Full Bloom Blog

The pregnancy, journey, and loss of our brave boy.

Maybe because this year would have been his golden birthday, or maybe because I have known so many people that have gone through similar situations recently, it’s been put on my heart to share the story about my sweet boy and how God carried us through it.

There are so many details in our story, so many little moments that I could see God working and using people and situations around us, it will be difficult to share all of them. The saying is that the devil is in the details but I believe that it is God who knows our hearts and all the little ways that will bless us and speak to us. From the first week that I found out that I was expecting, I felt a whisper in my heart that we would not be on a traditional journey with the pregnancy. Eight years later, I still look back and reflect on those moments and see that God was preparing my heart. In one of my first OB appointments for Sebastian the doctor had a difficult time finding his heart beat. She promised up and down that it was not indicative of any issue and that I should not be concerned. In my gut, I felt differently though.

If you’ve ever had a baby, you know that the twenty week ultrasound is a big deal! It is also called the anatomy scan. This is when there is a more complex analysis of physical development, measurements are taken, and most of the time the gender can be determined. It’s so exciting to see your baby moving, sometimes hiccuping, and their little profiles are more distinct. Tiny baby noses in ultrasound profiles are just about the sweetest. I remember when I was pregnant with my first born, Annabelle, and wanting to go shopping for all the pink things after our twenty week ultrasound. This time though, I felt completely different. My ultrasound was scheduled for a Monday morning in December. The day before, on that Sunday, I remember standing in the lobby of a theater having just finished our studio’s annual Christmas production. I was chatting with my best friend’s husband and he was asking about the pregnancy and big ultrasound coming up. He asked if I was hoping for another girl or for a boy. I responded by saying “a healthy baby.” He immediately dismissed it and reminded me that that is what we all want, but that I surely had a preference. Again I insisted “just health” and confided that I had a bad feeling about this pregnancy. Unfortunately, I was much more accurate than either of us could ever imagine.

In preparation for the big day, Erik had taken the morning off for the ultrasound. We packed up our (at the time) one and a half year old Annabelle and headed with great excitement and anticipation to our morning appointment. We started our appointment in the ultrasound room and as the tech worked her way around my belly and as images came up on the screen, she became increasingly quiet. Finally, she set down her wand and in a very calm and solemn demeanor, told us that she would return shortly. As soon as she had left the room, I looked at Erik and said “there’s something wrong with the heart”. Initially he was hesitant to believe me and questioned how I could tell. Moments later, the tech reappeared with one of the doctors with her. They huddled around the monitor and pointed and whispered for a few moments, before asking us to gather our things and meet in an exam room. With pits in our stomachs and minds swirling with questions we walked down the hall bracing ourselves for bad news. Trying to keep myself composed even if just for Annabelle’s sake we anxiously awaited the doctor. Once he arrived he had a stack of print outs with all kinds of measurements, results, and unofficial diagnoses. I could tell that he was very uncomfortable with the information he was about to deliver. He told us that there were a number of red flags in our ultrasound all of which pointed to chromosomal abnormalities and likely birth defects. The baby’s fists were clenched, he measured small, and also there were some very serious issues with the heart. He then told us that we would need to schedule and appointment with perinatology at the hospital to have a more in depth ultrasound and get a full scope of all of the issues we were dealing with. He recommended that we go home and call the number to schedule and appointment for the following week.

Who would want to sit on partial information like that for a whole week?! God bless Erik, he is a guy that knows how to take care of things. He insisted that the doctor call immediately and get us an appointment for that day which apparently is not actually an easy thing to do. Praise God, it worked and they squeezed in an appointment for us. Again, we packed up our toddler and our belongings and headed to the car. Through teary phone calls, we sent out prayer requests and tried to find someone who could meet us to help with or pick up Annabelle so that she would not have to sit through a whole day of doctors appointments and meetings. By no coincidence whatsoever, we found out that my aunt Mary was already at the hospital we were heading to, visiting a friend. She would then take Annabelle and meet my most incredible friend, Leilani, who would wind up walking beside us through this whole process. As soon as we entered the building, Mary rounded the corner and I immediately broke down. It was completely by divine appointment, I have no doubt about it. She has always been a huge influence on my life particularly in my faith, and having her there to greet us, pray with us, and care for our first born was nothing short of God’s grace lived out.

Once we checked into the perinatology department, we went in for another ultrasound. This time it was in a large room and rather than a small monitor for the images to appear on, they were on a projected onto an enormous screen and the images were in more detail. After they had captured all of the images and measurements they needed, we were escorted to a private office to discuss the results. The doctor behind the desk handed me a box of tissues and proceeded to explain that our baby (which as a result of the defects, they were unable to determine gender) most likely had a chromosomal defect of either a triplet of the thirteenth or eighteenth chromosome which is called Trisomy Thirteen or Eighteen. Just to give some perspective, a triplet of the twenty-first chromosome is Downs Syndrome and they say the lower the number of chromosome that is tripled, the more severe the complications. In addition to that, they determined that our baby had a congenital heart defect. She informed us of the very grim chances of our baby surviving the pregnancy, and even if he/she was born with a heartbeat, the level of disability and complications would be devastating. After all this horrifying news, she proceeded to give us all the information we would need to know about *termination* laws in Michigan and that it was something we should seriously consider. If there is one thing I HATE about “pro-choice” terminology, it’s that it uses fluffy, unassuming terms like that instead of what it really is. My poor baby, who had his hands in fists, and stretched all day long; the one that relies on me for food, and life – would be killed. You can call it whatever you want, but at the end of the day, it is ending a life. It is murder. Clearly, I halted all discussions related to such things. At the end of our conversation in the doctors office, they recommended that I have an amniocentesis done to draw fluids from the baby to offer a more specific and official diagnosis. I was highly uncomfortable with the concept and turned it down, assuring them that I would think about it and consider it at a future appointment.

The next week was a whirlwind. As news of our sweet baby traveled, I was surrounded by prayers, encouragement, and lots of stories of people who had also faced difficulties in pregnancy. This is when I discovered and named the “Secret Sisterhood”. And you don’t know it exists until you become a member. Most women don’t speak openly about the loss of a baby, pregnancy, or miscarriage, but I assure you, it affects more women than you would ever guess. Other women shared beautiful stories about tragic diagnoses for their babies who then were born perfectly healthy and never had a trace of problem or disability. Deep in my heart, I had a feeling that these stories would provide only false hope if I held onto them too strongly. But there is and was something so profound about women sharing their stories of loss, hardship, or even hope. It never comes back void. I remember in particular, one of my students mom’s (shout out Anne Finn 😉 encouraged me to get a second opinion and that I should consider having an ultrasound/consultation at Mott Children’s Hospital at the University of Michigan. After some prayer and consideration, Erik and I agreed that it could prove beneficial so we made the appointment.

While we waited for the first appointment at Mott, the consulting doctor at my “home” OB practice called me to check in. He wanted to know if we had more questions and then he launched into an in depth explanation as to why I should abort my baby. “I don’t think you understand the level of difficulty that you’re looking at. We’re talking wheel chairs, feeding tubes, etc.” I can’t remember all of his arguments, partially, because I was so floored that he would have the guts to call me and make such bold statements, but partially because they did not matter to me. I ended the call as quickly as possible blood boiling) and subsequently, Erik and I ended our care at that office for the remainder of the pregnancy.

Our first trip to Mott Children’s hospital felt so weird. Leilani babysat Annabelle for us again and rather than driving to our small town medical building, we made our way to Ann Arbor, parked in a tall multi-story parking garage, had to do screening questions before entering the high rise hospital, and boarded an elevator to head to the perinatology and high risk pregnancy wing of our floor. It felt big… and medical. We went into an exam room with several doctors and counselors to begin our appointment. I don’t remember all of the details of that appointment, but I recall very clearly one of them asking if anyone had discussed my “options” with me. I immediately responded with, “I don’t know what you mean by ‘options’ but terminating this pregnancy is not an option to me.” And that was that. No one ever brought it up to me again during the next four months of my care with Mott. For the first time, I felt like my doctors heard me and we moved forward. I also explained my hesitation on the amnio and they were again respectful of my wishes. Just for some perspective, having a trisomy baby is a 1/2,500 chance. Accidentally terminating the pregnancy or causing harm to the pregnancy due to complications of an amniocentesis is 1/1,000. I was not willing to continue playing the odds.

I was appointed a specific counselor who would help me schedule all of my specialist appointments. I cannot remember how many times I sat in her office and spoke with her on the phone. She was my life-line at the high risk office. This counselor also recommended trying a new procedure that was still in trial stages while I was pregnant with Sebastian. The procedure includes a typical blood draw from my arm and from it they are able to determine chromosomes from the baby. Because it was still new and in trials, they were unable to consider the findings official and so all of our preparations for the baby would still be in the hypothetical. While everyone wanted an official diagnosis to move forward with plans and procedures, I knew that facts on a paper would not change the outcome of preparing for our baby and his long list of disabilities. Eventually, our results came in that our baby “unofficially” had trisomy 18.

After this unofficial diagnosis, the doctors and my counselor recommended that we look into and find some trisomy support groups for parents. This information was very hard on Erik. We looked up some groups and found images of kids in complex wheel chairs. Most of them immobile, non-verbal, and all facing severe challenges and disabilities. It’s hard to see images like that and think that that could be our future with our son, but deep in my heart I knew that God would give us the grace and strength to go through it if that is what He had planned. I knew it would be far from easy, but I also knew that we could do it if that’s what God appointed us to do.

Alongside the trisomy 18, we were also aware of a very serious heart condition. My counselor set up an appointment for me to have an echocardiogram of the baby’s heart. For yet another appointment in the high rise hospital, we left Annabelle with Leilani and took the elevator to another floor to have his heart checked. I don’t remember how long the whole thing took, but I remember watching the blue and red blobs moving abnormally on the screen for sometime while the doctors took the measurements and tracking what they needed to get a full scope of the defect. After we got cleaned up from the echocardiogram, we had the official meeting and discussion of the diagnosis and how to proceed. It was determined that the baby had a congenital heart defect: a hypoplastic left ventricle which basically meant that the left side of the heart was severely underdeveloped. There were obvious issues right away that we were trying to prepare for including the stress of the birth being too much for his heart to handle and whether or not he could even survive that. If by some miracle he was born with a heart beat, we talked about the first and essential surgeries that he would need in order to survive. There was a minimum of four heart surgeries that he would need in his first couple years and even then, there were no guarantees. They told us how we would have to be careful in spacing the surgeries out properly as well so as not to put too much stress on him and allow him to recover between without leaving him in a dangerous place from a functioning stand point.

By about six months into the pregnancy we were averaging about one appointment a month. One part of our appointment was a standard OB heart beat check, pee in a cup, etc. And then they would double us up to also meet with a specialist. By the time by care there had come to a close, I joked that I had visited nearly every floor of that high rise hospital. Every time, Leilani would watch Annabelle and Erik and I would make the drive down to Ann Arbor together.

One of the more challenging appointments/specialists we saw was hospice/palliative care. The idea of setting up hospice care for a child is unfathomable, and yet there we were. I prayed about this appointment for days (maybe weeks) in advanced and one of the things I always prayed for before an appointment was the peace of the Lord to be over me so that I could listen well, understand the information being given to me, and respond in rational and gracious ways. I frequently told my younger students at the dance studio that it was as if I had “Jesus bubble wrap” around my heart that allowed me to be calm in these moments. This particular meeting with the hospice specialists was not in an exam room but in a meeting room. There were several medical students in the room (after my approval) and an older doctor who clearly had lots of experience in the matter. We had to make plans as to what would happen if the baby was born with a heart beat (again, the likely-hood of a trisomy 18 baby being born with a heart beat is only about 50%). They talked about revival techniques that would be used if he passed during delivery. They talked about feeding tubes as he would be unlikely to have the ability to breast feed due to his disabilities. We discussed how long the baby would need to stay in the hospital and what kind of condition he would have to be in in order to be discharged from the hospital and allowed to go home. Our apartment would need to be fitted with equipment and machines and possibly have nursing staff in and out on a regular basis for the first months. Normal trisomy babies would likely not have this level of grim preparations, but when paired with his heart condition, there was no honest preparation for long term life with Sebastian.

It was also around this time that we were preparing to move into our new home. Before we had ever received the first official clue that something was wrong with our boy, we had signed a contract with a company to build our very first home. Sebastian’s due date was April 28th and as the date approached and the house building progressed we had to weigh out how to prepare for him at home. I remember speaking with friends and praying about whether or not to make a nursery for him in our new home. The thought of spending all kinds of time putting together a beautiful room and then, it possibly sitting empty scared me. Then I remembered the parable of the two famers who prayed for rain. One went and prepared his fields to receive the rain and the other just kept praying. God sent the rain to the farmer that prayed and believed. So it became my position that we would prepare for “rain”. We would prepare our home for a miracle; for life.

The dance studio that I work for is really more than a dance studio, it is an incredible community and often times family. One evening after classes had finished, the students, parents, and staff “showered” me in blessings. Each one had selected scriptures to share, written out prayers, and/or blessings and covered the room. Many people gifted us in various ways, and even though some of those things may have felt weird or uncertain, it wasn’t about the actual gifting. It was the community of believers coming together to be the body of Christ and love on me, our sweet baby, and the rest of my family. I still have that stack of blessings in a box with other items that help me remember that time with my boy and how God carried us through it.

I cannot tell you the number of times that I was prayed over during the pregnancy. We prayed for healing, we prayed for miracles, we prayed for strength, we prayed for wisdom. In addition to the other things I had mentioned praying for but also so that we may be a witness to all of those that we encounter. Even during that time, I knew that God had a plan for Sebastian and for our time and journey with him. Admittedly, I have never had a clear vision about what that plan is/was but it doesn’t stop me from trusting the Lord with that. I need not understand, just to follow and obey. That is in part why I share his story, because I feel prompted by the Lord and that He will do with it what His perfect plan accounts for.

One of the many people who prayed for me and mentored to me during that time was one of my dance student’s mothers. She had shared with me the experience she had in delivering a stillborn and all that comes along with it. Although she was at least a decade older than I, she gave me the recommendation to call a local funeral home that she had worked with and shared how wonderful and generous they were to work with. Despite the fact that no one wants to think about funeral preparations for their baby, I was relieved to know that there was a place that not only was capable of handling such a delicate situation, but also had experience in it.

One Wednesday morning when I was about 36 weeks pregnant, I woke up and started my normal morning routine with Annabelle. Very early on though, I noticed that I was not feeling the baby’s normal stretching. All of my kids really showed their personalities, even in utero. Annabelle was a fierce kicker, and Sebastian would take these long sweeping stretches. He never really kicked, he never really wiggled, he was a stretcher. But that morning I could not feel his stretches. I called Erik at work to voice my concerns and very quickly he shared my concerns as well. We agreed that we would give it just a little bit longer and then call the doctor if nothing changed. Finally, that afternoon, I could feel the wide sweeps of his arms and legs again and my mind was temporarily put to ease.

Amongst the other myriad of issues we were facing and all the difficult ways we had to prepare, one that remained a little strange was that they were unable to determine gender during the course of the pregnancy. Our doctors had informed us that we should prepare a girl name, a boy name, and a gender neutral name in the event that the gender was undeterminable due to the birth defects. On our way to a check up at 37 weeks Erik and I had settled on Sebastian as our boy name, possibly Giselle for the girl name (although neither of us believed it would be a girl), and Parker as a neutral name. I remember stopping at Panera to grab lunch on our way to Ann Arbor while Annabelle was at home with Leilani. So many things about that day are clear to me. It was supposed to be a very basic OB appointment where they take my blood pressure and check the baby’s heart beat. I was not in my normal room with all of the extra screens and fancy tables, it was just a normal exam room; one I’m assuming normal pregnant patients would visit every time. I laid on the exam table with my belly exposed while the nurse glided the wand around to find our little guy’s beating heart. After some time and lots of attempts, we became increasingly nervous that she was not finding a heart beat. The nurse assured me that she could also feel his stretches and movements and that she was sure that everything was fine. A couple minutes later she decided to leave to get a portable ultrasound machine to facilitate the process. She disappeared for a short time and when she returned she rolled in the cart with an ultrasound machine on it. It took no time at all once the wand was on my belly to see my boy and to see that there was no activity. No heartbeat. It hit like a ton of bricks and yet, somehow far from surprising. In some ways, I think the nurse was more surprised than I was. Shortly after, she left the room to notify the proper chain of command and determine next steps. Erik and I sat in the exam room stunned and almost numb to the news.

Just several weeks prior, a friend and mentor at the studio had come across an article in the magazine of a convent she was associated with. The article was about sweet baby Rosemary and how she had been born with trisomy-18. It explained the process of bringing her home and the palliative care takers and machinery involved in helping to sustain her precious life. The thing that stuck with me the most was the mother’s account of Rosemary’s passing. She could see her breaths growing increasingly shallow and less frequent. She held her and comforted her as her sweet baby of less than a couple months passed in her arms. As I read this, I just balled and thought, “I could never be as strong and brave as this mother, I don’t know how I could possibly handle watching my baby pass in my arms.” Ultimately, I knew that God is the provider of such strength, but I prayed emphatically, that he would have mercy on my tender momma heart and give me another way. As we waited for the doctors to come to the exam room to discuss what lay before us and the next phase of our journey with our boy would include, my thoughts went to sweet baby Rosemary. I wished with all my heart that I would be able to hold and kiss my sweet boy, but relieved in some ways that I would not have those interactions and then watch him go. The exchanges between Erik and I at that time were fairly minimal but we certainly had similar sentiments. When you have been in a place of uncertainty for so long, sometimes even bad news feels like a relief. Hard answers to questions that had been lingering for so long were finally there and it was a mix of sadness and release. When the doctor arrived she gave us her condolences and told us to go home to our daughter, take the evening as a family, process the day, and return the next to begin the labor induction process. I was so grateful to her and her perspective on the situation. We definitely needed time to process and it was so good to go home to see Annabelle before the induction began.

In an effort to make life simple for us, we ordered carry out from a local Thai restaurant on our way home and picked up dinner for the three of us. After our meal together, we put Annabelle to bed like normal and I began the process of packing my things to spend an unknown amount of time at the hospital. The plan was that in the morning, my mom would come over and stay with Annabelle while Erik and I headed to the hospital. Unfortunately, not much of that worked out as we had hoped. In the middle of the night, I heard Erik wake up and rush to the bathroom where he proceeded to vomit excessively. Immediately, my heart sank. It turned out to be food poisoning from the dinner we had picked up the night before. Fortunately, neither Annabelle nor I were affected. But that certainly derailed plans. We discussed options and made phone calls and ultimately it (totally in a God kind of way) worked out that my mom would still come watch Annabelle while Erik was sick and my sister (who was about eleven weeks pregnant at the time) would leave her husband, one-and a half year old, and drive across the state to go to the hospital with me. I’m still grateful for the sacrifices everyone made to be there for me that weekend.

By the time my sister reached my apartment, it was mid afternoon and we then drove to the same hospital where I had received all of my prenatal care for the prior four months. My bags were filled with a change of clothes, my Bible, a couple devotionals, hand written notes and scriptures, the stack of “blessings” from my studio family, and blank thank-you notecards for me to write during my downtime. I remember sitting in the lobby of labor and delivery with my sister by my side in my teal sweats waiting for my room to be ready filled with strong twinges of anxiety uncertain of what the next couple days would hold – and yet, in some ways totally certain. After what seemed like an eternity in the waiting room we were taken to the hospital room where things would get underway. There were several doctors and nurses that all popped their head into my room, gave me a quick analysis of how they thought things should proceed for about the first hour. No two doctors had the same method of delivery/induction, but there was one thing that remained true amongst all of them; the concern of the stress of an induction on the scar I had from a C-section less than two years prior. The second complication was that Sebastian was breech. One doctor suggested a C-section right away and that everything would be done by the end of the day. Several doctors advised me though that if I wanted to have more children that the safest and best option would be to go through an induction process and deliver V-BAC (Vaginal Birth After Cesarean). After listening to what seemed like way too many differing opinions from way too many professionals, I received the official word that I would be delivering V-BAC after a long and slow process of induction including many methods that are not traditionally used due to the unique nature of my situation.

As the doctors and nurses explained the induction process to me, I just felt sick. After all that I had been through on an emotional front, I was looking down the path of what felt like scary, painful, and long journey. If you are one that gets woozy from medical/blood/guts things, you may want to skip ahead. My induction process would begin with a shot of morphine, then a series of numbing shots in my cervix and an insertion of seaweed laminaria (lams as the medical staff called them) to begin the dilation process. In total, I went through this process three times; morphine, cervix shots, and insertion of lambs. There was generally about six hours between each procedure in which my sister and I would watch movies, chat, and catch short stints of sleep. After one of the procedures in the middle of the night, the staff was cleaning up and getting ready to leave. During the shift, my sister got up to use the restroom (in my room). When she exited the restroom, she collapsed onto a birthing ball (grace of God that it was there to cushion her fall) and passed out. Quickly the staff pivoted and began helping her. Feeling totally, helpless and strapped to the bed, I watched as they pulled her up and began to check her over. I just kept yelling “she’s pregnant! She’s about eleven weeks pregnant!” They quickly whisked her out of the room and took her to triage to run some tests and put her under observation.

I just remember laying in that hospital bed all alone, and thinking “Lord, if you wanted to check and see where I put my faith and my reliance, it is now more than ever on you alone.” I had no other voices speaking words of encouragement to me, no hands reaching out to hold my own, or even to sit and simply keep me company. I was so very aware that I needed to rely on God alone to carry through me that incredibly difficult time. And it’s true that when we cry out to Him that he hears our calls and comforts those who mourn. Even then, I was not riddled with fear or desperation. He draws close to us in those times and I could certainly feel it then.

Some time later, my sister came back to the room after they ran all the tests and made recommendations. There was no clear answer as to what happened, but she was feeling well enough that she came back to stay with me again. Sometime in the morning though, Erik was feeling well enough that he was able to come to the hospital and relieve Jen to go home to her family.

At some point while I was alone in my room, during one of my highly unpleasant procedures a nurse grabbed my hand and asked if she could pray with me. Stunned, but grateful, I obviously agreed. Being that I was at the hospital at the University of Michigan, and not any kind of Catholic or Christian establishment (or even moderately conservative) I couldn’t believe that I had a nurse openly offering to pray with me. Later, I asked her about how she knew I was a believer or that it would be “safe” to ask such a thing. She told me that she saw my devotional (which had been gifted to me at my Shower of Blessings) sitting on my side table and that she had the same one. This same nurse later in the day shared with me the story of her still born baby. She told me about how her baby’s birthday still was a big deal to her and that even thirty years later she would still take the day off of work to honor the day and reflect on her baby’s birthday. I was in awe that God would bring such an insightful and faith-filled woman into my path at such consequential time. If you’ve ever heard the phrase “divine appointment”, this is a perfect application.

I don’t remember much about the time from when Erik arrived and the time that it came that I was dilated far enough to receive and epidural and still labor slowly and awkwardly. I know that at some point late that evening my water broke and knew that our boy’s arrival wouldn’t be far off.

Sebastian was both tiny in size and breech so he was born feet first. I actually think he started his exit before any of us were ready and because my epidural turned up so high, I wasn’t feeling much of anything. After discovering his “approach” my nurse called in the rest of the team to begin the delivery process. It was the middle of the night and the room was filled with doctors and nurses. The nurses would watch the monitor tracking my contractions and tell me when to push. The times between those contractions were awkward and quiet. There was a heavy and somber tone that hung in the air. No one made eye contact with anyone. No one spoke with the exception of minimal push coaching according to my contractions. Now, after having two other V-BACs after Sebastian and knowing that experience and all the excitement and words of encouragement during the process, the awkwardness and melancholy tone of his delivery stands out to me even more.

Even though the delivery process did not take very long, it sure felt like it. But before we knew it, they had cut the umbilical cord, confirmed that he was a boy, and wrapped him up. They handed our motionless little bundle to Erik and I to meet and to hold. We welcomed Sebastian Thor Graney, lifeless, into this world on April 8th, 2013 around 2:30 AM. He was such a tiny little guy, the blanket he was in swallowed him up. The range of motions one experiences in a time like that is shockingly broad. I was so grateful to see his little face and hold him. He was not exactly in pristine newborn condition one would expect due to the time lapsed between his passing and his delivery. Still, there is no love like a mother’s love. We asked for a photo to be taken of us holding our boy to commemorate our short time with him in our arms. I didn’t know whether to smile, cry, or just be. It was an incredibly overwhelming time.

Once we gave the nurse the go ahead, she took him for a special time that the hospital does for all stillborn babies. They took prints of his feet, weighed and measured him, gave him a special blanket and hat and photographed him in said items. They put together a keepsake box for him with all of the items including the hat and blanket. First they brought him back to the room where I held him just a little longer and when exhaustion had set in I asked for him to be placed in the bassinet in the room. He laid there in the dark corner of the room, no warming lights, no pacifier, none of the things newborns are fussed over with. Later in that same morning, the time came to take him to the morgue where the funeral home we had contacted ahead of time would pick him up and prepare him for the service.

After he was gone, the nurse brought the box of keepsakes and the photos she had taken to my room. I opened it and cried quietly in my hospital bed still processing everything that we had been through in the previous days and even months to lead us to that point. Shortly after that, my mom brought our sweet *not quite two year old* Annabelle up to the hospital for a visit. It was Monday late morning and I had been in the hospital since Saturday afternoon. It was incredibly comforting to see my sweet and silly girl running around, playing with the phone, and bringing some much needed life to the hospital room. That afternoon after my mom had already taken Annabelle back home, I was cleared for discharge and Erik and I packed up our belongings and made our final trip to the same parking garage we had used for months in preparation for this very time. There are no words to describe the feeling of leaving the hospital with empty arms. Almost hallow.

In the subsequent days, we met with a pastor whom we did not know very well at the time but we had just started attending his church. Sadly, we did not have anyone else that we felt was in a good position to give a service in honor of Sebastian, so we put the heavy task on this man that barely knew us. Thankfully, we went on to become church members in his congregation and was under his pastoral leadership for the next seven(ish) years.

I remember preparing for one of our meetings at the previously mentioned funeral home, standing in my bedroom in our tiny apartment trying on outfit after outfit. Erik came in and asked what I was doing. I broke down crying, “Everything I put on, I still look pregnant.” It was not a cry of vanity, it was of heart break. I looked pregnant and yet had no baby. Before we left, we went through many of the items that had been gifted and made for our boy. With Annabelle’s assistance, we chose one blanket and one stuffed animal that would lie with Sebastian. On our way to the funeral home we stopped to purchase a preemie sized outfit as we knew that anything else would be far too large for our little guy. At the meeting, we discussed details of the service, use of the facility, the grave site, and burial. When he showed us photos of the infant sized coffins, I broke down again. I’m not sure I’ve ever seen a sadder thing – the fact that they even make such a thing. It’s horrible and merciful at the same time. It was at that time that the man behind the desk informed us that they would be gifting us the tiny white coffin for Sebastian as well as the complete use of the facility and essentially everything with the exception of the grave plot and head stone. I was just overwhelmed with gratitude – I could hardly comprehend their generosity and compassion.

On the day of the funeral, Erik, Annabelle, and I arrived early so as to have some time to go through some of the flowers and gifts that had been sent and to have a private moment with our boy even though he was in a closed casket. During that time, Annabelle said something and Erik and I both asked her to repeat it. She repeated herself, referring to seeing Jesus in the funeral home. When we asked about it, she simply pointed to an empty chair on the side of the room and said He was there. I smiled and casually looked to see if there was any kind of photograph near the chair, or crucifix, or something. But there was nothing there that either Erik or myself could see that she was referring to. We had no further dialogue on the subject, but Erik and I both had a small tear in our eye thinking about what it was that our daughter had possibly encountered that morning.

Several family members came in from out of town to be at Sebastian’s service. Tons of local friends and family filled the entire wing of the funeral home to celebrate his life and lend their prayers and condolences. I was shocked by the sheer number of people that came and shared that they had been praying for me and my family. I started to see the tip of the iceberg that was the amount of prayer warriors lifting us up across the country! People I didn’t even know, praying for us at someone’s mother’s cousin’s Bible study. I was completely humbled. Our soon to be pastor, Jeff, gave a beautiful and short message honoring our boy. The worship pastor from Jeff’s church (who later became wonderful friends of ours) the Haglund’s sang two songs we had selected ahead of time: Amazing Grace, Erik’s all time favorite. And It is Well With My Soul – which makes me well up with tears every time I hear it to this day. Because it is true, although I cannot explain God’s plan in all of it, I trust Him and that is enough to ease my soul.

Following the service, my dad and brother carried our tiny coffin to the hearse and a small number of us drove to the grave site in a nearby cemetery. Two things I loved about Sebastian’s plot; 1. It’s under a big beautiful tree cozy and protected 2. It is a special area in the cemetery for small children and infants. I felt like he was with his friends. Surely, other kids he would play with and befriend in heaven. ❤ As one would imagine, it was a cold and rainy Michigan day in April. Much to be expected. The time at the gravesite was short and surrounded by mostly family and some close friends. Following the burial, my cousin (who had been at the hospital the first day we got the news) hosted a lovely wake at her home. It happened to also be my nephew’s second birthday and I think of their connection every year when we celebrate. My sweet friend Leilani got a special balloon for Jackson for his birthday and for Annabelle and the rest of us had blue balloons which we all released “to heaven” outside at the wake as a final good-bye.

At the time of writing this, it has been eight years and six months since we lost our boy. I still think about him every day and in my family, we talk about him just like he is a regular family member. When my kids are asked in school (or any where really) how many siblings they have, the will more often than not say that they have two siblings plus one in heaven. It’s actually one of the harder questions people ask me, is how many kids I have. I was in a Bible study several years back and on a *not so random* chance we found out that in our group, we had all lost a child. One from a car accident as a young adult, one just a child from complications due to special needs, and us with Sebastian. One of the most profound things I heard from my fellow grievers was that although [they] looked like a family of three, they were in fact a family of four. I frequently think of that. Although the majority of the world sees the Graney family as a family of five, soon to be six. We are in fact a family of six, soon to be seven. Just because Sebastian is not here in my home for me to watch grow and teach, he is no less my child. I have actually found that the majority of the time I choose not to bring up Sebastian, or my true number of children, it’s not to spare me anything. I think about him all the time and he is my boy that I love. Usually, I keep things to myself because I know that it makes others uncomfortable to discuss my deceased baby. They feel like they need to say something profound or just awkward at the mention of such a tender subject. On a whole, however, I have found that if you know someone with a loved one that has passed, it is far better to mention him or her than to not.

I have friends and family that talk about having a feeling of “completion” when they are ready to be done having children. I tell my kids that God has a special number for every family and that each family is unique in the way He has created them. I have been pregnant six times now. After suffering a miscarriage in early 2021, I am now pregnant in my third trimester for the third time. Sometimes I wonder if I will ever have that feeling of “completion” that I see in others. My family may never feel complete to me in my heart of hearts because I know that all of my family is not here with me.

One of my prayers throughout this entire journey was that God’s will would be served out through this and that I would find purpose in Sebastian’s life and story that would glorify his Creator. Truthfully, I don’t know if I will ever see the full scope of the impact Sebastian’s life has had on the world (this side of heaven) or that I will ever see the beauty from our pain, but I consider it my duty to continue to share about him and our experience and the rest I will leave in God’s hands. About a year ago, I received a call from the University of Michigan perinatology department asking me to answer some questions about the experimental genetic testing I had done and how it impacted our experience with our high risk pregnancy. I shared both facts and emotions with the young woman conducting the research and at the end of our interview she told me how touched she was to hear about our experience and that she was very moved by Sebastian’s story. Even if just for research sake, I know that our little bit of sharing can impact future mothers who are currently or will be in my similar situation and I pray that it will help them in their journey as well.

If you have lost a pregnancy, delivered a stillborn, or lost an infant, know that you are not alone. Sometimes it feels like such a dark and heavy secret to carry but it doesn’t need to be a secret and you are most certainly not alone. Know that your little baby is very much your child today and forever and regardless of how big or little your family appears, you know that you have a precious deposit in heaven waiting for you.