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. ❤

Luca’s Story – Part 8 – Labor of Love

I feel like I have been holding off on writing about Luca’s birthday, because I’m afraid of not writing it beautifully or perfectly enough.  It was the biggest day of my life, next to marrying my handsome husband, and I want to depict it well.  However, all I can do is be real.  Disclaimer: this post is about childbirth, so if that’s not your thing, don’t read on!  But, I must write about it, because this day was the most beautiful and special of days to me.  The entire experience with my husband and my beautiful boy will forever help to heal my heart.


 

In my last post, we had just found out that sweet Luca’s heart had stopped beating.  After the doctor gave my husband and I some time alone to process what we had just learned, she came back to discuss the next steps.  As I mentioned previously, most people don’t ever really think about the fact that even if your baby dies, you must still go through labor and delivery in the majority of cases. We had already discussed this scenario and decided that I wanted to be induced immediately, so that we could meet Luca as soon as possible and see him in his best condition.  The doctor told us she would notify the hospital staff.  In the meantime,  and we could go home and take our time to talk to our families and pack a bag, then come back to the hospital, so that’s what we did.

My husband drove us home.  We had arrived separately to the hospital for the appointment, but I was in no condition to drive myself at that point.  We called one of the military chaplains on the way home and he invited us to come to his office.  We stopped at the chapel on the way home to pray with the chaplain.  If I am being honest, I will say that at that moment, sitting with the chaplain and hearing his words did not comfort me.  I felt like none of his words were penetrating and nothing made sense.  We were trying to do the right thing… to pray for Luca and try to get through this and heal ourselves, but everything was just confusing and sad.  We got home and I sat on the couch while my husband called his boss.  We couldn’t call our families yet, because they were all sleeping with the time difference.  We went upstairs and began to pack a hospital bag.  How do you even pack a hospital bag when you know it will be the only time you’ll ever spend with your child?  I packed about 10 outfits because I had no idea what would fit him since I knew he would be so tiny. As we were getting things together, my nurse Katie, who had been helping us since we started going to the U.S. Naval Hospital, called us.  She told us that she thought the hospital staff coming on shift first thing the next morning would be a much better fit for our situation.  The midwife the next morning was one who I had requested, and Katie highly recommended that we wait until then in order to have the best experience.  I didn’t have to think twice to agree to her suggestion.  While I wanted to meet Luca as soon as possible, I wanted his day to be peaceful and perfect and I trusted Katie’s opinion more than anyone at that hospital.  It was vital for those surrounding us to be respectful and compassionate and Katie assured me that would be the case that next day.

We told our families that night and comforted each other as best as we could.  We notified our doula and photographer that we would need them the next day.  There really wasn’t much to say and I was too exhausted to talk to many people.  It was actually good that we stayed home that night because I fell right asleep and slept the whole night.  Katie told us that the hospital would be calling between 5-6 a.m. the next morning to confirm when we should come to the hospital.

The next morning, my husband handled all of the hospital coordination and we arrived to the hospital around 7:30 a.m.  I was completely overwhelmed walking into the building.  I remember a friend tapped me on the shoulder and gave me a hug as she spotted me in the entrance area and I know I must have looked like a deer in headlights… with my hospital bag and pillow under my arm getting ready to deliver a baby that I would never bring home.

At the same time, I was really excited.  I was so eager to see his sweet face and hold him and smell his sweet baby smell!  It was such a strange mix of emotions.  Looking back, I don’t think I cried as much that morning.  I think I had run out of tears.  My husband and I were both in “game time” mode and just ready to hear about the next steps.  After checking in, we were brought to our room, which was the same room Katie had told us she would try to secure for us – a nice big private room all the way at the end of the hall.  On the door hung the symbol of a leaf, signifying to all medical staff that we were experiencing a loss, so they could act accordingly.

As most parents know, labor is a lot of waiting around!  When we arrived, there was plenty of paperwork to do, and lots of discussion to be had.  After that, our midwife discussed induction options with us.  At 34 weeks pregnant, my body was not showing signs of being ready for labor, so induction was absolutely necessary.  Induction for the purpose of delivering a stillborn baby is completely different than an induction of a 40 weeks pregnant lady who just needs a little nudge in the right direction.  She told me I had two drug options: Cervidil and Cytotec.  Now, please note that I’m not a doctor or an expert, so I am simply describing all of this as I remember it and from my own perspective.  The two drugs had differences.  Cervidil was – generally speaking – a gentler approach.  The induction would take longer, but it was “less aggressive” and gentler on my body.  Cytotec would work more quickly and tended to be more aggressive (and therefore painful).  I had read and watched documentaries that talked about how terrible and even potentially dangerous Cytotec was (go ahead and google it), so I quickly chose option number one, Cervidil.  We told the midwife and she left to go secure that for me.  I didn’t think twice about it until she came back and told us that unfortunately, the hospital was OUT of Cervidil!!!!  You have got to be kidding me.  If you live on this island, then you understand how ridiculous and almost comical that is.  We have regular issues at the military commissaries (grocery stores) where they will be out of milk and yogurt for weeks.  I couldn’t believe it, but then again I could – typical Okinawa!  Because shipments from the U.S. are not frequent and take so long to get to Japan, she said she had no idea when the hospital would get more.  She offered to call nearby Japanese hospitals to try to get some, but warned us that the Japanese hospitals usually did not carry that particular drug.  I asked her to please call, but she came back with no luck.  My only option to meet my son any time soon was the Cytotec, so I nervously gave the go ahead to administer the induction.  I have to say that I truly appreciate how straightforward my midwife was.  She explained everything in detail and answered every question I had.  I never felt rushed or pressured to make a certain choice.  It was extremely overwhelming at times to make these decisions and a couple times I just asked her, “If you were me, what would you do?”  I appreciated her kindness and nonjudgemental feedback.

I believe they had to give me several times the amount they would have given a full term pregnant woman, because they really had to kickstart my body into labor.  When the medication was administered I wasn’t having any contractions.  By about 40 minutes later they picked up and quickly!  I went from zero to one thousand in less than an hour.  My midwife had warned me that it was not going to be pleasant.  She knew that before all of this I had wanted a completely natural birth.  She told me not to judge birth based on this birth, because the amount of medication I had to take would make it so much more intense and painful.  She wanted me to know that if I had another baby in the future, I could achieve my goals and not to be discouraged.  They were so right.  The contractions were so intense.  I wasn’t surprised so much by the pain of each individual contraction (hey, I knew labor wasn’t going to be a walk in the park), but I really had no gradual build in my labor.  It went from nothing to me being out of my mind so fast.  And, the worst part about it was that I had no break in contractions, they were one after the other.  I had no chance to relax and prepare for the next one, because it was already there.

I was induced at 11 a.m. and made a commitment to myself that I would try my hardest to stick to my goal of working through everything on my own.  I told the nurse not to even mention an epidural to me – that if I decided I wanted one, I would let her know.  I wasn’t ruling it out, I just wanted to make my own decisions.  She respected my wishes.  I worked through the contractions as best I could for about five hours.  My doula, Amanda, and my husband were wonderful, helping me into different positions, playing my hypnobirthing CD, rubbing my back.  Amanda was so great at reassuring me and helping my husband know how to best support me.  At one point, she suggested that he take me into the shower because the warm water would help me to feel better.  I had just blow dried (and straightened) my hair that morning (hey, I had lots of time waiting around!) and the whole time I was in the shower I was yelling “DON’T GET MY HAIR WET!”  Poor husband!  Haha.

After five hours, my midwife came back and asked if I wanted to know my progress.  You’re damn right I wanted to know my progress!  Unfortunately, I was only three centimeters dilated (and I had started at one). I felt so frustrated and defeated.  I could not stand the constant pain – my husband later told me that the screen monitoring my contractions was just basically a flat line way up high, showing that it was just contraction after contraction after contraction with no dip or break. I told the nurse to give me the epidural.  Now.  She went to go get the anesthesiologist, but came back and said he was “unavailable” dealing with an emergency in the ER (there is only one on shift at a time here).  ARE YOU KIDDING ME?!  I told her she needed to (please) figure something else out, so she brought me morphine (or something similar).  The rules were much different for me because Luca was not alive – they did not have to worry about medication like that putting stress on the baby, so I was permitted to have pain killers.  I was also able to sneak a few snacks, since the likelihood of an emergency c-section was very low for me.  The morphine gave me almost instant relief.  I finally could take a breath and rest a moment.  It also made me pretty loopy!  When the anesthesiologist finally arrived, he was a serious dude and started giving me some spiel about how he was going to put a needle in my back and it would be painful, and I said something like “YOU DON’T EVEN KNOW PAIN!!!”  Men.  Didn’t even feel the needle.  Thanks, morphine!

The painkillers quickly wore off since that was supposed to be just enough to hold me over until the epidural.  The epidural gave me relief for a little while, then about 45 minutes later the pain started creeping back, particularly on my left side.  I just dealt with it for awhile, because I had no idea how epidurals were supposed to be anyway, but eventually I told the nurse that the epidural did not seem to be working.  She called the anesthesiologist and he said he could come try to adjust the epidural.  Before he arrived, my midwife let me know that she would have to check me again soon and if I had not made progress, we would have to talk about either breaking my water or administering Pitocin, another induction drug. The doctor walked in and had me turn on my side so he could try to fix the epidural.  It’s amazing how so many people get to see ALL PARTS of you when you’re in labor and you just don’t care!  At that very moment, my water broke.  Everywhere.  Like, we’re talking out of the movies, people.  I literally had no idea what was going on, but then my midwife happily exclaimed, “Your water broke!”  I was mortified that this young doctor man had witnessed what looked like a category 5 typhoon went through the room.  But, on the bright side, the Cytotec had worn off and my water breaking naturally meant that my body was taking over now.  I was getting closer to meeting my baby!

I definitely need to take a moment to talk about how amazing my husband was during my labor.  He took care of me all day catering to my every need – rubbing my back, holding my hand, massaging my feet and hands, reassuring me.  He put my socks on and took them off about 1,000 times.  Fed me ice chips.  He remained calm through everything and didn’t hold it against me when I got cranky.  He will always be the very best husband and daddy in my book and I can’t ever thank him enough. ❤

Whatever the anesthesiologist did seemed to help for a little bit, but then the epidural wore off again.  I guess it just wasn’t meant for me, because all the pain came back eventually.  After some more time passed and things were getting intense, the doctor suggested I turn onto my left side because the pain was more severe on that side.  Perhaps the epidural medication would go to that side if I moved that way.  My husband helped me slowly but surely roll over.  It felt like that took forever to move, because it was so painful to change positions.  As soon as I got onto my side, I could feel my baby drop immediately and there was a lot of pressure.  I just knew he was ready to arrive!  Of course I started freaking out, and my midwife calmly confirmed that I was ten centimeters dilated and ready to have my baby!

Maybe I’m the only one, but at that point when I realized I was about to give birth, I started to panic.  I just wasn’t sure I could do this!  I hadn’t done this before!  How would I know what to do?  I was feeling every contraction (thanks for nothing, epidural!), but to be honest, I am really glad that the epidural did not work out.  It wasn’t what I had wanted, and now, I was really able to feel the slow build of each contraction and work directly with my body, breathing through each contraction and making progress each time.  And because this was normal labor and not me on drugs anymore, there was a nice break between each contraction where I could collect myself and get ready for the next one.  It was like my body was telling me to just let it do what it was supposed to do.

Those last 30 minutes were really intense, but truly amazing and powerful.  I think having that experience really helped me to cope with our loss and bond with our baby.  After just two or three pushes, I heard my midwife say as he was being born, “Here he is! Grab your baby!” and I did!  I picked him right up and put him on my chest and it was pure love.

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Kristi James Photography


It is my hope that somehow my blog can reach others going through similar struggles.  I want them to know that they are not alone.  Stillbirth affects about 1% of all pregnancies and about 24,000 babies are stillborn in the U.S. each year.  That is 10 times as many babies who are lost each year to Sudden Infant Death Syndrome (SIDS), another terrible cause of infant death that is much more well known and widely discussed (cdc.gov).  Additionally, around 1 out of 2,500 babies are affected by Trisomy 18 (www.ncbi.nlm.nih.gov).  We can be glad about the fact that most pregnancies result in healthy babies, but let’s also not forget the thousands of families who quietly struggle through this type of loss on a daily basis.

I will pause for now, because I feel that I need a whole other post for the time that we spent with Luca.  It is my wish that by writing about his birthday, people will learn that while it was a very sad day, it was also incredibly joyous.  I love when I can share my birth story with others – to celebrate Luca, or to simply be a normal mom and compare the ups and downs of labor.  To be continued… ❤

 

 

 

 

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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Good Days & Bad Days

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

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

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

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

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

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

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

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Flowers from the farmers market to brighten a sad day

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


 

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

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

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