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!  ❤

 

 

34 Weeks

It’s been a looooong time since I’ve last blogged and I’m not proud of it.  Actually, many times I feel guilty for not keeping up with this, because it is a way that I honor my son.  And sometimes that makes me feel like a bad mom.  However, the emotions of this second pregnancy have been overwhelming, and I just haven’t been able to sit down and put my thoughts in order as I would want to.  Not to mention, we moved from one side of the world to the other (while 30 weeks pregnant with a very unhappy cat), and had to get set up from scratch at our new place and figure out things like driving on the right side of the road again and other reverse cultural shocks.

Lately though, I have really felt the overwhelming need to write.  There are and were a lot of moments during this pregnancy that have been especially hard to get through and this 34th week is one of them.  Luca’s heart stopped beating and I delivered him at 34 weeks, so that has been on my mind so much lately.  It’s strange and difficult to experience huge amount of sadness for Luca, excitement for this new baby boy, and tremendous anxiety and fear for the health of this baby all at the same time.  Truly it can be exhausting.

For awhile I postponed a lot of things that I needed to do to get ready for baby like working on the nursery, thinking about clothing, carseats, etc., because I was afraid that if I made those preparations something would surely go wrong and then I would have a carseat in the car and a room decorated, but with no baby.  I’ve finally started to be able to move past some of those fears and have been able to find joy and excitement in getting ready for baby.  I still have those fears, but I am able to focus more on the excitement thankfully.  It certainly helps that I can feel baby move every day, which calms me and assures me that he is well.

Here are pictures of his nursery, which my husband and I just finished painting (I drew and he painted) – alpine themed! 🙂  Now, just waiting for all of our furniture and household goods to arrive from Japan, so we can complete it!

During the earlier months, I was sometimes overcome with anxiety to the point of feeling ill over whether or not baby was okay.  During those months, I went to the hospital at least three times for fear that something was wrong and I had lost this little boy too.  Many of those instances were around the times in my last pregnancy when bad news was delivered.  I was so lucky to have an amazing care team in Japan and a compassionate and understanding hospital who encouraged me to come in any time that I was fearful.  Whether it was those hospital visits or my regular checkups, each time they put the monitor, doppler, or ultrasound on me I felt as though I would throw up in those seconds that I had to wait to hear a heartbeat or see his little face and know he was okay.

Today, at 34 weeks plus six days, we had an ultrasound.  My doctor suggested it both to ease my mind and because he is my new doctor here and wanted to see things for himself.  The ultrasound technician acknowledged our first baby and mentioned Trisomy 18 and said she was sorry to hear of our loss.  I told her some of the markers that Luca had had that led to his Trisomy 18 diagnosis.  She went to each tiny body part of our new baby boy and showed me clearly and carefully that everything was okay.  I started out the exam with the usual tightness in my chest and higher than normal blood pressure – it was this appointment in my pregnancy with Luca that I heard the words, “I’m sorry.  There is no heartbeat.” I couldn’t help but remember that.  My anxiety dissipated with each exclamation of health that she made.  She understood our fears and did as much as she could to calm them – for that I am so thankful.  I am also so thankful that my new doctor has an ultra calm demeanor (he has delivered babies for over 32 years!), which is exactly what I need for this upcoming birth.

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Our handsome little munchkin!

Now that the craziness of moving has settled, I can reflect on how things are in our new home.  Moving to Kansas has been bittersweet.  On the one hand, it’s been refreshing to have a new start in a new beautiful home, and most of all be so much closer to family and our friends in the U.S.  On the other hand, Okinawa was such a special place for us… Luca was born there and the beauty of the island – the sound of the ocean, the many rainbows and gorgeous scenery that appeared –  truly helped to heal many of my wounds and provided peace in my heart.  We left behind an amazing community – a military family of the most wonderful friends who supported us like I could have never imagined.  They let us talk about our son without it being awkward and we all were there for each other, both to celebrate the happiest of times as well as life’s sorrows.  Being on the other side of the planet now, I miss them so much!!!!

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While I love to get out and meet new people, it has been both difficult and awkward with our circumstances.  One of the biggest daily challenges an angel mom or dad has, which I know I’ve mentioned before, is when someone asks, “How many kids do you have?” or “Is this your first?”  I, like others, struggle with how to answer this question every day and my answer depends on how I feel at that moment.  And usually, no matter what, I feel badly about however I end up answering.  If I am out and it’s a completely random person that I won’t see again, I usually just say, “Yes, it’s my first.” to avoid the awkwardness, but mostly because I don’t want to get into it with someone I’ll never see again.  However, I always walk away from that feeling guilty and sad that I did not mention one of my children.  In the other scenario, I meet a lot of people that I will see again or might see again and usually I choose to say, “No, this is my second.”  Sometimes, it’s easy and they don’t ask anything further and it can be nice, normal light conversation.  But, the natural next question is, “How old is your first?”  Then, I say, “He actually passed away last year.”  That person I’m talking to then feels terrible and goes quiet and I then feel terrible for making them feel bad or awkward.  But, to me it’s still worth it to tell the truth.  I always tell them that it’s okay and not to feel bad, which is kind of weird to console someone else about the death of your own child, but I want people to know that he is part of our family and like any angel mom, I like to talk about him, so that is why I answer truthfully.  I also really don’t want to deal with someone talking to me like I haven’t been through birth before.  The best case scenario is when someone asks those questions and is not awkward or quiet.  Instead, they say they are so sorry and/or ask more about Luca.  While I can understand why people would hesitate to ask questions, I am always willing to answer those questions.  To take a step out of your comfort zone to ask someone about their child in Heaven is a gift to any bereaved parent.  It truly makes my day to be able to talk about Luca even if it’s just one sentence.

Last week, I tried out a yoga class at my new gym.  It was titled, “Gentle Yoga,” which it was, but I still had difficulties doing about 80% of the moves maneuvering my legs and arms around my giant watermelon sized belly… it was comical.  It felt good to stretch and at least I did something!  As we neared the end of the class, the teacher changed the music as we be began our shivasanas.  Yoga has been an emotional, but healing part of my grief journey, and as soon as I laid down to meditate and bring an end to my yoga practice, I instantly recognized the song by Israel Kaʻanoʻi Kamakawiwoʻole… “Somewhere Over the Rainbow.”  I was thankful that everyone else in the room had their eyes closed as I lay there in silence with tears rolling down my cheeks thinking of Luca.

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yoga is difficult when you look like this!

While starting over here in Kansas has been a good thing, it’s also sad to feel that something is missing.  In Okinawa, I kept Luca’s room as a special place devoted to him, and at the moment we are living in an empty house waiting for our things to arrive from Japan.  In Okinawa, I felt so many connections to the beauty of the island that made me feel so much closer and connected to my angel.  My friends and family know that rainbows have always been a sign for me that Luca is right here with me.  I knew it would be different here in Kansas.  And it is.  It is a new place that has a different sort of beauty.  The skies and fields are so vast and the sunsets are beautiful.  I think of Luca when I look at all of the gorgeous clouds in the sky or am just enjoying the beautiful fall weather.  A few weeks ago, we were on our way to pick up my family.  I had been feeling sad that day, just missing my boy and wishing he was with us to greet my family at the airport.  As we approached the airport, a tiny little baby rainbow appeared in the clouds!  The first one I had seen in Kansas!  My heart swelled with joy as I thought of my little angel here with us as we picked up my family.  Turns out they saw it from the plane too and had the same feelings.

God truly knows what we need and when we need it and for that we are truly blessed.  As I pass this 34 week milestone with baby boy, I am trying to keep that in mind.  While I cannot control the outcome of this pregnancy, I know that He will be walking this journey with me and will provide the strength and comfort that I need to carry this baby as long as I can, and bring him into this world into our loving arms. ❤

Another Blessing

I have not blogged since March 17th.  I have had so many thoughts and things I’ve wanted to talk about, but couldn’t.  Couldn’t because I haven’t been ready to, and because my emotions have been so mixed up that I just haven’t been able to find the right words to say.  I would start some thoughts on a page about Luca, his birthday, grief, or whatever was on my mind, but those thoughts were always connected to the fact that…. I am pregnant again. ❤

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Baby Boy at 9.5 weeks 🙂

We are so thrilled for this new baby that we planned for and wanted so much, just like Luca.  Another sweet baby boy!  However, it has been hard to celebrate and feel excited when I am so worried and fearful at the same time.  It has taken me a long time to be ready to share our news.  Even now, I wrote this post close to a week ago, and I keep putting off posting it, because I’m always thinking “what if?”  But I know that I do want to share this pregnancy too, because I want to celebrate this child and I know that no matter what happens in our lives, we have friends, family, acquaintances, and even people we don’t know who support us – we are so fortunate for that.

At first, when we decided we were ready to try for another baby, I needed it to happen ASAP.  I couldn’t wait any longer.  I needed to be pregnant.  I had waited more than the minimum amount of time my doctors suggested to let my body recover, because it took much longer for my mind to be in a better place than my body.  I worked out like crazy to get my body in great shape, so that I would be able to exercise throughout another pregnancy.  I saw doctors and had tests to find out what were the chances of something going wrong again?  Everything came back perfectly fine and healthy – no reason to worry they said.

We were away on vacation in northern Japan when we found out and I could not believe it.  I actually was in so much denial that I didn’t even tell my husband, because I thought the first two tests couldn’t possibly be for real.  By the third test, the lines undeniably meant that I was pregnant, so I knew it was true and surprised my hubby with a cheesy poem in a Valentine’s Day card.  We cried happy tears and celebrated on our vacation.

Now, I am halfway through this pregnancy and due in October.  I still ask myself and God every day, “Will I get to keep this baby?”  I don’t take any day for granted.  I don’t have the same blissful excitement as a first pregnancy or someone who has not been through this pain.  I didn’t want to tell anyone for as long as possible, because I thought that if I showed excitement or that I was expecting things to go well, then something bad would happen.  I just wasn’t ready to be excited.  Most people feel relieved after the first ultrasound when they can hear their baby’s heartbeat or after the magical 12-week mark when everything is “fine” after that, but those appointments and milestones did not do much to ease my worry.  In fact, I struggle with extreme anxiety at most of my doctor’s appointments until they can assure me that baby is doing okay.

I did start to tell my family and closest friends, especially those who live with us in Okinawa, because I physically could not hide it much more after about 14 weeks.  Even sooner than that my friends suspected something, because my belly popped SO much sooner this time around!  I realized that telling my friends was a good thing, because in a way they helped me to feel more relaxed and excited about my pregnancy.  They had seen what we went through and I felt that they knew about my Luca even more than most of my family did.

Sometimes I feel guilty about being pregnant again – that Luca might think I’m moving on, which is so not true.  Another fear I have is that with the passage of time and this new pregnancy people will forget about Luca.  I still love to talk about him and I always will.  I was talking to another angel mom yesterday who lost her son four years ago about this – no one can truly imagine how much we think about our babies who are gone.  All the time.  I am not “done” grieving.  I will always mourn the loss of my first son.  It bothers me when people say “everything will be okay this time,” because I just want to scream, “you don’t know that!” It’s better if someone says, “I really think that everything will be okay this time”or “I am praying for a healthy pregnancy” or just simply, “congratulations!” – you can think, wish, and pray for everything to be okay (and I appreciate that so much – I really do), but please don’t try to tell me that everything will for sure be okay.  I’ve also had people ask, “So the doctors say everything is fine this time, right?  So baby will be okay?” Are you kidding me?! You will never know if everything will be okay!  No doctors appointment, pregnancy milestone, or ultrasound will give me that kind of confidence.  Until this baby is safely in my arms, breathing and crying, I will not stop worrying!  Oh, and then, I will not stop worrying until the day I die, because, well, that is parenting, right??

This new baby boy is not replacing Luca.  He will not “balance out” the unimaginable grief and loss we have experienced.  This will not fix everything.  Think of your children if you have any.  Could another child replace your child?  No way.  Each child is a uniquely special gift from God.  We will love this baby boy just as we love Luca and look forward to telling him all about his older brother when the time comes.

I could write so much more about pregnancy after loss, and I look forward to doing so, in addition to continuing to write about Luca.  For now, I am doing my best to celebrate this pregnancy as I celebrated my last.  I take one day at a time to keep myself from worrying about the future too much.  To me it’s like the end of a long run when you are getting tired.  Just focus on the next light post or telephone pole.  Then, when you get there, find the next one and focus on that… until you reach your goal.  That’s what I’ve been doing with each week, each doctor’s appointment, each kick that I can now feel from Baby Boy.  I will continue to pray for my angel and for the health of this baby, and give thanks to God for these two beautiful children that we have been blessed with who are perfect to me in every way. ❤

 

 

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. ❤

 

A New Year

As I mentioned in my last post, now that Christmas is over, I feel like a weight has been lifted off me.  Not only because the holidays are over, but because of our beautiful Christmas rainbow and the peaceful Christmas day that we were miraculously able to have in the midst of an achingly painful holiday season.

Usually we keep our Christmas decorations up for at least the first week of January (or beyond, since usually I want Christmas to last forever!), but I was really ready to take them down as soon as possible this year.  I wanted to put everything away, clean the house, and start fresh. Momo, who loves climbing our Christmas tree, was not of the same mindset!

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Momo protesting putting the Christmas tree away

Now that it’s 2016, I have mixed emotions.  My family has been through many difficult times this year and has experienced many losses.  Some might say that they could not be happier that 2015 has come to an end.  But, while 2015 was the saddest year of my life, it will also always be one of my happiest, because it was the year I got to meet my son – the only time I could ever be with him on this earth.  I wish I could have frozen those days for eternity to have more time with him, but time goes on.  I never want to forget 2015 – ever.  It is incredibly sad to move into a brand new year without Luca.  However, I remind myself that his spirit is always with me and every day I am one day closer to meeting him in Heaven.

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A beautiful visitor on my walk the other day 🙂

Despite the pain we have been through, most of the time I am able to be optimistic for the future.  I pray for peace, joy, health, and hope for our family.  I pray that I can continue to work on my relationship with God and having faith that He will provide.  That I can continue to find purpose in my life and with that heal my heart.  That hopefully we can move closer to our families at the end of this year who we miss so much.  That I can be gentle on myself when those waves of grief wash over me, and have faith that tomorrow will be a better day.

Wishing you all much joy and many blessings in 2016! ❤

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Ringing in the New Year with my hubby

Surviving Christmas

So it’s been awhile since I last blogged – over two weeks.  I took a break for a couple of reasons.  Once the holiday season was in full swing, I just could not handle writing about it.  What was there to write about?  How much pain I was in?  How I could not take seeing all of the babies’ first Christmases or picture with Santa on my Facebook feed every day?  How we had plans to go home to the U.S. and introduce our son to our family, but not anymore?  Even if I had wanted to talk about that in a blog post, I just couldn’t find ways to put my thoughts together, so I decided it was best to just let myself get through Christmas and reassess afterwards.  I didn’t want to feel angry when I was writing, so I knew it would be better to wait.  And now that Christmas is finally over with and the new year is upon us, I feel like a weight has been lifted off of me to some extent.

Additionally, I got a message from someone a couple weeks ago, which did not help me to channel more positive thoughts.  This person told me I needed to “grieve privately,” that I should “loosen my grip” on everything, that I should just have another baby, and that – drumroll – I need to put my son in “another part of [my] brain.”  I really just want to write a bunch of expletives now, but I already got that out of the way, so let’s just get to the point.  No one should EVER tell another person how to grieve.  Put my son in another part of my brain?!?  I did respond to this person and simply said that it’s not anyone’s business how I grieve.  And that I think I am doing pretty well considering the hell that my husband and I have been through this year.  While the holiday season was particularly hard, most days are happy for me.  I went to holiday parties and was able to enjoy myself.  I work, run my daily errands, take care of my husband, go out with my friends.  Some days I do cancel my plans and stay home because I am sad, because sometimes that is what I know I need.  But, overall, I am satisfied with my progress.  I do realize that I chose to write this blog and am putting all of this out there publicly for all to see, which is a risk I take; however, if it is offending someone, they can choose not to read it – just like anything else on the internet.  I said in my short response to this person, “I do enjoy my life and part of my life is Luca and that is how it will always be.”

Even though I know I should not let this affect me, how could it not?  Those words stung and I wondered for awhile how many other people were thinking what this person said about me?  But, on the other hand, this was the only really negative response I had received from anyone, and in addition to that I have received so many positive messages and emails from so many kind people encouraging me to write and telling me they enjoy reading about Luca.  I have received several messages from people even saying that reading about my grief journey has helped them to get through their own hard times.  And, just the other day, I got a message from someone who asked me to please tell them how they can best support a grieving person – how amazing is that?  Those kind of messages are the best responses I could ever receive.  For those reasons, and because it helps me so much to tell Luca’s story, I will continue to blog, but I am glad I took some time to rest and reflect.

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Beautifully decorated for Christmas – thanks to Nonnina and Mimi!

As Christmas neared, the days became harder to bear… excruciating is more like it.  On Christmas Eve, we attended church.  Admittedly, it hasn’t been easy for me to go to church since Luca, especially here where I haven’t found one that I really feel at home in, and Christmas Eve was no exception.  I usually love Christmastime, but as everyone surrounded me with their families and children and babies, I cried through most of the songs while everyone else smiled and celebrated.  The minister spoke of God’s mercy and how God had spared his son from an explosion in Afghanistan by mere seconds.  While I am happy that his son is okay, this message just did not resonate with me.  I listened and wondered why that man’s son was spared and mine was not. It just didn’t make sense.  I didn’t get it.  Afterwards, I left as quickly as possible, so I wouldn’t have to stop to talk to anyone, and we headed out to have dinner with friends.  The best friends are the ones who take you as you are – happy or sad – and I am so thankful for the many people I have in my life like that.  We enjoyed a delicious, fancy Christmas meal, laughed a lot, and had a great time.

I woke up on Christmas morning and realized I had had a dream that I saw a rainbow.  There was more to the dream, but that is all I can remember.  I dream a lot these days, so it wasn’t anything surprising.  I got up and went across the hall into Luca’s room to have a quiet peaceful moment to think about him on Christmas morning.  First, I opened up the blinds and as I looked out the window, I saw a gorgeous rainbow!  I woke my husband up and made him look to make sure I wasn’t imagining it.  I wasn’t!  I cried happy tears because I just knew that this was God’s way of saying everything was going to be okay and my angel was safe with Him and was saying hello to his mom and dad.  I FaceTimed my mom and showed her too, then went outside to take a walk and snap some pictures.

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View from our doorstep

A picture taken by my friend of the same rainbow with a much better view from the seawall down the street:

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Sunabe Seawall, Okinawa, Japan – Photo Credit: Kelsey 🙂

The rainbow lasted for at least 20 minutes and was so beautiful.  They are less common this time of year, and after it disappeared the rest of the day was gray and rainy.  I feel so incredibly blessed to have received such a special Christmas gift.  It truly lifted my spirits on a day that I assumed would be terribly painful. Christmas was still not an easy day, but I felt more hopeful and peaceful that day than I had in weeks.  My husband and I exchanged a few gifts, watched movies, and mostly relaxed.  We didn’t talk to as many family members and friends, because we just weren’t in the mood to exchange pleasantries and act like we were having a merry Christmas.  Maybe next year I will be able to write about how to survive Christmas when you’ve lost someone, but for this year I was just trying to survive.  ❤

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