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