca and our friends included him in their Thanksgiving prayer.  I also made some butterfly cookies to include with the desserts.  I am so very thankful for these friends who always remember Luca, yet also treat me like a normal person.  I treasure these friendships where I can talk openly about my son if I want, and not be stopped by silence.  Thank you, thank you. ❤

My mom surprised me recently with new plants for Luca’s grave!  For fall he had pumpkins, but he needed something new for Christmas and a cold New England winter.  She hired a gardener who planted tulip, crocus, hyacinth, and narcissus bulbs for spring in the shape of a heart – I love it!  They also planted two miniature evergreens for Christmas.

It gives me a lot of peace to know that Luca’s grave is being so well cared for back home and is looking so beautiful.


 

If this is your first time reading about Luca’s story, you can read the previous posts here.  It’s been a little bit since my last “chapter” shall I say… We left off towards the end of my Connecticut trip before I flew south for my friend’s wedding.

During the last few days at home in CT, I packed and got ready to leave for the wedding, which was in Naples, Florida.  I packed up everything for the wedding and then everything else so that my bags would be ready for my trek back to Japan, since I had to depart the day after we returned from Naples.  It was so hard to pack up all of the gifts that everyone had given to me at my baby shower.  I kept almost everything, except for some things that I had purchased on my own while at home which I returned. My mom went to the Carter’s outlet for me to return a huge bag of clothing, because I could not bear to step foot in that store.  I’m sure that was so hard for her too.

My mom and I headed to Naples early the Friday before Mother’s Day.  I was going through the airport security area and looking pretty large (I think I was about 30 weeks at that point) and this woman stopped me and asked how pregnant I was.  I answered and she said, “Ohhhh, I wouldn’t be traveling THAT pregnant” with a super judgey face.  Sometimes I really want to slap people.  I didn’t respond at all, but really wanted to tell her how my husband was DEPLOYED and my baby boy was DYING and I’m about to take 30 hours of air travel to JAPAN in a few days, so maybe she should lay off and keep her mouth shut.  Experiencing the loss of my son has definitely taught me to be more gentle and understanding (something I need to work on daily) – that you never know what someone is going through, so do not be quick to judge.

Anyway, when my mom and I arrived to Naples and saw the gorgeous bride-to-be and stunning waterfront hotel, I was glad we had made the trip.  I was honored to be one of Allison’s bridesmaids and was so glad that I could be there for her most special day.  Before I had arrived we talked about how we would handle the weekend.  We agreed that I wanted her to tell her parents and the bridal party about my situation that way people wouldn’t ask too many questions about the baby.  At that point, it was just days after we were given the fatal diagnosis and anything would set me off.  It would have been very painful to have people go on and on asking typical pregnancy and baby questions at that particular time.  Allison’s friends and family are wonderful people and the wedding was small, so I truly felt like I was with my own family.  Even though I was tired and my feet and back hurt, my mom I and danced the night away (thank you, bride, for providing us with flip flips!).  Looking back at the photos from that day, it makes me smile to remember the fun we had that weekend celebrating the bride and groom with little Luca in my belly, even in the midst of such a difficult time.

The day after the wedding was Mother’s Day.  My mom desperately wanted to find a way to cheer me up.  I could tell she was heartbroken for me and wanted to try to put a smile on my face.  But, it just wasn’t an easy time for me to smile.  She surprised me with a pair of glitzy sandals from the hotel gift shop that were exorbitantly priced – she tried everything to make me happier. The bride and groom hosted a lovely farewell brunch for everyone, and then my mom and I decided to treat each other to the spa for Mother’s Day, since we were staying until the next morning.  The spa attendant was a friendly, young guy and looked at me with a big smile on his face and said, “This must be the happiest Mother’s Day ever for you!”  I tried to smile back at him and hold back the tears.  I turned away and pretended to browse.  He began to tell my mom about the baby girl his wife just had and how life changing and special she was.  Thankfully, we were taken into our separate rooms shortly after.  I had a facial and the woman talked non-stop about my belly and baby and wanted to know everything about him and our plans.  I could barely keep myself together and just stopped responding to her until finally she got the message that I did not want to talk.  I felt badly that people were just trying to be nice and friendly and saying all the things that any mom-to-be would want to hear, but to me it was just a reminder of the nightmare I was living.

That night, I emailed my closest friend in Japan who was planning my shower.  I asked her to please cancel my baby shower, which was planned for less than two weeks later.  She had worked so hard and I had been looking forward to that day so much – spending the day celebrating my baby with my friends who were like my family – but there was no way it could happen now.  I asked her to please send this message to the guests:

As some of you know, our baby was diagnosed with a rare heart condition a few weeks ago. While this was scary enough, we had hope that with multiple surgeries he could live a healthy, normal life. A few days ago, we learned that he also has a rare chromosomal abnormality. The combination we are dealing with is extremely rare and these diagnoses together are unsurvivable. Whenever he decides to arrive, our sweet baby boy may live minutes to days at most. Our hearts are completely broken, but we will cherish every second that God gives us with him. We ask for you to please pray for our family and beautiful baby. There are just no words to describe how difficult this is and we are just trying to take one day at a time as we accept this reality. We appreciate your love and support. 

I couldn’t sleep, so I tried to be productive.  I emailed Dr. Fumi, my doctor in Okinawa to set up an appointment for Joe and I to meet with her and talk about everything.  I messaged my friend who is a nurse at the military hospital to set up a plan of action in case we wanted to change hospitals.  I wanted to consider all of our options.  Thank goodness I had her, because it was nearly impossible to contact the OBGYN clinic from the U.S. with the time difference.  I contacted my doula to set up a meeting with her to tell her the news and develop a plan.  My mom woke up and asked if I was okay and told me to please try to sleep.  I said okay, then snuck into the bathroom and sat on the floor researching birth photographers. I messaged three of them, explaining our situation and asking if they would be interested.  I was shocked by two immediate responses from the two photographers I wanted most.  One photographer said she was sorry she would not be available during the dates that I needed, but that she had lost her own baby years ago.  She offered to meet with me and be a shoulder to lean on any time I needed her.  That was one of the first times I realized that I was not alone and it was so comforting.  The other photographer messaged me right back and said it would be her honor to photograph our birth and baby and that she would not accept any payment for it.  I could not believe it.  I would have paid any amount of money for these photos, but she would not accept.  This was one of the greatest gifts anyone could give to us.

Getting all of those little plans worked out were ways that I felt that my husband and I could be good parents to Luca.  I knew I wouldn’t get to make many parental decisions in his short life, so I wanted to work very hard to make sure that everything was planned as best I could for the day of his birth.

Two days later, after saying goodbye to family, I began my very long journey back to Okinawa. It was a pretty tiring journey for a 30 weeks pregnant lady (or anyone for that matter), but I was so looking forward to getting back to my husband and my own bed.  I still cannot believe that we got through so much while being so far apart from each other, and I knew that just being physically together would make things a little easier.


 

One thing about living overseas in the military is the post office.  Particularly the post office at Christmastime.  Things can take forever to ship here, so it’s very exciting when they arrive!  However, it’s nearly impossible to surprise your husband with a gift, since the contents of each package are listed on the customs form on the box. Grrrr.  My husband went to get a package the other day that I was sure was a pair of shoes I ordered; however, it was really a very special Christmas present I ordered for him.  He came home and said, “I don’t think I was supposed to see that!” It didn’t matter because I was so excited that his gift had arrived that I had to give it to him early anyway.

For months, I have been tracking down the two outfits that Luca ever wore – the outfit he had on when we had him at the hospital and the outfit that he was buried in.  Both prints were not being manufactured anymore, but I was able to get one of them from another mom on base.  The other one was more difficult to track down, so my mother helped me out.  She went to Just Hatched in my hometown where it was purchased and explained the situation.  The very nice owner did not have any of that outfit left, so she called the manufacturer (Kickee Pants) and they sent three of the little outfits that Luca wore at the hospital!  I sent all of that to this amazing Etsy shop to have this little memory bear made.  I call him our “Luca Bear.” Isn’t he the cutest???  This little bear made my week! (And my husband loved him too. 🙂 )

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There are so many ways to remember a loved one and we are happy to have this to remind us of our little love. ❤

 

Getting Away

Normally, I try to post weekly to this blog, but with being on vacation and gearing up for Thanksgiving, it’s been a busy week!  Since I do this blog mostly for myself, I’ve made it a rule that I will never rush through a post for the sake of getting it done.  I really want to take the time to organize my thoughts, so for that reason I’m sorry I missed posting last week!

Last week, my husband and I managed to get away and take a vacation to Kyoto in mainland Japan.  We haven’t had a real vacation in quite some time, especially just the two of us.  He did take me on a work related trip back in July, but since it was an evacuation for a huge typhoon, I am not counting that as a vacation!  Anyway, with everything that has happened this year, including funeral expenses for Luca and my husband starting a busy job, vacation just hasn’t been at the forefront of our minds, but I knew we really had to plan something for ourselves, so we succeeded in booking a last minute trip to Kyoto and I’m so glad we did!

To me, Kyoto is like the New England of Japan – so much history and beautiful fall weather and foliage.  We lucked out and I think we were there for the peak of the foliage.  I had seen pictures of Kyoto, but didn’t believe that it was actually going to be that beautiful.  I was wrong; it was even more gorgeous than I could have imagined!  We climbed Monkey Mountain, rode a rickshaw through Arashiyama’s bamboo forest, enjoyed a traditional kaiseki meal, participated in a traditional tea ceremony, and toured so many gorgeous temples and shrines.

While it was so nice to have a relaxing time with my husband, our vacation always highlighted that Luca wasn’t there with us.  I imagined carrying him around in the baby carrier everywhere we went as he happily took in the surroundings.  I thought about how our trip would be so different if he was here.  We would trade our late dinner dates for early nights in to tuck him into bed.  I would have had to bundle him up in warmer clothes, since it was much chillier in Kyoto.  Most of the time, I was able to smile when I thought of him, but sometimes the solemn silence and peacefulness of the temples we walked though and the surrounding natural beauty gave my emotions nowhere to hide.

On our last full day in Kyoto, we had a wonderful, friendly guide, Ayano-San.  She is a student at a Kyoto university and is part of the Good Samaritan Club, which is a group of students who volunteer their time as tour guides in order to practice their English.  All we had to do was pay for her meals and entrance fees to the various tourist spots.  It was Ayano’s first time being a tour guide by herself and she was amazing!  She asked me ahead of time if there was anything in particular that we wanted to see aside from the packed schedule she had suggested for us.  I had heard about certain temples that had special areas and rituals to honor babies and wanted to find these places.  I looked online, but couldn’t find much information, since everything was in Japanese.  I was hesitant to ask Ayano, since it was such a sad and sensitive subject and most Japanese people who hear about Luca do not want to talk about it, as I’m sure they have no idea what to say or how to react, not to mention with the language barrier it’s impossible for them to know what to say.  However, I took the chance and told Ayano I really wanted to find these places.  She was so mature for a 19-year old and worked so hard for us tracking down the answer to our one request.  She found two temples to take us to in order to learn about how Japanese people honor their babies that have died.

One place we went to was Sanjusangendo Temple.  This was a huge Buddhist temple, built in 1164, that is best known for the 1,001 statues of Kannon, the goddess of mercy.  While Kannon is the Japanese name, Guanine is the Chinese name, which means “perceiving the cries of the world.”  This temple was absolutely incredible.  I wish I could have taken pictures of this amazing sight, but no photography was allowed.  (Google it!)  While I am not Buddhist, I am always so interested in learning about other religions, particularly in Japan since we live here.  And, I welcome anyone to pray for my baby or send him good thoughts. 🙂  One of the monks explained to us (with Ayano’s translation help) that the temple offered three wooden tablets (Ayano called them amulets) – a thin piece of wood with Japanese writing – one for adults, one for babies, and one for ancestors.  We selected the one for babies and the monk asked us to please write Luca’s name on it.  Then he had us carefully pronounce his name so he could rewrite it in Japanese, so that he would know how to pronounce it when he prayed.  The monks at that temple would keep this amulet to chant a sutra and pray for our Luca for one week, then after that week, it would be burned.

The other temple we went to was Tohfukuji Reigen-in Temple.  This temple practices Mizuko Kuyou, a Japanese Buddhist ceremony, which roughly translates to “water child memorial service.” This ceremony is a way for Buddhists to recognize children lost from miscarriages and stillbirths and honors Jizo, the god responsible for bringing babies to “the other world,” where the baby can then be reborn into the future.  In the past, mizuko (“water child”) were buried under the parents’ home, and are believed to go from the water of the womb back to their natural form upon death, and flow into the natural springs of the earth.

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Reigen-in Temple, Kyoto

We were permitted to enter a special area of the temple where parents displayed small statues of Jizo in honor of the children they had lost.  (This is similar to what we saw.)  The tiny statues all had red bibs and other personal adornments like tiny hats and other little items that each family had left in memory of their baby.  The bib and adornments are set out to thank Jizo for saving the baby from an illness, or to ask him to protect that baby.  It was incredibly emotional for both me and my husband to see all of these little memorials to so many babies that had been lost who were just like Luca.  Luca’s room is our special place to remember him and I felt like the parents who had placed those statues there were proudly telling us about their babies, just as I do when I show someone Luca’s room or tell his story.  Everything was placed with such care and I could tell that each little decoration had such special meaning to the family that had put them there.  It was truly an honor to spend time in this temple and learn how many Japanese people honor their babies. It was sad, but comforting to know that we were not alone in both our sorrow and our wishes to remember our child.

With the holidays quickly approaching, I worry about how we will handle them without Luca.  Already, the stores are getting more crowded and crazy and I have to admit it can give me a lot of anxiety.  When I attend events with a lot of strangers or run to grab groceries when the commissary is packed with people, I tend to get pretty anxious, sometimes to the point where I feel like I need to get away immediately. For some reason it just stresses me to be around so many people who don’t know about Luca.  They are going about their day, toting their kids around, happily running their errands, or getting irritated with life’s smallest annoyances, while I am carrying this enormous sadness that they do not know about, or that can’t be talked about.

After visiting all of these temples and shrines, I read about some of the Buddhist teachings, like this story here.  As this story teaches, I must remember that even though many times I feel like I am the only one who can understand such suffering, that is not the case.  So many others have experienced terrible losses in their life.  Like all of the parents who placed Jizo in that temple for their own babies.  And probably many of the people who I walk by at the grocery store or post office every day.  I’m trying to remind myself, lately, that I can help myself through those anxious moments by reminding myself of these things… and also by telling people I encounter about Luca, which makes me the happiest.


When I was on my way to teach this week, I encountered this beautiful butterfly!  I really do see butterflies EVERYWHERE I go – this is proof!   And they always remind of my angel.  This one hung around for awhile and let me get very close to him.  I didn’t notice until after, but his right wing looked different than his left wing.  This actually had special meaning to me, because my sweet little Luca’s right arm was different than his left. Because of his diagnosis, the radial bone in his right arm never grew properly.  It is difficult for me to talk about, but at the same time this little butterfly reminded me of those tiny little arms and sweet little fingers and toes. How I wish I could kiss them again!

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I had another happy moment this week when my cousin, Kristin, surprised me with a message that she and her two sweet little boys visited Luca’s grave.  This made me so happy!  It really warms my heart to know when Luca receives visitors, especially when it’s his two little buddies, Bodi and Bryson.  I bet Luca was smiling down on them!

I am so thankful for our family and friends who can visit his gravesite while we live so far away.  This year has really highlighted how far away we are from family and some days that can be really difficult for that reason.  To our family and friends in the U.S. – we miss you so much and wish you a Happy Thanksgiving!  And to our friends who are like family here in Okinawa, we are so grateful to have you in our lives and look forward to spending the holidays with you Okinawa-style. ❤

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Okinawa “fall” weather

Luca’s Story – Part 4 – Sharing the News & Receiving a Diagnosis

This past week was pretty good.  I was so happy after the Walk to Remember – it lifted my spirits for days.  Plus, my husband came home from a work trip, and it’s always easier to deal with everything when he is home.  However, the days leading up to the 5th of the month are always hard for me, since Luca passed away on the 4th of June and was born on the 5th.  I always become extra emotional on those days of each month and last week it hit me pretty hard.  There is really nothing that anyone can do or say to make those days better, except for just listening.  I am so thankful for my husband, mother, and best friends who just hugged me and listened to me while I endured those strong moments of pain.  I appreciate you more than you ever will know.

This week a year ago was also when I first found out I was pregnant, so that has been on my mind.  How we were so excited and a little scared too!  How life can change so much in a year.  On this day of my life though, I look back on this past year and I’m so grateful that I was able to enjoy most of my pregnancy with Luca.  I think about how he would be five months old now. Maybe he would be moving more and getting ready to crawl, making little noises at me, sitting up…  Would he be sleeping through the night?  Judging by his father, I think he would be a good sleeper!


Getting back to Luca’s story, I left off with the day I got the news that Luca would not survive and trying to find ways to not have to tell my husband before he got back home.  Later that morning, the day after we had received the tragic news about Luca, my mom and I headed back to the hospital for the testing they had scheduled for me.  I had to be there around 7 a.m. for an MRI, my first appointment.  After that, I was to have another ultrasound with a radiologist, and finally an amniocentesis.  All different techniques for the doctors to hopefully gain insight into what underlying condition might be causing Luca’s problems.  This would hopefully help us to prepare for what was to come.  I was still able to avoid my husband as he had boarded his last flight to get home to Okinawa.  I was so exhausted from not sleeping, the early wakeup, and mostly from the worry and grief repeating itself over and over in my head.  The medical staff administering the MRI were extremely nice.  I wondered if they knew about Luca – that my baby was going to die.  They were excited to hear about what it was like to live in Japan and commented on my very intricate Japanese pedicure as my toes stuck out of the end of the MRI machine.  I laid there letting the machine do its work, listening to the loud beeps for about 45 minutes.  I wondered if Luca was startled by them.  I worried about laying on my back for so long.  I let the tears flow down my cheeks as I thought about everything that had transpired in the last 24 hours.  I was still in so much disbelief.  They finished the MRI and I made my way back up to the Advanced Fetal Care Center where we had originally received Luca’s heart diagnosis.  I checked my phone and Joe had made it to Okinawa.  He was ten minutes from our house.  I told him I needed him to stay awake and I would call him in ten minutes.  I had to tell him.

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A gift from the hotel we stayed at, which was affiliated with the hospitals.

I asked my nurse, who was such a kindhearted woman, if it would be possible to have a private room to talk to my husband.  She said of course and led me down the hall to a room with a couch, a chair, and a full box of tissues.  The feeling came back to me that I had the day prior when the doctor told me the terrible news.  My chest was tightening and I felt like I couldn’t breathe.  How do you tell your husband – your best friend – the worst news of his life? Here he was just walking in the door after days of travel exhausted and by himself after being deployed in a war zone and now this?  I was so worried.  I didn’t want him to have to be alone.  I had never told him such an awful thing.  I had never told anyone such an awful thing.  And I couldn’t even be there to hug him or console each other.  I pressed the button to FaceTime him and he appeared on the screen.  He looked so tired, but happy to see me.  I remember him saying that he could only talk for a few minutes because he was falling asleep.  He had no idea.  I told him that things were not going well.  That the news was very bad.  The worst news ever.  Our baby was not going to make it.  Our son was going to die.  His heart could not be fixed.  Nothing could be fixed.  Like the conversations of the day prior, I can’t remember exactly what was said, just that I know I could feel the pain in my husband’s heart as I watched the news sink in.  I wanted to reach through the screen and hold him. Let him kiss my belly.  Just lay there and cry together.  To see each other in that much pain, the tears streaming down our faces, and not be able to do anything about it or even be together was excruciating.  I remember that the conversation was not too long, because really, what more could we say to each other?  I wanted him to be able to rest and I also had to get to my next appointment, so we said our goodbyes.

I returned to the waiting room and shortly after was called in for my next appointment.  A radiologist did another ultrasound for about an hour.  I was so mentally and physically exhausted and completely drained from the stress and tears that I fell asleep for the entire ultrasound.  My mom sat patiently next to me.  I can’t imagine her not being there.  She didn’t need to say anything to me, just her presence was comforting.  I woke up at one point, but they told me to go ahead and rest.

Those first two appointments were to look more closely at Luca’s little body – his bones, organs, and especially his brain – to see if the doctors could piece the puzzle together and understand what kind of condition he had.  I am not going to spend time writing about the many developmental issues that our son had, I don’t like to focus on what was wrong, and in the broader picture of his story it does not matter.  The doctors were successful that day in learning more about what was going on from those appointments, but if anything was going to tell us exactly what was wrong, it was going to be my last doctor’s appointment – the amniocentesis.

Baby Luca 29 weeks

Baby Luca 29 weeks

After the MRI and ultrasound at Boston Children’s Hospital, we made our way back over to Brigham and Women’s Hospital to the office where I had received the terrible news.  Just going in there made me feel nauseous.  My mom asked me if I wanted her to come with me into the room and I said no.  Looking back, I have no idea why I said no and I really wish I had asked her to come with me, because it was the worst appointment of the day.  I think in hindsight, I didn’t want her to have to see me in pain and wanted to give her a break from it all.  I also think I thought that since it would be a quick appointment, it wouldn’t be a big deal (yea right).  They put me in my room and I waited there alone for a little while.  I heard a soft knock on the door.  It was the sonographer from the day before.  She was the one who had called in the doctor who gave us the bad news, and who cried with me as if she was mourning my baby too.  She was young and beautiful with dark wavy hair, and she was so nice and compassionate.  She gave me a hug and said she would be thinking of me.  Next, two young nurses came in to do some initial prep work.  To be honest, these were the only people who I can’t say I liked in my whole experience in Boston.  They came in all chipper and with a smile on their face said, “How are you today??”  I wanted to slap them.  Are you kidding me?  My baby is going to die.  I’m f*&^ing awful.  Do not ask me how I’m doing today.  Luckily they didn’t stick around long, or if they did I don’t remember.  I recall from that appointment there being many people in the room – maybe four or five people?  The room seemed so crowded.  The doctor asked me if I was ready.  I was not.  I couldn’t stop crying.  I was so nervous.  They were about to put a giant needle through my belly and I was not ready for that and never would be.  They had one person doing an ultrasound to watch where baby Luca was and another person would insert the needle.  They had to take extra care to do this carefully and quickly and not get the needle too close to the baby.  I had to sign a form stating that I was okay with all of this, since there is a chance this could make me go into labor or harm the baby.  I felt like a terrible mother.  The actual procedure of the needle going into me took probably less than five minutes, but I was so shaken up and felt like my baby’s sacred and safe space in my belly had been utterly violated.

After it was over, I made sure that both clinics had my correct contact and insurance information.  I got copies of all of the records they had available, since I would have to take everything back to Japan and make sure that all of these bills were properly paid for while living 14 times zones away.  My mom and I headed to the train station and made our way home to CT.

When we got home, my stepdad opened the door and hugged me.  He is a man of few words and not someone who shows a lot of emotion.  I cried for a long time in his arms, then we went and sat on the couch.  He kept holding me and telling me how sorry and sad he was.  I don’t remember his exact words, just that I felt so comforted in that moment.  I was worried about what to tell my sisters who are 14 years old.  He said not to worry, that he had already told them, because it is important that they know.  They would be fine.

Later, I tried to reach my husband again, but got no answer.  It was about 12 hours since he had gone to bed, but I still could not reach him.  I was so worried about how he was doing processing all of this and being by himself.  I messaged two couples who we are very close with in Okinawa and told them the news and asked them to please take care of my husband until I could get home.  They said, of course, they would visit him and bring him food.  That made me feel better.

The next morning, I was finally able to reach him.  He had slept for something like 15+ hours.  (I shouldn’t have been shocked, I guess.  He does like his sleep!)  I think this was his way of dealing with everything, not to mention he was so jet lagged from his trip.

During that time, my emotions were changing every second.  They would change from sadness, to numbness, to anger.  Sometimes I just felt so angry.  I felt like I just hated everyone and everything.  Why did I have to suffer like this?  I wanted other people to have to suffer like we did.  I hesitate to even write that, but it’s the truth.  I don’t have those feelings of anger so much anymore, thankfully, but when I think about how I used to feel, it’s all very vivid.  That night I decided I wanted to take out my pain on someone, so I decided to call the woman from the military who wrote my husband the nasty denial email when we applied to be moved back to the U.S. for the sake of our son.  I knew it wouldn’t change a thing, but I didn’t care.  If my husband had been awake, I probably would have asked him if I should do this, and he would of said no, since he is the rational one, but I called.  The phone rang and she actually picked up.  I screamed at her more than I have ever yelled at anyone in my entire life.  She thought I was mad that we had been denied, but I angrily explained that it was her tone, lack of compassion, heartless words, and the fact that she didn’t seem to believe a bunch of Harvard doctors that was uncalled for – not the denial itself.  I knew she wasn’t really listening to me, but I didn’t care.  I cried and screamed that my baby was going to die and I hoped that she would think about that and the awful person she was every time she wrote any email to any family like ours.  I didn’t let her respond because I didn’t want to hear anything she had to say.  I hung up the phone and was shaking.  Looking back, I know I shouldn’t have done that and that some of my words were pretty harsh, but honestly I can’t say that I really regret it.

I was supposed to leave two days later for my friend’s wedding in Naples, Florida.  My mom was going to be my date.  I didn’t know what to do.  My husband told me to go.  I wasn’t sure that I could handle it and wanted so badly to be with my husband and catch an early flight back to Japan.  He told me to go and try to enjoy myself and relax.  My flight back to Okinawa was just a few days later, he said, so why don’t I just go and be with my friend who would be a source of support.  I called my friend, the bride, Allison, who is like a sister to me.  She told me to do whatever was best for me – no pressure – but that they would love to have me and maybe it would be good to get away and sit on a peaceful, warm beach for a few days?  I worried that my sadness and our situation would cast a shadow over her special day.  Without hesitation, she told me absolutely not and that she was there for me no matter what.  Friends are there for each other during the good AND the bad.  If I needed to skip out on parts of the wedding weekend, it was no problem.  I appreciated everything she said, thought about it, and decided to go.

I talked to my husband a lot those next couple of days.  We decided we had to pick a name for our baby. Initially, we were not going to tell anyone the name until he was born, but I felt a sense of urgency with the diagnosis – that we had to decide on his name and tell the world.  I wanted people to refer to him by his name, because he was a person, not just a baby that wouldn’t survive.  We hadn’t chosen a name, but Luca Gabriel was a top contender and we decided that would be his name.  We initially  picked Luca because we just liked it; however, when I researched the name, I knew it was perfect.  Luca is the Italian version of Luke (my husband’s family is Italian) and St. Luke was the patron saint of physicians and doctors. Our Luca had been cared for by so many wonderful doctors, so I felt it was fitting for him to have a name of someone who watched over those wonderful people who had helped us so much.  We gave him his middle name, Gabriel, after the archangel Gabriel, since he would be our angel always. Gabriel also means “God is my strength” and as a family, we needed to remind ourselves of that every day.

The day before I left for the wedding, the geneticist called me.  After the amniocentesis in Boston, she had told me that the majority of the findings from the amnio would take several weeks to get back.  She said that some results might be available within about 48 hours, but maybe not.  She also said that after all of my testing, we might not ever find out what Luca had.  I wasn’t expecting to get any real news until I got back to Japan.  When I picked up the phone, she said that the initial results had come back 99.9% positive for Trisomy 18, or Edwards Syndrome, a chromosomal abnormality.  This meant that he had an extra whole chromosome 18 – three had replicated instead of two.  She also said that this did not come from me or my husband.  It was a random occurrence.  A lightning strike.  Really bad luck.  She said she was so sorry.  It’s hard to describe how I felt during that conversation.  I was relieved that they had figured out what it was.  I was devastated that this was just more proof that he would not make it.  I was relieved that it wasn’t genetic, but it was all impossible for me to understand how something like this could just happen randomly.  I kept the diagnosis private for awhile, because in my heart I could not help believe that this was somehow my fault.  I didn’t want others to think that too.


Today, I went on a walk with my friend.  The most beautiful butterfly followed us for awhile and brought a smile to my face.

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It was so nice to chat with my friend.  I got to show her Luca’s room and his picture, which always makes me a proud mama!

I’ve realized recently that helping others through their own hard times really has helped me a lot.  In the beginning, I couldn’t worry about anyone but myself and just trying to get through each day.  I’m glad that now that I’m feeling better I’m able to start being there for others like they have done for me.

My husband and I are soon going on vacation for the first time since Luca was born.  It will be nice to explore a new place and just relax and be with each other.  He is the one person who helps me get through all of this the most.  As always, we thank you so much for reading about Luca and our journey. ❤

Walking to Remember Luca

I’m going to take a little break from Luca’s story for today to tell you about my wonderful weekend!  First off, if your weekend starts with a baby elephant, then you know it will be a good one!

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On Friday, my friend who is a zoologist took me to the Okinawa Zoo and we got to pet and feed a mommy and baby elephant!  It was so amazing!  The baby’s name was Ruby and she was absolutely the sweetest thing ever!  My friend had her son with her who is just a few months old and Ruby was so interested in him – it was adorable to watch.  Ruby was very eager to interact with us… until the zookeeper put on her Halloween costume and she became very shy and embarrassed and hid under her mommy!

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Elephants just seem like such intelligent, emotional, and gentle animals.  It was so special to interact with them.  That morning I had been in a terrible mood.  I felt really sad and anxious, and was really missing my son.  Seeing the animals and having that time with Ruby was so calming and really therapeutic.  I’m so thankful to my friends for including me in this special outing!

The next morning on October 31st, I participated in the 7th annual Walk to Remember at Torii Station here in Okinawa. The event was hosted by the U.S. Naval Hospital Okinawa (USNHO), the Okinawa Nurses Association, and the Angel Babies neonatal loss support group.  The Walk to Remember is typically held in the month of October, since October is Pregnancy and Infant Loss Awareness Month.  Many of these walks or vigils take place across the U.S. throughout October, so I am glad that I will hopefully be able to continue this tradition wherever the military sends us.  I had been helping some of the USNHO staff plan this for weeks through the Angel Babies support group that we are a part of and looked forward to having this special event to honor Luca and all of the other beautiful babies who have been lost.  A week prior, I posted the event info to my Facebook page to see if any of my friends might want to join me.  My husband was away for work and unfortunately would not be able to come to the walk.  I was a little anxious at the thought of going by myself.  I wasn’t really sure about posting it, because my friends have already done so much for us and I didn’t want them to feel obligated or uncomfortable at the thought of going.  The response was overwhelming – I seriously have the best friends in the world!

The morning started out with a service at the chapel on Torii Station.  It was so good to have my friends beside me and also to see the familiar faces of the hospital staff who helped to deliver Luca.  I read the following poem, “Gone from My Site” by Henry Van Dyke, which has been very comforting to me:

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, “There, she is gone.”

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.
Her diminished size is in me — not in her.

And, just at the moment when someone says, “There, she is gone,”
there are other eyes watching her coming, and other voices
ready to take up the glad shout, “Here she comes!”

And that is dying…

After reading the poem, I took a minute to thank the USNHO staff who had helped us plan for Luca’s birthday and who were there to deliver him.  The Walk to Remember was not only for the families who had lost babies, but also for these medical staff members who help families every day – whether that is trying to save a baby’s life, help someone through a miscarriage, deliver a stillborn baby, or a healthy baby.  They are there for the good and the very bad and they grieve for these babies too.  Because of their care, compassion, and professionalism, my husband and I can remember the day we had Luca as the best day of our lives.  Even though it was also incredibly sad, these doctors and nurses made sure we had everything we needed to be comfortable and enjoy that peaceful time with our son to the very fullest.  I will spend more time in future posts talking about these special people, but I can never ever thank them enough for what they did for our family.

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Towards the end of the ceremony, we lit candles in remembrance of our babies.

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Then, everyone gathered to write messages on balloons and we walked down to the beach.

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My friend Randee made me this amazing shirt for the walk, and my friend Erin made everyone beautiful stickers to wear, so everyone knew that we were walking for Luca – so thoughtful!  When we reached Torii Beach, we had a moment of prayer and then released our balloons into the sky.  It was so peaceful to watch them slowly float away into the clouds.  I pray that Luca received all of our messages – that we all love him so much!

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My midwife and nurse who delivered Luca :)

My midwife and nurse who delivered Luca 🙂

Team Luca!

Team Luca!

After the balloon release, we enjoyed a picnic lunch.  All in all it was a great day.  I was so happy to have time to chat with the few people who met our son in person – our midwife, nurse, and chaplain were all at the event.  There are very few people who actually got to see my baby and hold him.  It is incredibly comforting to see those people again who understand how beautiful and peaceful our day was with Luca.  They were there to help us care for him, dress him, sing him happy birthday… they helped us to give him a bath and prayed with us… those are all priceless gifts that will last a lifetime in our hearts.

And again, I cannot thank my friends enough for joining me on such a special day, and my friends and family who I know wanted to be there, but couldn’t – you were there in spirit!  I can only hope that I can be half as good of a friend as they have been to me.  We live thousands of miles away from our families (7602 miles to be exact!), yet it is hard to feel lonely here among our “Okinawa family.”  Everyone truly supports each other and I believe that the steps forward that I have made in this grief journey are largely thanks to these wonderful people in my life who have patiently walked beside me.

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We love you, Luca!

Luca’s Story – Part 3 – A Broken Heart

I’ve been putting off writing this post because it is the hardest for me.  I had to stop many times, because writing this truly brings back the worst moments of my life.  Reading this part of our story might not be for everyone.  It is the most heart wrenching for me to remember and to tell.  Maybe you are pregnant and reading this augments the fears that you face during your pregnancy.  Maybe you lost a child of your own or a close friend or family member and this brings back your own grief and difficult memories.  Believe me, I get it.  I’ve learned that you have to take care of YOU before you can take care of anyone else, and that sometimes while you want to help someone else through their suffering, you may just need to take a step back and do what is healthiest and best for you.  After losing my son, I’ve realized that I have to be careful with what and who I surround myself with as I work through my grief.

But I also want you to know that while this is sad, this is all part of Luca’s life, and his memory is what makes me happy.  In the midst of my joy for him lies very deep sorrow.  But, I am so very lucky that God chose me to be his mom and I would not change a thing, because I love him for the exact little person that he was.  Because of my experiences facing this loss, I feel that I can truly appreciate happiness. They say that after a storm, comes a rainbow.  This chapter of our story, for me, is the worst of the storm, but after that storm came a beautiful rainbow- our son.

Continuing our story from Part 1 and Part 2, my mom and I returned to CT from Boston feeling heavy with sadness for my grandfather who had passed just days prior, and feeling terrified for the path ahead – our uphill battle to fight for Luca’s survival.  I spoke to my husband again the next day and he had spoken with his commanders who were working their hardest to get him home to Japan ASAP.  This was a huge relief, because it’s not an easy thing to leave a deployment early.  Not to mention, I couldn’t handle the stress of worrying about both my husband’s safety carrying out his deployed missions and my baby’s health issues too.  It was extremely difficult to talk to my husband based on his erratic work schedule, the time difference, and the spotty internet connection that we used to Skype or FaceTime.  Our conversations became more like business meetings.  We channeled our sadness into productivity in order to figure out our plans for the near future.  I would have to have Luca in the U.S., since only a handful of hospitals in the U.S. could handle the very specific surgery he required. So many questions had to be answered.  How long would I stay with my parents?  When would I move to Boston to be near the hospital?  Where would I stay?  How much would that cost?  Were there any programs to help with that cost?  When would my husband come to the U.S. to make sure he could be there for the delivery?  How much time off would the military give him?  Can we emergency PCS (PCS means when you move in the military)?  How do we begin that process? The stress was unbelievable.  I remember my mom trying to cheer me up with a shopping trip a few days after we got back from the hospital.  Instead of shopping (not that I could fit into anything at that point anyway!!!), I sat in the comfy chairs in the store with a mountain of paperwork trying to call my husband back five times, because that was the only time he could talk to me and we had so many things we had to discuss.  We kept on getting disconnected since his internet was so terrible.  Between his time zone, mine, and Japan (where all of our paperwork was being processed) it was very complicated. I carried my medical documents and military paperwork with me at all times, because I never knew when he might call me, so I had to be ready.  I would get so anxious and overwhelmed as we talked about everything.  My husband did his best to keep me calm as he handled his own stress, but it was a tense time for our marriage.

By the end of that week, we had managed to submit the necessary paperwork to ask the military to emergency PCS us to a location closer to Boston, or at least somewhere in the U.S. with access to a hospital that could handle Luca’s care.  That weekend, my family and friends threw a beautiful baby shower, which was one of the reasons I had flown home at that time.  While it was so wonderful to see everyone and such a happy occasion, I was so preoccupied with everything.  As I opened gifts, I thought about how I didn’t even know if my son would survive to be able to wear the tiny baby clothes that I received.  If he did make it, for the first few months of his life, he couldn’t even wear clothing because he would be hooked up to so many tubes and monitors.  I told my family and close friends the news that day and we all cried together.  Everyone was so supportive, but there was so much that was unknown.  Some said, “It will be okay!” and I honestly didn’t know if it would be okay.  That evening, my close family gathered together to have a small memorial for my grandfather.  It made me feel more at ease when I thought about him.  I knew he was watching over Luca.

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The next week came and went and I was feeling much better as our next Boston appointments approached.  The bad news had begun to sink in and while I was still super stressed, I had a more positive outlook and was able to tell myself that Luca would be okay and believe it.  If his mommy and daddy could stay strong for him, then he would be strong too and everything would be okay.  I didn’t want to let my stress take a toll on my baby.  My doctors said that while I was considered high risk, Luca was perfectly safe in my belly and I could do everything as usual.  Whenever he decided to arrive would be when his heart would have to work on its own and the problems would start.  I went to the gym most days, took naps, and did all I could to take care of myself.

My husband began to make his way back to Japan from his deployed location a couple of days before I left for my next Boston visit.  He had several days of travel ahead of him as he had to take a very lengthy, convoluted route on both military and commercial flights to get back.  Simultaneously, my mom and I departed for Boston on May 4th to be there for all of my appointments on May 5th.

29 weeks pregnant - the day we left for Boston

29 weeks pregnant – the day we left for Boston

As I’m starting to write about this day, I feel physically sick.  My chest is tight and I feel like my heart might explode.  It is not a day that I wish to remember.  On May 5th, we arrived to my first appointment at the Advanced Fetal Care Center at Boston Children’s.  I felt really good about the appointment.  The news had sunk in for two weeks and I was ready to learn more about what we had to do to fight for Luca’s life.  I began my second fetal echocardiogram (same as the last time) so that the doctors could hopefully get more images of Luca’s heart that would be helpful for them to plan his first surgery.  After, we sat down again with our doctor and learned more about everything we should expect moving forward.  Surgeries, complications, expectations, and more.  Afterwards, my mom and I grabbed some lunch and headed over to the adjacent hospital, Brigham and Women’s, to have a regular ultrasound and pregnancy checkup, and to meet my new doctors who would be helping to deliver Luca.  I was excited and relieved to be having a regular appointment where I could see my baby and focus on how beautiful he was and not hear so much about what was wrong with his heart.  We arrived at the Maternal Fetal Care Center (for high-risk pregnancies) and waited.  I talked to my husband a few minutes before I was called in and we shared our happiness and excitement.  We were both feeling positive after the first appointment.  He was boarding a 12-hour flight to Tokyo, so I wouldn’t get to speak to him until the next day.  We said our goodbyes and I was called in.  A sonographer began my ultrasound and there was my baby!  It was my first 4D ultrasound and it was INCREDIBLE!  I could see his little facial features – his tiny little lips and nose and fingers!  My heart was bursting with love – he was so perfect!  She said “Yes, he’s definitely a boy!”  I also remember her saying “Wow, he has some very nice living quarters” and that it was very roomy for him, because there was a good amount of amniotic fluid surrounding him.  I figured that was a positive thing… sounded positive to me, right?  She continued with the ultrasound and I was beginning to get annoyed because I had another appointment across the hall that I had to get to in five minutes. What more did they have to see?  My baby and I have been put through so much testing already, haven’t they seen all this already??  I asked her if everything was okay.  She said, “I’m just putting everything into the computer and the computer measures everything.”  Then she said, “I’m just going to go get the doctor.  I’ll be right back.”  I was never supposed to see a doctor at that appointment – why was she getting the doctor?  I started to worry a little, but not that much.  Maybe this was just part of the appointment?

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A doctor I had never seen and wasn’t scheduled to see entered the room.  I don’t remember her name, but remember her being very serious.  She looked at the ultrasound again.  It seemed like she took an eternity.  I was getting angry.  What more do you have to look at?  My heart was starting to beat faster.  I said, “Is there something wrong?  Please tell me what is wrong!”  She stopped and took a deep breath and said, “I’m so sorry, but your baby has many more problems other than his heart.  He will not survive.”  I could not even comprehend what she had said.  I honestly don’t even remember what I said after that.  I just remember that I truly felt like I was going to have a heart attack.  I couldn’t breathe or speak.  My mother was with me, but honestly I don’t remember who or what was around me at that point. I do remember the sonographer was crying too.  It felt like the world was going dark and closing in on me.  They rushed me to another room to take my blood pressure, which was through the roof.  I was hysterical and inconsolable.  One thing I will never forget is as I sat there, I could hear another woman in a room nearby screaming and wailing.  I knew she had been given the same news.  I thought to myself, God, how could this be?  What did I do?  How can this really be real?  I wanted my husband and I wouldn’t be able to talk to him until the next day.  A nurse brought us to a private waiting area where we waited to be seen by other doctors.  We were called in to speak with a geneticist/OBGYN and the Director of Maternal Fetal Medicine.  They told me a very long list of all of the physical problems that they observed on the ultrasound.  It just seemed unbelievable.  My baby looked fine to me!  They said, “Your baby most likely has a chromosomal abnormality.  We do not know what it is, but we know that he cannot survive.”  Again, this time is very blurred to me now.  It’s hard to remember the specifics, but I will never forget the stabbing pain in my heart.  I do remember asking over and over again, “What do I do?  Tell me what to do?  I don’t know what to do!” Then the geneticist said, “Many women would choose to terminate their pregnancy.”  I did know that was not an option for me.  Were they serious?  I was 29 weeks!  And even if I was not that far along, this was my son!  I can feel him move!  I know his personality!  This is my baby!  I said no.  I would not do that.  Tell me another option.  They said I could carry him as long as I could.  He might not make it to his birthday and if he did, he would likely survive minutes, hours, days at the most.  We could offer him “comfort care” – keep him comfortable until he passed away.  I said that was what I would do.

The doctors knew that I had come all the way from Japan to Boston for these visits, so they said they would schedule me the next day for more testing.  We wanted to try to find out exactly what kind of chromosomal condition Luca had, so that hopefully we would know more about what to expect and be able to prepare as much as possible.  We also wanted to know if this was genetic or not.  The doctors scrambled to set up an MRI, another ultrasound, and finally an amniocentesis for the next day.  My mom frantically called to postpone our train tickets home and find a hotel since ours was booked for that night.

We met once again with my first doctor, the pediatric cardiologist from Boston Children’s.  He could not believe what had transpired.  He hugged me and told me over and over how sorry he was.  Many of the doctors I saw that day had tears in their eyes.  I will say that I am thankful for all of those doctors.  I am thankful that I was at some of the best hospitals in the world where they could see the problem and tell me immediately what was going on.  They explained my options and patiently answered my questions without pushing me in any one direction.  There is no good way to tell someone that their baby is going to die; however, they were professional, compassionate, and direct and I thank them for that.

That night I didn’t say much.  I couldn’t think or speak or eat.  I definitely couldn’t sleep.  I just kept thinking about my baby.  I told him over and over I loved him.  I prayed so hard to God.  To please help me.  Please tell me what to do?  I would drift off to sleep for a little at a time, then wake up and be horrified at the nightmare which was now my life.  It was like having to relive what that doctor told me over and over again.

My husband texted me around 4am.  He had landed in Tokyo and was waiting for his next flight to Okinawa.  He asked how the appointments were?  How was our baby??  He was eager to know everything and talk to me.  He also said he had heard back from the military regarding our request for an emergency move.  We were flatly denied because the military said that the issues were “only speculative at best at this time” and there “was no viable patient on which to report” since our baby was not born.  He was furious.  I would have been too, except that none of that mattered anymore.  I was obviously awake, but I could not bear to tell him the truth while he was exhausted and sitting in an airport by himself.  Actually, I didn’t know how I could ever tell the man I love that his son would not survive.  I told him not to worry about that for now and “let’s talk about that later.”  I lied and said that I was fine, but too sleepy to talk and we were unable to finish the appointments they wanted me to have, so I just had to go back to the hospital the next day and I would talk to him in the morning when he got back home to Okinawa.  I told him, yes, we are having a boy and sent him pictures of the ultrasounds. Thankfully he seemed satisfied with that response and I went back to sleep.

Again, I will pause at this point.  For me, this was the absolute most painful part of my journey.  My dreams of having my son were completely shattered.  I have heard, “At least you’re young.”  That is not at all helpful.  I don’t want A baby, I want THIS baby.  If you have lost someone unexpectedly in your life, then perhaps you can imagine this sort of pain.  For me this was a turning point.  I realized that nothing else matters.  All of the little things we complain about don’t matter.  The people who you love do.  My baby was still alive and I was going to make sure that he knew how much we loved him and cherish every moment we had with him.  I realized that I was not in control and could not fix this, only God could determine the future.  I prayed that whatever the outcome, Luca would not suffer.  And that he would know how much we love him and how much we wanted him.

This past weekend, we had great weather here in Okinawa. I went down to the seawall about five minutes from my house to sit and think about Luca.  Being near the ocean always helps me feel calmer and close to God.

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When I was on my way home, two friends texted me that they were thinking of Luca because they saw rainbows!  It was certainly rainbow weather outside, so I looked around frantically for one.  Since Luca was born, I have seen SO many rainbows and they always remind me of him.  I prayed to God to please show me a sign that Luca is okay and happy and a very faint rainbow appeared right then!

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It quickly disappeared after just seconds and I thought, please come back!!!  I looked down for a second and then looked up and saw THIS!

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It was the most vivid, beautiful (double!) rainbow I had ever seen! Right in front of me!  The picture does not do it justice.  It made me so happy!  Here is another photo that my friend took from a different angle – she saw it at the same moment!

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On top of all of these rainbows, I was taking a walk the next day and saw a butterfly.  I put my finger out and it landed on my finger!  To me, these are all small moments of peace, when I am reassured that Luca is okay and I will be okay. I am no expert on how God communicates, but I see these moments as incredible gifts that bring me much lasting joy.  These days, I take more time to myself, and to appreciate my family, friendships, and surroundings.  Luca has changed my life in so many ways and I give thanks for all he has taught me.

You, Lord, keep my lamp burning; my God turns my darkness into light. ~Psalm 18:28

Luca’s Story – Part 2 – Something is Not Right

A few days ago, I was at the gym and saw a woman I recognized, but couldn’t remember how.  I heard her mention that she was going to “go light” because she had a baby in May and was still getting back to working out.  I then realized that we had worked out together a few times while pregnant.  (Actually, I think the last time I saw her she was pumping out pull-ups while prego – badass!)  I told her that I had had a baby too, just a month after her, and was getting back to working out as well.  She was so friendly and asked about my baby.  It felt refreshing just to chat like a regular mom for once.  I told her I had a little boy and his name was Luca.  I knew that this could become awkward if we continued this conversation, but I selfishly went on because I wanted to talk about Luca.  I was excited that I could talk about my baby.  Finally, she said, “He must be getting to such a fun age now!”  My heart stopped.  After pausing, I replied, “I’m sorry to tell you this, but my baby actually passed away.  But, it’s okay, because you really made my day by allowing me to talk about him.  So, thank you.”  She was obviously shocked, but she looked at me and said she was so glad that I could be with him for the brief time he was here on earth.  It meant so much to me that she was willing to talk to me and hear about him and not run from the conversation.  So many people are just horrified when they find out what happened, have no idea what to say, and end the conversation quickly and walk away.  I appreciate anyone who is willing to let themselves be uncomfortable for a few minutes and listen to me talk about my son, because the discomfort I feel is for a lifetime.


At 25 weeks, we went to our doctor for our last checkup before my husband was to deploy a few days later.  In the U.S. (or at least at the military hospital here), most pregnant women have a big ultrasound around 20 weeks (the anatomy scan, of course!); however, our Japanese clinic does a comprehensive ultrasound around 25 weeks.  We were very excited to hopefully find out the gender before my husband had to leave for awhile.  The subject of gender during my pregnancy was always kind of funny (and frustrating) because my doctor NEVER wanted to give me a straight answer.  She always said, “Maybe boy!”  This frustrated me to no end, since I am such a planner and needed to know!!!  I needed to pick out nursery colors!!! Come on!!!  My husband would always fight back his laughter when Dr. Fumi answered.  One time I asked her, “Well, when will we know for sure?”  She answered, “The day of the birth!”  When talking to my Japanese friends and those who knew Dr. Fumi, they said that this is what she always said, most likely because she did not want to take the chance of being wrong… and that even if she said “maybe,” it meant that she was pretty sure.  Another Japanese friend told me that when she was pregnant years ago, she asked to find out about the gender, but the doctor refused, saying that it was basically disrespectful to the baby’s spirit to be asking that question before the birth.  So interesting, yet so frustrating!

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Out exploring at 24 weeks

Our appointment was going well. We saw our midwives first, and then were eventually called for our ultrasound with Dr. Fumi.  Honestly, the only thing on my mind was excitement and seeing our baby on the ultrasound and hopefully confirming the gender.  Dr. Fumi was always very quiet and serious about her work, so it was not alarming when she acted that way and took a long time scanning me, particularly since this was scheduled to be a longer ultrasound.  I’m no doctor and barely ever knew what I was looking at on the screen, but after some time it occurred to me that she was spending a very long time looking at his heart.  I asked her if everything was okay – fully expecting her to say yes.  After a very long pause, she said, “I think there is an abnormality with baby’s heart.”  My own heart stopped and I felt like all of the blood was draining from my body.  I do not remember what I said next, but that I was crying and felt like I was having a panic attack.  Dr. Fumi said, “I want you to see a pediatric cardiologist.”  She told me not to worry and that she didn’t know for sure that something was wrong, but she wanted to check and be on the safe side.  So many things were running through my mind.  I had no idea how serious the problem could be.  My husband was leaving in just a few days.  I was leaving to go visit our families in the U.S. a few days after that.  I told all of this to Dr. Fumi.  She said, “If I were you, I would go see a doctor in the U.S.”  Okinawa is a very tiny island.  There is only one pediatric cardiologist on island and she is Japanese.  I only had three business days to try to get in and see her and naturally she was extremely busy.  Dr. Fumi tried her best to get me an appointment and she told me the doctor agreed to see me a few days later on her lunch hour, because that was the only time she had available. However, my translators were not available at that time and the big hospital I would be going to was all Japanese.  I spent an entire day frantically trying to find someone to come with me and translate and finally a friend said she could come with me.  That night, my husband and I went out to dinner with some friends and I got a call from Dr. Fumi in the middle of dinner saying that she was sorry, but the cardiologist cancelled my appointment, because they were not confident that my American military health insurance would pay the bill.  I was devastated, but there was nothing I could do.  I didn’t have time to fight it. We immediately went to plan B, which was to see a doctor in the U.S.  My parents had already been working on setting up that appointment and through family connections and the grace of God, we had an appointment a week and a half later at Boston Children’s Hospital – the number one ranked children’s hospital in the U.S., and specifically, the number one pediatric cardiac and cardiac surgical center in the U.S. While this was great news, a week and a half seemed like an absolute eternity for me.  I needed to know NOW if something was really wrong, but we had to wait.

I spent those last few days before my trip to the U.S. gathering my medical records and my doctor was able to translate her suspected diagnosis into English.  I read her note and it said “hypoplastic left heart syndrome” (HLHS).  My husband begged me to stop reading online.  He tried to convince me to not worry because we didn’t know anything for sure yet, but I couldn’t help myself.  When I researched, it said that HLHS was rare and the most serious of congenital heart defects, requiring multiple surgeries just after birth.  I tried not to think about it, but I was so worried. It was “rare,” so it couldn’t possibly happen to us.  Meanwhile, my friends were asking me how the appointment was… what was my nursery theme… did we find out the gender yet?  I wanted to scream.  None of that mattered anymore.  I just wanted a healthy baby.

That weekend, my husband deployed.  We really had no other option.  We did not have proof that anything was wrong with our baby and we doubted that someone could replace him just days before a deployment.  It was one of the hardest goodbyes I’ve ever had with him.  I packed and a few days later flew to New York City.  My sisters and mom met me there and we spent the weekend shopping and sightseeing.  They wanted so badly to cheer me up, but I was always worrying in the back of my mind.  It was beautiful cool spring weather and it did help to have that time with them when I couldn’t be with my husband.

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My grandfather was not well at the time, so I was glad to arrive to Connecticut and visit him finally.  He was 92 years old and the most wonderful, happy, uplifting person in my life.  He has always been so special to me and even walked me down the aisle on my wedding day.  I was so glad to see him, but also shocked because I had not realized how sick he truly was until I got home.  Cancer had taken over his body, and my family hadn’t wanted to tell me how bad his health was, since it had happened when I was dealing with my own bad news.  When I finally saw him, we had the most wonderful visit.  His mind was as sharp as ever and he was so excited to see my big belly and know he would be a great grandfather.  He said he wanted his great grandson to call him “G-G” – short for great grandfather.  So cute.  My husband was even able to FaceTime us and say hello.  I kissed him goodbye and said I would be back soon.  I was looking forward to spending a lot of time with him during my visit.  Less than two days later he passed away peacefully.  I was so sad, but also thanked God for giving me one last opportunity to spend time with him.  My mom said that before I arrived, he would ask her nearly every day, “When is Jessi arriving?”  My other family members had flown to CT to see him too.  He waited for everyone to get there to see him and then passed away right after.  He had a long life filled with love and I am so blessed to have him as my grandfather.  I miss him every day and know that he would have been a tremendous source of comfort to me during this time as he lost his own young son.  It makes me happy to imagine him with Luca now… reading him Dr. Seuss books, of course! 🙂

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The day after my grandfather passed away I headed to Boston for my appointment.  My amazing mother came with me.  She was already dealing with the passing of her father, not to mention my sisters were in school, but she insisted on going with me.  We took the train two hours to Boston and I was both nervous and a little bit relieved that finally I could get some answers. I would try to convince myself that everything was fine and this was probably all a mistake.  Dr. Fumi was just being conservative and the Boston doctors would say, “Your baby is fine!”  I prayed and prayed.  I rubbed my belly and told my baby I loved him and that we would be okay.  We checked into a hotel that night and the next morning called our minister and prayed with him before heading to the hospital.

When we arrived, I could not believe how enormous the hospital was.  At first glance, I probably saw 20 different nationalities – people who had traveled from across the world, like me, to come here.  My appointment was at the Advanced Fetal Care Center.  I was scheduled for a 90 minute fetal echocardiogram – basically an ultrasound where they can zoom in on the baby’s heart.  They take (what seemed like) a thousand images from different angles to see every possible view of baby’s heart.  They were so nice and put me at ease chatting with me and asking about the baby.  It also involved some waiting as Luca was not always cooperative.  At one point, he actually put his hand over his heart – not helpful!  My patriotic little baby!  My husband was texting when he could to see if we had any updates.  As they were finishing, I asked them what they thought.  The doctor told me he believed my baby had some variant of HLHS, but that another doctor would meet with us shortly to discuss everything after he looked through the images some more.  I was devastated and began to cry, but tried to keep it together.  I knew from my research that this was survivable and that I had to be strong for my baby and for my husband who was so far away.  I didn’t want him to worry about me more than he already was.  The doctor came in and after multiple attempts we were able to get my husband on the phone from his deployed location.  He began to explain to us what was wrong with our baby’s heart.

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He drew pictures on a white board of the heart and explained that our baby’s condition was extremely serious, but that we were in the best possible place to treat him.  Our baby had single ventricle heart disease and a HLHS variant.  Really no heart is the same as another, so it’s hard to fit these diagnoses into one name or definition.  It’s difficult to remember all of the details of the conversation now, but I remember him saying that there were something like eight pediatric cardiologists at Boston Children’s and over the course of the rest of my pregnancy, they would continue to look at baby’s heart and determine the best course of action, which included determining which cardiologist was the best match to operate on our baby based on their particular area of expertise.  It simply blew my mind to listen to these doctors explain the ins and out of a tiny baby’s little heart the size of a grape.  It was so far above my head, yet I felt very confident that they would take care of us.  The doctor said that it would not just be him taking care of our son, it would be an entire “village” of people between the two hospitals: Boston Children’s and Brigham and Women’s Hospital next door.  He said we would get to know them all very well and we would all be a team together.  I would have the baby at Brigham and Women’s and then we would be transferred to Boston Children’s shortly after for the surgery and six to eight weeks of recovery.  He was also very real with us about the facts – one third of babies with this heart problem do not survive to see their third birthday.  At least three open heart surgeries were required during the first two years of life, the first one occurring just days after birth.

After some time, my husband had to get off the phone and go to work.  My mom and I continued to ask questions, but the doctor told us it was best to take a break and let all of this sink in.  He didn’t want to overwhelm us with too much information in one day, because it was a lot to handle.  We agreed and scheduled another appointment two weeks later for more testing and for me to meet my doctors at the adjacent hospital.  That afternoon we headed home to CT.


I have to pause as I tell Luca’s story because it is an emotional one to tell and cannot be told in one post.  If you have read this far, thank you.  It is impossible tell his story in few words, because so much happened during his little life, so I will take my time and continue as i can.  As I write, the emotions from those days come back to me.  But, it is very healing and I truly hope that perhaps Luca’s story will reach someone else going through something similar and let them know that they are not alone.

I’ve really felt Luca’s presence over the past two days.  It makes me so happy to feel him with me, but so sad that I cannot actually be with him.  Yesterday, it was while practicing yoga overlooking a beautiful sunset and a calm ocean.  Today, it was while watching a butterfly while I took a walk.

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I need to have that quiet time to be with myself every day or as often as possible.  It is then that I am reminded that Luca is with me and God is with me and I will be okay.

I call on the Lord in my distress and He answers me. ~Psalm 120:1

Luca’s Story – Part 1 – Pregnancy in Japan

Overall, this past week has been a good one.  I am overwhelmed by the positive and compassionate responses I received from my first blog post. Thank you! Knowing that we have that continuous support from so many people really helps me to keep moving forward and I appreciate it so much.

My mom sent me this picture too and it made me so happy to know that Luca is being taken care of and that he is ready for fall!  I love his fall decor!

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Our mothers and other family members have been great, visiting him when they can, and making sure his gravesite is always looking beautiful.

But there are moments that are still so hard.  Last night, I was watching TV and someone found out their mother had died on the show.  The woman was screaming and crying.  That scene reminded me of the moment that a doctor told me that Luca would not live… the worst moment of my life.  There will always be those triggers for me, but I get through them, especially thanks to my husband.  Thinking about that moment made me want to tell Luca’s story from the beginning, which I will do over the course of the next several posts.

We decided we wanted to start trying for a baby when my husband returned from his deployment in the fall of 2014.  I got pregnant right away and felt so fortunate for that.  Being my first pregnancy, everything was new to me.  I was used to feeling great and staying super active, but those first 12 weeks I had NEVER felt so tired in my entire life!  Overall though, it started out as a fairly uneventful pregnancy.  I felt sick, but not terribly sick, and managed to keep up my gym routine and eating relatively healthy – goals of mine.  We busied ourselves with planning how to tell our families the happy news, finding the perfect doula, and deciding where to have our baby.  I worried about all the little things like stretch marks, taking the right vitamins, eating the right foods, gaining only the proper amount of weight, and getting past that 12-week mark when everything would be magically fine and our baby would be deemed safe and healthy.

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Baby Luca at 9 weeks!

For our first two appointments (9 and 12 weeks), we went to the U.S. Naval Hospital here on Okinawa.  We saw our little nugget for the first time and it was absolutely incredible!  I cried and couldn’t believe a tiny little human was growing inside of me.  After that, we decided to switch to a Japanese birth center outside of the military healthcare system.  Japan is known to have some of the very best maternal and infant care and we had heard amazing things about Yui Clinic.  Living in Japan is a once in a lifetime opportunity and we want to take advantage of everything this country has to offer. It was a goal of mine to try my very best for an all natural birth and Yui Clinic is most supportive of that.  I could spend many blog posts talking about my experiences going to a Japanese doctor, but for now, I will share some of the highlights.

We quickly learned that these doctor appointments would be much different than going to an OBGYN in the U.S.!  I would say each appointment was two to three hours.  We brought either Kyoko-San or Asako-San with us to translate.  My doctor at Yui spoke great English and it wasn’t mandatory to have a translator, but it was nice to have Kyoko-San or Asako-San with us, just in case we had any communication problems (most of the midwives and other staff spoke little or no English).

Yui Clinic also gives every mom their own pregnancy guidebook.  Now, I got a pregnancy guide book from the military hospital, but this Japanese one was SO much better and more interesting!  It talks about everything from nutrition to breastfeeding to kick counts, and even includes some cute little cartoon tutorials, poetry for meditation, and more. 🙂

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After checking in and taking my vitals, we would first see a midwife.  During that portion of the appointment, she would assess my overall health and we would talk about how I was feeling and any questions that we had.  Here are some of the highlights of the appointments with my midwives:

  • Diet – Japanese doctors are MUCH more concerned with weight gain and the quality of what you are eating.  They had me keep a food log for a week or so and we discussed how to have a balanced diet according to their recommendations.  Their guidelines included eating seasonal food, tofu, cooked beans, fish, lots of seaweed, and consuming warm liquids like warm/hot water, soups, etc. to keep my body warm, which is good for baby.  Since Japanese people do not traditionally have a lot of dairy, they get their calcium from soy bean products, small fishes, dried shrimp, and other traditional sources (I stuck with the yogurt and cheese!).  The guidebook that they gave me actually says “white sugar is poison” – they really say it like it is when it comes to health here in Japan!  The guide also agreed with the no raw meat rule we Americans have, but that did not include fish or eggs.
  • Exercise – I was worried that maybe they would think I exercise too much, but my doctor and midwives were always thrilled to hear that I worked out regularly and encouraged that.
  • Communicating with Baby – One appointment, they spent over 30 minutes talking to us about the importance of talking to our baby, and in particular, my husband talking to our baby.  They suggested that if he was uncomfortable or didn’t know how to start, then he should read books to our baby.  How awesome!  Here is a page from my Japanese pregnancy guide with suggestions: IMG_0774
  • Staying Warm – They would feel my legs, ankles, and belly to determine if my body temperature was adequate (they were never happy with me on that one – saying I was always too cold and should wear a neck warmer and ankle warmers, because “you must keep baby warm!”).  This was probably the thing I failed at the most since in Okinawa it’s ALWAYS HOT and no, I will NOT wear a neck warmer when it’s already so humid and I’m having prego lady hot flashes!  They were not so thrilled when I would arrive in my flip flops, exposing my feet and ankles all the time.

The midwives were so friendly, warm, and maternal – always smiling and so welcoming (just like any Okinawan).  Another super cool thing about being pregnant in Japan is this other awesome little book all expectant moms receive called the Maternal and Child Health Handbook.  Yui gave me this book, which I brought to each appointment, and that was used to keep track of my entire pregnancy.

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After discussing my overall health with a midwife, we would go back into the waiting area, then be called in to see my doctor.  Dr. Fumi is the OBGYN at Yui and her husband is the pediatrician. They are the only two doctors at the clinic and were wonderful.  She was always very serious when doing her job, focusing intently on the ultrasound, and looking at every angle very intensely and thoroughly.  One big difference with pregnancy appointments in Japan is that they offer an ultrasound nearly every appointment. Usually they are not long ultrasounds, but the doctor always likes to check on the baby.  Dr. Fumi realized that Americans are not used to this, so she would let us decide if we wanted an ultrasound each appointment, except for certain appointments when they were mandatory.

Besides the ultrasounds, here are some other notable differences between Yui Clinic and an American hospital:

  • If you are a first time mom, Yui keeps you for at least five days after the birth.  Five days!
  • Where do you give birth?  On a tatami mat!
  • Mom can eat while laboring and they will make you smoothies or snacks as needed.
  • After your baby is born, they will cook you a whole Okinawan fish as a celebration meal along with Okinawan seasonal foods and ingredients– yum!  For your meals during your hospital stay, there is a community dining room where you can eat and chat with other parents with new babies.
  • I’ve heard that they will also give mom a massage and wash her hair after the birth (sounds amazing to me).
  • Their midwives and nurses are trained in breastfeeding support and help moms achieve successful breastfeeding during their stay, so that they are prepared when they go home.
  • Our appointments cost between 5,000¥ and 8,000¥ (about $41-$66) each visit (and were reimbursed by our insurance).  Can you believe that?  Anyone who has ever received a medical bill in the U.S. knows that is ridiculously cheap!

While I was pregnant, I taught English at a preschool near Yui.  It was fun to chat with the other Okinawan moms about my pregnancy in my broken Japanese.  Many of them had their babies at Yui and they were so surprised and happy that I would have my baby their too.  My preschool students would rub and kiss my belly and say “Hi, baby!” – it was the best.

People often ask me if I wish I knew about Luca’s condition sooner, and the answer is no.  I miss those days of ignorant bliss. Of having my big pregnant belly and believing that everything was happy and wonderful.  I’m so glad that the majority of the time that I had Luca in my belly I was stress free, focusing my attention on just taking care of us and loving him.  By the time I found out what was wrong, my bond was already so strong with my son.  In some ways that probably made it much harder and more painful to say goodbye, but I also know that the bond we had ensured that he felt so much love from his mom and dad.  That is something that makes me smile every day.

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Finding My Voice

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For weeks now, I have thought about starting a blog.  Mostly to speak about my experience surrounding the loss of my son.  But also in hopes that my thoughts will reach someone else who has faced this sort of loss.  To let them know that they are not alone in this journey.  But this blog is mostly for me.  To have a voice. A means to communicate about our beautiful son.  Losing your baby is not something that people want to discuss.  It is not happy or comfortable.  It is not easy.  But, if you are reading this and have children of your own, you know that your kids are your life.  If you lost them, that would not change.  Imagine if when your baby was born the doctor said, “Okay, you can have him for a few hours, and then you must say goodbye.  You will never see him again and you probably shouldn’t talk about him either.”  This is how I feel sometimes.  I know that talking about him won’t ever bring him back.  But talking about him is what heals me.

Today is special as it is four months since Luca’s birthday.  Happy heavenly four months, my sweet baby!  The days leading up to the 5th of each month are always emotional for me as I imagine what he would look like by now… how he would have grown.  I see my friends post monthly pictures of their babies and I imagine what my life would be like at this point.  How would he be sleeping and eating?  Would he look more like me or his daddy?  Would he be so chubby by now? Would he smile at me every day?  These thoughts are both happy and sad.  Most days since Luca died I still cry.  But, crying is a good thing.  I am making small steps on this very long and complicated journey through grief.  Grief is not linear.  Some days are good, but then there are days that are just impossible.  Impossible to imagine how I will ever find happiness again.  Impossible to comprehend how this is actually my life.  Impossible to understand my relationship with God.  I am learning to have patience with myself and to not push those feeling of deep sadness away when they come, because if I let them be, I can eventually be happier after.  As the days pass, I am slowly able to experience more joy and not feel guilty about those little shreds of happiness.  Not feel like I should not be allowed to be happy.  Luca would want me to be happy.  And I know that he is happy because he shows me in so many ways each day that he is okay and he is with me.

As time continues to go on, my greatest fear is that the world will forget about Luca and his beautiful little life.  I want to keep his memory alive and honor him in the best way that I can, because I will always be his mommy.  I want to be very real and talk about what it is like to experience such loss, because I have learned that so many other parents have faced this.  Experiencing such grief can be the most lonely process and I hope that our story might give an ounce of hope to another bereaved family.  I don’t know what tomorrow will bring or if a week or month from now I will be up to continuing to share my thoughts, but I know that I will always do my best to put one foot in front of the other and keep moving forward to live for Luca. ❤