Luca’s Story – Part 7 – Running Out of Time

I’ve been pretty busy lately and I’ve been meaning to write another post for weeks now.  I can’t complain about my busyness though as my time has been filled with two great vacations with my wonderful husband and great friends!  We had so much fun skiing and exploring northern Japan in Hokkaido, and I also had a blast with some amazing girlfriends in Taiwan.

 


In my last post, I talked about preparing for Luca’s birth and deciding on a hospital.  While preparing for his birth, we also decided to prepare ourselves as much as we could for his death.

Writing the word “death” is sometimes hard for me to do, because each time it reminds me of the permanence of the loss of our son.  It also is a reminder of how our society these days is just not that comfortable talking about death.

My husband and I read an incredibly helpful book that helped us tremendously.  I was desperate to read about how exactly I should handle this; I wanted for someone to tell me what I should do.  One of the best resources I found was the book, A Gift of Time.  Nothing can prepare you for the death of your child, but I can honestly say that reading this book prepared me as much as possible.  I want to do a full blog post reviewing this book in the future, but in short, it is written for families who are expecting and have been given a fatal diagnosis.  It talks about many important decisions to consider and ways to plan during that very difficult time, as well as interviews with families who have gone through this, their feedback, and what they were glad they did or wished they had done.

One of the things that many families suggested was planning aspects of their child’s funeral before the birth.  Not necessarily planning the entire thing, but thinking about general aspects of that day, so that you could be prepared when the time came.  I honestly could have never imagined making such decisions.  There are probably people out there who might think we are giving up on our baby to plan such a thing, but I disagree (and to be honest I don’t want to hear anyone’s opinion on this if they have not gone through it themselves).  I truly believe that planning that special and sacred day for Luca was an act of good parenting.  I sat on the couch listening to music, crying through each song as I read each lyric and thought about what would be most appropriate for him.  I spoke to our minister back home about what a funeral service for our baby would be like.  I had not attended many funerals at my church, thankfully, and really did not know what to expect.  I found myself getting frustrated at times, because people helping us with this process would ask us what we wanted – what kind of headstone or what aspects of the memorial service did I want to include?  How was I supposed to know what to do??  My mother helped us tremendously by visiting each of the cemeteries in town and helping us choose the most beautiful spot where Luca would be laid to rest.  While it was so difficult to talk about those things, I have zero regrets that we took the time to do that.  I would have never been able to make all of those decisions just days after Luca passed.  Additionally, planning all of this from the other side of the world was hard enough.  I did not want his funeral to be thrown together at the last minute.  I wanted it to be a beautiful celebration of his little life where each song, photo, flower, scripture reading, and more would be exactly how we wanted to honor him, remember him, and pray for him.

Another idea from the book we read was taking photos – as many as possible.  Pregnancy photos, family photos, and birth photos.  Families said that while the photos might be hard to look at early after the loss, it was the best decision many of them made.  That they couldn’t have possibly had enough photos of their baby.  I wanted to commemorate my pregnancy with Luca and remember the time that he was alive and well in my belly, so I asked my friend Mindy to take pictures for us.  I hadn’t really thought about maternity photos until we had received the fatal diagnosis, but I knew that we had to have them after that.  Mindy had offered to take pictures for me at my baby shower, but that was obviously canceled, so instead she insisted on taking these photos as a gift to us to remember Luca.  It was the best gift ever!  Another friend of mine, Kathy, did my hair that day and also insisted that be her gift.  Our military family here is like no other.  Our friends took such great care of us each step of the way.

The day of the shoot turned out to be spectacular weather.  It was the end of May and the middle of the rainy season and most days were disgustingly humid and overcast or raining.  That day, the humidity lifted and the sun came out without it being excruciatingly hot – that never happens here! We went to Toguchi Beach, a gorgeous beach that many photographers frequent since it has stunning views of the sunset and beautiful rock formations.  Mindy made me feel like the prettiest pregnant mama.  Her and our friend, Brette, who assisted her, spent hours with me and my husband snapping so many photos.  She is so talented and I am forever grateful for these stunning pictures we have to commemorate our time with Luca and our time here on this incredible island.

During those last few weeks, we continued to have many meetings.  Almost all of the people helping us along had never dealt with a scenario like ours, yet everyone was so gracious and willing to help in any way.  We continued to meet with our doula and I kept practicing my hypnobirthing for the big day.

I also decided to meet with a lactation consultant.  With all of the traveling I had to do and everything that had happened, I never got to take a breastfeeding class.  I knew it was unlikely that I would get to breastfeed Luca, but there was a possibility.  If there was even a chance – even if only for an hour – I wanted to be prepared to know what to do and how to comfort my baby.  She was incredibly knowledgable and came to our meeting with more information that she had researched specific to Luca’s diagnosis.  We talked about normal breastfeeding tips, and also about breastfeeding for bonding and comfort care.  She taught me ways that I could bond with Luca through breastfeeding even if he wasn’t strong enough to feed that much or at all on his own.  This was so important to me to have this knowledge, even if I never got to use it.  I found Christy through The Birth Education Center of Okinawa.

I continued to go to weekly appointments at the U.S. Naval Hospital Okinawa.  They told me I could come in as often as I liked, but wanted to see me weekly.  Every Thursday, my husband and I would get to see Luca’s beautiful face on the 4D ultrasound – it was amazing!!!  This one was my favorite and also makes me laugh because my friends thought that he had thick black hair, but it was really just the shadow haha!

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At that appointment and the ones prior, my doctor would gently explain to us each time that Luca’s heart was becoming weaker.  Fluid was slowly seeping into the chambers… a tiny bit more each visit.  I know she hesitated to tell me this, but I’m glad she was honest.  I pretended not to hear her, but I knew it was a possibility that he would not make it to his birthday.  I asked her if he was in any pain and she said he was not.  That as long as he was inside of me, I was protecting him from that pain and helping him to live.

The week after that ultrasound was the first week of June.  On June 2nd, I went to a farewell lunch for a friend.  Someone asked me at the lunch if I was feeling the baby kick a lot (a typical conversation starter with a pregnant lady of course). They knew our situation and I explained to her that because of Luca’s condition, I had more amniotic fluid than normal and because of that I could not really feel him move as much.  Truthfully, every day was scary because I felt like as the days passed, I could feel less and less.  It was stressful and I would be happy if I could just feel him even just a couple of times each day.  That evening when my husband came home from work, I told him I was really concerned that Luca had not moved.  He comforted me and said I’m sure he’s fine, but let’s just go to the hospital for peace of mind.  By the time we arrived, I was hysterical.  I was sure my baby was no longer alive.  I could barely breathe.  My husband told the nurses what was going on and they rushed me back and immediately checked for a heartbeat.  The nurse (who ended up being one of my labor nurses) was wonderful and immediately said, “your baby is fine, your baby is fine!  That’s his heartbeat!”  We were so relieved.

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33 weeks – one of the last pregnant pictures I have

We went home and felt more relaxed, but the next day was the same and it was hard for me to feel much of anything.  I thought I could feel something periodically, and convinced myself that he was still okay.  The day after that was Thursday, June 4th, our next scheduled appointment with the doctor.  We were excited to see Luca’s little face again.  We didn’t wait long – we never did, because they tried to schedule us at the end of the day, so that we wouldn’t have to face many other pregnant moms or babies.  They called us back and we waited for the doctor.  The doctor came in shortly after and right away put the monitor on me.  She knew that I never wanted to waste any time in doing that.  It was almost as if I knew that his heartbeat wouldn’t be there.  I just had this feeling when she brought the monitor towards my belly.  I felt calm, but also a deep sadness that today would be the day and it was.  “I am so sorry.  There is no heartbeat.”  My fear had come true – I would not ever get to see my son take a breath. I would never get to see his eyes looking up at me.  “Did he feel any pain?” I asked.  “No, absolutely he did not,” she said.  I knew that was what mattered most, but my heart still shattered.  She let us be for a bit and my husband and I just held each other and cried.  It wasn’t the same sadness as when I had received the diagnosis.  To me, that day was the worst.  That day I felt sadness, anger, and utter despair.  That was the worst of it for me.  This day was just sadness and the beginning of acceptance, and love.  Love for my husband who was able to be there with me to hold me as we helped each other along.  And so much love for my sweet baby who was now at peace and with God.


 

Teaching preschool here in Okinawa brings me so much joy.  The other day, I was in Luca’s room and decided to take a few of his books to school to read to my kids.  I picked a big colorful ABC book and when I read it aloud to my kids it was the first time I had opened the book.  I smiled when I read aloud and saw, “A is for angel” and “R is for rainbow!”  How perfect!  It made me really happy to do this, because in a way I feel like reading to my sweet students sometimes feels like I’m reading to him.

Before I end this post, I have to mention that I received a wonderful message from a friend the other day.  She told me that she was at a party and was chatting with a woman and then asked her if she had children.  The woman said that she had three children, but one, a son, was in heaven.  My friend asked her lots of questions about her son who had been stillborn, and the woman was very thankful for my friend being willing to talk to her and not be uncomfortable.  My friend told me that reading about Luca had “opened [her] eyes to how ignorant [she] was in reacting to such an event.”  This is really the best possible thing that can come out of this blog.  It is truly my hope that Luca’s story can make people realize that life has value no matter how long or short that life is.  Allowing someone to talk about a child they have lost, even for a brief moment, is such a gift.  I am so glad and grateful that my friend took that step out of her comfort zone and spoke to this woman about her experience. ❤

 

Luca’s Story – Part 6 – The Gift of Time

Grief is confusing.  It’s tiring, yet therapeutic.  It is lasting and very unpredictable.

I felt so much better in this new year… and then this past week just kind of sucked.  I’m much better now, but my point is that you just never know how the day will be until it’s there.  Things like having a routine appointment at the hospital here and walking down the stairwell, triggering thoughts of struggling down those same stairs after they told me Luca’s heart had stopped… trying to escape without anyone seeing me so emotional and gasping for air.  Having one of my sweet preschool kids eagerly ask, “Akachan?  Akachan?”  (“Baby?  Baby?”), because she remembered me being pregnant and loved to say “hello” to the baby in my belly.  (While that made me a little sad, it did warm my heart to know that she remembered my Luca!)  Having to explain what happened in my limited Japanese to one of my schools that I started teaching at again (hadn’t seen them since I was pregnant) and receiving only a blank stare of confusion and horror.  Going back and forth on the phone 12 time zones away between TRICARE and the Boston hospitals… praying that I submitted all of the correct paperwork to make sure all of Luca’s costly medical bills were covered and dealt with (they finally are and that was a huge relief).  And that was just this week.

Time does not heal all wounds.  Parents who have lost a child do not “move on” – they find ways to move forward.  Those moments were all triggered by things out of my control, yet I am becoming better at handling them.  It still surprises me, though, that you can feel like you are doing SO much better and having many happy days, only to wake up to an anxiety-filled, very difficult day the next day.  One day at a time is what I tell myself.


I really want to get back to what this blog started as… and that was to tell Luca’s story.  (If you would like to read the previous “chapters” of Luca’s story click here.)

After my U.S. trip came to a close, I survived the journey back to Okinawa and finally got back to my husband about four days after he had returned to Japan early from his deployment. It certainly wasn’t the romantic post-deployment reunion we had in past deployments.  When I arrived at the Naha airport, I was utterly exhausted and didn’t even have energy to cry even though I wanted to.

My husband took a couple days off from work, so we could spend some time together and reconnect after being apart for over a month while receiving so much bad news that had yet to sink in.  We had a lot to talk about and figure out, but tried to balance that with just relaxing and being together and enjoying the little baby in my belly.

Once I recovered from the jet lag, we went to a barbecue at my friend Laura’s house the first weekend I got back.  I honestly did not know if we should go.  Our friends who were going to be there knew our situation and I just didn’t even know how I was supposed to talk to people and figured no one would have any idea how to talk to us with this enormous elephant in the room.  My husband encouraged me to go, so we went.  I’m so glad we did, because my friends were so supportive and did their best to say the right things, listen, and put a smile on our faces.  I remember sharing the name we had picked and feeling so proud.

The last two weeks of May, we made an effort to do some Okinawa adventuring with Luca.  Even though it was getting hot outside and I was getting bigger and slower by the day, we were determined to take Luca to some of our favorite spots.  The Okinawa aquarium is a place I always imagined taking Luca someday, so we took an outing there.  My husband had never been!

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Exploring Sesoko Island

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Ice cream on a hot day

The next weekend, we signed up for glass blowing at one of the local Ryukyu glass stores… something Okinawa is famous for.

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It wasn’t quite as difficult as it looked!

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The finished products!

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Okinawa soba for lunch!

We wanted to make memories together as a family.  Every minute counted as we just did not know how much longer we would have with our son.

The rest of our time was spent coordinating meetings and a birth plan.  Before I ever found out about Luca’s condition, my birth plan was all about the birth – my goal was to labor naturally, while trying to limit intervention as much as possible.  I actually didn’t even really need to put that in my plan, because the Japanese clinic was completely aligned with my birth goals.  However, all of that changed when we were given Luca’s diagnosis.  Our birth plan became less about labor and more about answering questions like what memories did we want to create with Luca for the short time he would be with us?  What kind of care did we want for him during that short precious time?  We met with my doctor at Yui clinic the day after I got back and told her everything.  Because Yui is a small birth clinic, I wasn’t even sure that she could keep me as a patient.  However, on the other hand, Luca needed comfort care – not complicated medical equipment.  Dr. Fumi said we could absolutely have our baby at Yui if we still wanted to.  I was thrilled to hear that was an option.

Early the next week, we met with the doctor who handles high risk pregnancies at the U.S. Naval Hospital Okinawa.  I will be completely honest, I went into that meeting with my guard completely up, ready to attack like a mama bear.  I had not had great experience with military medicine previously and I was really concerned that they would want to dictate how Luca’s birth would go.  Or tell us we would have to be medically evacuated to Hawaii.  The military is so used to saving lives every day, that I was convinced that they would want to take my son away from us and try to save him when I knew his life could not be saved.  Thankfully, my preconceived opinions were wrong.  The doctor sat with us for over an hour.  She listened to our story from start to finish, answered all of our questions, cried with us, and hugged us.  She was truly amazing.  She then brought us to meet with one of the neonatal doctors.  He started our meeting by asking if he could pray for our son.  He also cried with us.  There were so many hypothetical situations that could occur, and we wanted to try to plan for each of those situations as best as we could.  These are situations that you would never ever think that you would ever have to face.  We asked, if Luca survived for minutes or hours – God willing – what would they do?  I wanted to know that they were not going to tear my baby from me and hook him up to machines where he would be alone.  If we were so lucky to have that time, I wanted him to know the love and comfort of his mom and dad and pass peacefully in our arms.  We also wanted to ensure that he would not suffer.  The surgeon explained everything to us.  Both doctors agreed that letting Luca be with us was not only possible, but encouraged.

What if he survived a week?  Could we take him home?  The doctor said yes.  He explained how we could do that and about the feeding tube process, since Luca would most likely not be able to eat very well on his own.

We then spoke to our nurse Katie (my amazing nurse who I have spoke of before).  She leads the Resolve Through Sharing program at the hospital and works with bereaved families. She showed us the hospital room that she would try her best to put us in when the time came.  It was a large room at the end of the hallway and would ensure privacy.  She said a special symbol of a leaf would be placed on our door to let the hospital staff know that we were experiencing a loss.  Katie gave me her cell number and told me to text or call anytime and that she would do everything in her power to be with us on the day of the birth.  She also showed us a memory box that the hospital would put together for us to remember Luca.  My husband and I were just blown away.  We were so pleasantly surprised by the care and compassion being shown to us.

One last question we had to ask was, what would happen if our son could not make it to his birthday?  This is something that I have honestly never wondered, because why would you? What do you do if our baby dies?  Well, you still need to have your baby.  My doctors and most doctors encourage a vaginal birth for the sake of the mother’s health.  C-sections are major surgeries and doctors do not want to subject women to that unless medically necessary.  Many mothers who have a stillborn baby think that idea is torture.  Why should a woman who lost her baby be forced to go through all of that pain for hours or days when you have already been through so much pain and suffering in your heart?  I actually saw it from a different perspective.  Both my husband and I still wanted a natural birth even if Luca couldn’t make it.  I wanted this not only for my own health, but also because I felt that experience would help me to work through my grief.  I wanted to have that beautiful experience with my baby.  And no physical pain could ever compare to the stabbing pain in my heart.  On the other hand, I told my husband that under this scenario, I would not rule out an epidural because I just didn’t know how I would feel under these circumstances – God forbid.  Baby boys with Trisomy 18 have about a 40% chance of not making it to their birthday.  It was hard to face that a stillbirth could be a reality for us.  I prayed for Luca and tried not to think about it.

The doctors all said that we as Luca’s parents could make every decision.  We really walked away from the hospital meeting feeling that the hospital and doctors were all on our side.  I knew before I even asked my husband that we had both decided that the military hospital would be where we would have Luca.  I was disappointed to not have the birth at Yui, because I loved the staff there and I know it would have been a great experience, but I was too concerned about the language barrier when we had so many unknowns about how Luca’s birth would go.  I wanted to be somewhere where we could communicate quickly and easily.

It was around that time too that we decided we would tell everyone what was happening.  We had told some close family and friends, but many family members and friends still did not know the news.  I thought about it for about two weeks and then decided that it was best to just email everyone, because I could not bear at that time to tell people individually. At that point too, it was so hard when people would come up to me excitedly and ask, “How is the baby???” Or for the 100th time, “What is your nursery theme???” On the other hand I worried about what people would think.  I worried that people might blame me for Luca’s diagnosis.  That this somehow had to be my fault.  In the end, I wrote this email to our friends and family near and far:

Dear Family & Friends,

It is with a very heavy heart that we write this letter to you.  Please forgive this email, but we just don’t have the energy at this time to call everyone.  We wanted to give you an update on our baby boy.  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 week and a half ago, we learned that he also has a rare chromosomal condition. 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 already know he is perfect.  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 know it’s hard to know what to say to us and want to let you know that you can talk to us about our baby. Sometimes we may be sad and upset, but mostly it helps to acknowledge our baby boy and what’s going on otherwise this is a very lonely process. In the coming weeks and months, we will be needing an unbelievable amount of strength and courage.  If you can, please pray or hope for these qualities for us.  We will need them.  We are so lucky to have the wonderful friends and family that we have. We couldn’t get through this without you all.

We also wanted to share the name we have chosen for him – Luca Gabriel Ruotolo. Luca means “bringer of light” and was also a saint known for healing. Gabriel is after the angel Gabriel, also meaning “strength of God.” We will have our sweet Luca here in Okinawa, so that we can be together as a family, and will live in Okinawa until our tour is finished towards the end of 2016.

Again, we appreciate your love and support.

Love,

Jessi & Joe

I’m glad that we did that because there is no way I could have brought myself to tell everyone in person.  People wrote us so many beautiful and supportive messages that I read to this day.

It was also hard to carry out daily life at that point.  Some people were just too afraid to talk to me, and even in some cases acted like I was not even pregnant anymore.  That was so painful. I stopped going to crossfit, which had been a regular thing for me, because I would have had to tell my gym friends in person and I couldn’t handle it.  The alternative was not to tell them and have everyone ask about the baby.  I couldn’t handle that either.  I tried to get in and out of the post office and grocery store as quickly as possible, or shop off base so I wouldn’t have to run into anyone.

My close friends, on the other hand, helped me through.  It was the best when people just acted normal and acknowledged my pregnancy despite the circumstances… like if a friend saw me and exclaimed, “How is Luca today??”

One of my best friends who was also my neighbor here in Okinawa had a little baby girl who was a few months old at the time.  I think because I was so close to Hope, it didn’t bother me to be around her daughter, Cara.  In fact, it made me happy to hold her sweet little baby who always smiled when I held her.  Her husband was away for a few weeks at the time and she asked if I would want to come help give her little girl a bath.  I helped her with this routine several times and while it was sad to think that I wouldn’t be able to do this many times with Luca, it was therapeutic to share those special moments with them.  I knew I could be myself around them – happy or sad – and it was okay.  Cara will always have a special place in my heart because one of the very last pictures I have with Luca still safe in my belly was this one. ❤

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Me, Luca, and Cara 🙂


My husband and I were on a walk – I don’t remember if it was before or after Luca – and we talked about whether it was good or bad that we found out that he would not survive.  Would it have been better to live in blissful ignorance?  Now, I can definitively say that we are glad we had a month to prepare our minds and hearts.  And to prepare the best birthday for Luca.  That time truly was a gift.  I appreciated being pregnant so much more and did not take a second of that time for granted. ❤

 

Good Days & Bad Days

I started writing this post as a continuation of Luca’s story, but this week has not been easy and I cannot seem to focus on remembering those details at the moment.  The holiday season is hard.  It is a time to celebrate with family and be with loved ones. For someone going through grief, the holidays magnify what you have lost.  All I can say is that grief is very unpredictable.  I never really know what the day will be like until it is here.

Last weekend was six months since Luca’s birthday.  I thought that day would be extremely difficult, since six months is a big milestone for a baby, but surprisingly it was a really good day.  I purposely did not plan much for the day, since I knew that I would need some quiet time to myself.  I thought a lot about what Luca would be like at six months.  What would he look like by now?  I asked my mom to send me a picture of me around that age and searched for baby photos of my husband too. It makes me smile to think about what his cute little face would look like and who he would take after.  Here are our baby pictures: 🙂

As usual, my friends were wonderful and this day did not go unnoticed.  One friend delivered beautiful cookies to celebrate Luca – so sweet to remember and they were delicious!  My husband’s squadron Christmas party was that night and another friend decorated a candle for Luca and put it at our table, so we could think of him throughout the night.  There was a beautiful sunset that evening and we had a great time at the party surrounded by wonderful friends.

I had also just so happened to get a message that very day that Luca’s Christmas stocking was ready!  I had it made locally and wanted it to have something to represent that he was born here in Japan.  I LOVE how it came out!

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In Japan, cranes are a symbol of peace, happiness, good luck, hope, and resilience – all things that remind me of my Luca.  If you would like to read about how the crane became a symbol of peace and healing in Japan, this is an interesting article!

While Luca’s six month birthday was a happier day for me, the days after were not.  Sometimes you wake up and realize that it’s just not going to be a good day.  For me, my grief is magnified when I am overtired, so I try my best to get adequate sleep, but I’m not always the best at that.  On these bad days, my heart physically hurts thinking about my son.  I ache to be able to hold him, smell his sweet baby smell, and touch his soft baby skin. I sit in disbelief that this has really happened to us.  I tell my husband that a lot. “I just can’t believe that this happened.”  And, I cry a lot.  Most of the time it’s not one thing that suddenly makes me sad.  It’s perhaps just being alone with my thoughts.  While I truly feel that those sad days are necessary to keep making progress, they are hard to get through.  They are absolutely exhausting.  They are lonely.

On those days, to cope, I sit in his room and have quiet time, I cancel many of my plans, and I try to muster the courage to tell my husband and friends that I’m hurting.  I think for many grieving people, we worry that our sadness will be a burden for our family and friends.  Or, you think, why bother telling someone you are sad if they can’t fix the problem?  I want to write more specifically about how to help a grieving person in future posts, but I am learning that it is best to tell someone you are hurting and being very honest about what it feels like.  It’s also best to tell people how they can help you.  For me, that is talking about Luca.  On one of my bad days, my friend came over and I showed her Luca’s room for the first time.  We sat in there for awhile and talked.  I felt so much better after being able to share what brings the most joy to my heart – my son.

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Flowers from the farmers market to brighten a sad day

A college friend of mine who is a counselor did a great piece on dealing with loss over the holidays.  I think it’s so true when she says “there can be pain and sadness alongside joy and happiness.”


 

A few months ago, when I was beginning to get over the initial shock of our loss, I told my nurse friend who helped to deliver Luca that I wanted to help in some way.  I wanted to visit families at the hospital who had experienced a loss similar to ours.  I certainly hoped that there wouldn’t be many such losses, but I felt that I could help give other families hope, and that perhaps helping others would help me heal too.  I knew that I had to be careful to protect myself in my grief process – that maybe not every situation would be something I could handle – so, we handle it on a case by case basis.  Recently, I was notified that a family had lost their son and I went to the hospital and sat with them for awhile.  I won’t discuss the details of the visit, but will say that it was so nice to be with them and do my best to offer comfort to them after they had said goodbye to their child.  One of the hardest things is to be alone in that hospital room after you say your final goodbye.  Or to wake up the next morning and realize there is no baby in your arms.  When I was in the hospital, I would have loved to talk to someone who truly understood that kind of emptiness.  I would have liked to see someone who had been through the same pain, yet could find happiness again.  I asked them to show me pictures of their baby and explained how perfect and beautiful he was.  I tried to think of all of the things I would have wanted someone to ask me or talk about after Luca was born.  There were times that not much was said, but just sitting in each other’s presence was peaceful.  I feel honored that they allowed me to be there with them during that special, but heart wrenching time.

On my way out of the hospital, I had a question for the nurse.  In my last post, I wrote about tracking down the clothing that Luca had worn to make Luca Bear.  The only thing that was missing from Luca’s memory box was his tiny blue knitted premie hat.  I asked the nurse if they would, by any chance, have an extra one of those hats that I could have.  She went to look and after awhile she reappeared with the hat!

She said it was the only hat left like it and it was meant for us!  That made my day!  Moments of happiness like this one help me get through the worst days.  I am thankful for everyone who has been so patient and kind and willing to walk this difficult path with me. ❤

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

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