An Unexpected Gift

I had to write this short post today, because I am just blown away by a beautiful gift we have just received.  I say a “short post” because I am one day away from my due date with our rainbow baby and so incredibly tired and a bit uncomfortable, but this truly made my week and I have to recognize this amazing person!

One thing I have learned from experiencing the grief of losing a child is that there are a lot of people who you barely know or who you’ve never even met who offer you strength, love, and the most generous acts of kindness. I could go on and on about how incredible many of our friends and family were during the most difficult times.  I can never thank them enough.  But what was most surprising to me was the help and support from people we barely knew or had never met.  We had people brand new to my husband’s squadron who brought us meals and were unafraid of our weary, blank looks, our tears, and our inability to make small talk at the time.  We received cards and gifts from near and far from friends of friends, church members from back home, or others who we had never met, but who wanted to comfort us in our time of need.

Okinawa will always hold a special place in my heart, since Luca was born there. Anyone who knows me or has read this blog or my Facebook posts knows that rainbows remind me of our angel the most.  Living in such a beautiful place was a gift from God where I could feel connected to my son as I witnessed some of the most gorgeous sunsets, scenery, and most of all the rainbows that appeared to me so often shortly after Luca’s death and on other special or difficult days like Christmas and my birthday.

Now we are happy living in Kansas, but I will always miss those things about Okinawa.  Recently, I saw photos that friends back in Okinawa posted or shared of a spectacular double rainbow.  One picture, in particular, was shared on many pages of the full arc of that double rainbow over the ocean in an area we frequented.  I tracked down the person who took the picture (never met her) and messaged her to see if I could buy a digital version of the image or order a print from her.  Her name is Jen. Most of my own rainbow pictures were taken on my phone and I thought this would be such a beautiful photo to hang in our new home to remind us of our Luca and Okinawa.  I didn’t mention Luca or exactly why I was interested in the photo, but nonetheless, Jen later messaged me back asking for my address and said she would like to send me a framed canvas version of the photo – no need to pay, just pay it forward to someone else.

Well, today I opened my door to find a package that I fully expected was one of the thousand things we ordered off of Amazon prime, haha!  Instead, it contained the canvass of the rainbow and it is absolutely stunning!  Again, I just cannot believe the kindness of this woman I have never met who gave us such a generous gift that has so much meaning to our family.  Take a look!

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(Excuse the wrinkled sheets and not quite fully decorated bedroom!)

I am so grateful for people like Jen who really prove to me over and over again that there is so much good in the world.  Do you know someone who is going through a difficult time and you are not sure if you should reach out, write them a note, bring them a gift or a meal, or carry out an act of kindness?  If you can, then you should.  I guarantee they will appreciate it and will take great comfort in your efforts and friendship.  I look forward to finding ways to pay this kind gesture forward to someone else soon.  During those most difficult times, actions always speak louder than words.  Thank you again, Jen!  You have a gift for photography and we will cherish this photo forever!  ❤

 

 

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. ❤

 

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!