Life After Loss
(This post has been extremely difficult to write (causing delay in publishing) and contains raw and honest feelings that may be disturbing to some readers.)
The passing of Stetson caused my emotions to run on hyper drive. Everything I felt seemed to be heightened. I frequently felt anxious. I didn’t have the opportunity to relax but instead had to fill my days with planning and arranging his funeral. I felt like I couldn’t breathe and I felt flustered and unable to explain what I needed help with and what duties I could delegate to others. Although I had made some funeral arrangements before Stetson was even born it was now time to iron out the finer details.
Stetson’s funeral would be my first funeral I have ever attended. I grew up experiencing very little loss. I have only had one family member (a cousin) pass away in my lifetime and I was unable to attend the funeral. I had no expectation of what is appropriate or what is traditionally done.
Levi and I knew the first thing we had to do was plan a date. We knew we had to plan the funeral for a weekend to ensure the attendance of as many family members as possible. I felt uncomfortable knowing that Stetson’s body was in some giant wall cabinet like the movies or laying on a gurney in some dark cold room. I wanted him placed somewhere that felt intentional, not placed like storage. However, the weekend following Stetson’s death was General Conference and Easter. I really liked the idea of celebrating Stetson during the time of Jesus's resurrection but it also seemed rushed. I hated having him “stored” until the funeral but in the end we decided to have the funeral the weekend after Easter to make sure the funeral was as beautiful as we envisioned and to ensure the family could make arrangements.
One of my sisters decided to stay until the funeral to help with planning and to watch Georgi while Levi and I made arrangements. Levi and I first set up a meeting with the funeral home to get the finer details arranged. On the drive there I anticipated seeing Stetson. I wanted to hold him again and see his sweet little face and spend some time with him so he wouldn’t be in a cold dark room.
The first thing the director said was his condolences and then he mentioned several times how cute Stetson was. The meeting was short. Just arranging the date and time of the service. We were also given an outline or template to help me understand how funerals are traditionally done. After the meeting we asked if we could see Stetson. The director said he already had him ready for us in one of the viewing rooms. He said we could pick him up and hold him if we wanted too. Then he warned us that he would feel cold, look gray, and his skin may feel like a rubber doll. The whole time he mentioned this I just thought it wouldn’t be much different than when Stetson was at home before the diener came. But, I was completely wrong.
When we walked in the room I rushed over to the table to see Stetson and immediately my heart jumped into my throat. He wasn’t gray, he was white. His face looked uncomfortable with his lips slightly pursed and tight. His skin was sunken in and no longer plump. I didn’t recognize him. That was not how I remembered my baby. I stepped back from the table and tears filled my eyes. I looked at Levi and I said, “That’s not my baby, that’s not my baby.” Levi looked concerned and worried. I’m sure he said something but I’m not sure what it was. I kept backing away from the table and I said, “I got to go, I can’t stay here, I need to go.” I rushed out of the room crying Levi following behind me.
I now understood what people say when they don’t feel like their loved one was there anymore. I couldn’t feel Stetson. I was expecting him to look like he did when he was gone at home. I wasn’t expecting that. I sat in the truck crying trying to explain to Levi that I didn’t recognize him. I shared that I thought he would look the same as he did when he was at home. I wasn’t expecting him to look like a stone, no variation in color at all. He looked old; His skin was tight and sunken. His spirit was clearly gone. Levi listened intently then gently encouraged me to come back in and see him. He told me that it was just Stetson’s vessel, his body. It was no longer housing his spirit but it was Stetson’s body.
After a while Levi managed to get me to go back to the viewing room. We held hands and walked in together. Levi talked to the director and told him that it was an unexpected shock but that we were better prepared now. The director again set the room up for us and left us alone. Levi asked me if I was okay with him picking Stetson up. I nodded yes. As he did Stetson looked bigger and seemed like he was heavy in Levi’s arms. Levi cradled Stetson in one arm and with the other pulled his quilted yellow blanket down to reveal the tied off central line he had. “You see, it's Stetson, it's your baby.” I looked at him knowing it was Stetson but still unable to recognize him. Levi asked me if I wanted to hold him. I shook my head no. Levi rocked him for a few moments then set him back down. I examined Stetson still looking for something to feel familiar. I adjusted his blanket around him and noticed that he had what looked like a thick string lacing his body closed around his groin. Levi mentioned that it was a bit unexpected to see but we both knew it was from the preservation process. I wrapped the blanket around his cold clammy body and bent down to gently kiss him. It felt different, like kissing a doll not a person. As I did though I smelled him. At first all I could smell was chemicals but very faintly I could smell him. It was so incredibly subtle but it was there, the smell of my baby boy.
When we left I still felt shaken up and I knew I wouldn’t come back to see him again until the funeral. I was imagining a tender moment seeing the vessel that once held my baby’s spirit. But it wasn’t that way and it didn’t feel tender, I hated that this was the most recent memory of my baby. It was bad enough that I had to see and watch him pass. I have images in memory that have left literal scars on my mind. I wish I didn’t have them and I wished that I could focus on moments that were sweeter, when he was alive, when he was sucking his fingers or when we were doing skin-to-skin. Those memories seemed distant and I struggled recalling them.
Georgi ended up getting sick over the weekend. Causing Levi and I to stay home missing conference and Easter celebrations with cousins and my sister. We managed to let Georgi have an Easter egg hunt in the house. We even had one large egg filled with her favorite goodies. We told her Stetson had the Easter bunny leave it for her. We ended up staying in the house watching conference and indulging on Easter candy.
Conference wasn’t what we had hoped for. I was hoping God would directly talk to me and give me comfort for the loss we were experiencing. Perhaps I would feel differently now, having more time to process. However, at the time of conference I felt angry and disconnected from God. It seemed like every message didn’t apply to what I was going through or how I was feeling. Covid seemed to be at the heart of conference and again I became angry that the pandemic seemed to overshadow other hardship, other life. Levi felt similar, disappointed and angry.
As the week went on we gathered photos, small little blurbs of family sharing what it was like to hold Stetson. I had someone make Stetson’s clothing because he couldn’t wear pants but I wanted him in something that resembled a suit, not some ancient/old fashioned christening gown. I felt on edge and anxious most of the week. I didn’t really have the opportunity to grieve because I was so focused on getting to the next step of laying Stetson in his resting place.
The Morning of Stetson’s viewing my sister sent a message to the family. I opened it and saw a picture of her in the hospital with a fresh beautiful baby lying on her chest. I thought I would feel sad or depressed missing my baby but I didn’t, I felt so happy for her. I decided that I would privately message her letting her know that I didn’t want her to feel like she can’t share pictures of her new baby with the family because she was worried about how it might make me feel.
My parents were already in town and they took care of Georgi while Levi and I gathered boxes to fill with framed photos to decorate the viewing room with. Before we left I decided to have my mom come and help set up.
As we walked into the room I could see Stetson’s body wrapped in his knitted yellow blanket. I held my breath as I walked over to the gurney. Looking down at him I still felt like I couldn’t recognize him. He had makeup on, which made him look more like he did when he was alive. However, I felt strange. I didn’t think I was looking at a person but a doll. It's strange looking at a body that once housed a spirit and feeling no presence of that person anymore. It was empty and strange. As I was looking down at him I felt my mom come and put her arm around me. I didn’t cry, I don’t think I could have.
Levi and I dressed him. I had a gown that looked like a dress shirt made for him because he couldn’t wear pants. The gown was a pastel blue pin stripe with white buttons. I was given a white vest that was actually part of my little brother's blessing outfit to go along with the gown. I finished it off with a bowtie I had made. Levi and I carefully placed him in the blanket we had blessed him in and then laid him in his tiny casket.
Georgi and Stetson had received stuffed animal sheep from a friend, one purple and one white. Georgi had given Stetson the white one. I laid the white sheep at his feet along with one of his orange binkies and a necklace with the “I love you” sign.
We decorated the hall with pictures of Stetson’s life and our family. When the hall was complete we went home to change only to return an hour or so later. Family, friends, and church members came to give their condolences. It seemed strange and I wasn’t sure how I should feel or act.
After the viewing came to a close Levi and I left our babies body alone in the dark hall. We didn’t say much to each other on the way home. We just held hands. The only discussion we had was deciding to stop and get dinner. When we walked into the restaurant the people at the counter complimented our outfits and asked us what the special occasion was. Levi and I looked at each other not really sure what to say. I said we had came from our son’s viewing while Levi said, “we are celebrating our son’s life”. The servers got quiet and when we came to the cashier the employee said, “it's on us tonight.” Levi and I thanked them. They probably don’t know how much that small jester meant to us or the impact it made but we were so grateful.
The next day was the service. It was just a buzz of people getting ready. It was busy and scheduled. There was little space to think about anything but the schedule and the events that would take place. But I didn’t feel sad. I felt calm and happy of all things. Family and friends from near and far all came to celebrate Stetson’s short life. Throughout the service and throughout the day I rarely cried. I actually felt guilty for not crying more. But I was at that time calm and at peace.
It wasn’t until I spoke that I cried. I know it’s not traditional to have such a close family member to the deceased speak but I felt like I needed to.
“I’d first like to say thank you to all that have joined us personally and virtually. We appreciate you all coming to help us celebrate the life of our baby boy Stetson. We have been truly blessed to have so many people come and donate funds, their time, and their talents to help carry us through this trail.
Stetson is one lucky little boy to have so many people, some of which we don’t even know, remember him and know who he was.
When I had Georgi I remember getting excited for all the little milestones she would achieve. All the “first” I’d get to have with her. The first she’d give a social smile, the first time she’d laugh. The first time she would roll over, sit up, or crawl. The first time she’d say mama. All these little seconds in time is what you anticipate as a parent. What I do have are memories that are paired with pain and heartache. But they are still beautiful.
I don’t know what it was like to be him. I don’t know the pain he felt or the stress he went through emotionally or physically. I don’t understand why his life was this way and I don’t understand why Levi and I were his parents. Some may say it's because we are strong or brave but that’s not true. Stetson made us strong and he made us brave.
While at church a sister of the ward started her testimony by saying, “I know that God is good all the time.” I want everyone to know I don’t always feel that way but I believe like this sister does. I know God is good all the time.
I’m not angry with God because Stetson had to be so perfect so valiant in the pre-existence that 5 weeks was all the experience he needed. How can I be angry for that?
Stetson had a very short and hard life and it’s a nightmare to witness your child only experience something hard.
When we learned about Stetson’s prognosis those little seconds in time that a parent waits for was stolen from this life. We were robbed of those earthly experiences with him. I didn’t ever see a social smile from him or hear him laugh. I wont get to see him rollover, sit up, or crawl. I won’t get to hear him say “mama” for the first time. All those little moments I won't have.
I remember how excited and lucky I felt when he opened his eyes the first time. I remember how content he looked when we’d take a toothbrush and gently stroke his hair. I remember how some of his mannerisms like raising his eyebrows and wrinkling his forehead are identical to what his dad does. I remember how much he loved his orange binkie and being swaddled. I remember how stroking my finger under his chin would tickle him. I have all these sweet little memories that are shared with moments of bitterness.
I hope and pray that no parent ever has to watch their baby fall apart like I did. But we are so immensely blessed to have had Stetson in our life for 5 weeks when we were told he might not even make it to birth. Imagine what you would do if God asked “what would you do to have an angel live with you for a day?” I got to have an angel with me for 35. Being in the presence of someone so perfect is hard when you are far from that.
The day after he died we went to church. Church felt like such an appropriate place to be. You go to church to learn and feel closer to God and my baby is there with him so I want to do what I can to be closer to God.
Levi and I have been blessed to be sealed in the temple not only as husband and wife but as a family unit. Georgi will always be our daughter and Stetson will always be our son as we keep our temple covenants. For this reason Levi and have cause to rejoice. Though I’m sad, I’m so desperately sad. And I miss Stetson so much but I will get to see him again and not just as an angel but as my son.
My favorite hymn is “O My Father”, you may notice that’s on our program. I love this song because it speaks of our heavenly mother, which is so incredibly rare. It also speaks of our mission of this life is to gain knowledge and experience. Until we can reside with our Heavenly Father and Mother again.
Stetson has blessed my life, complicated my life, and has made me immensely sorrowful and incredibly joyful all at once. For that I’m deeply grateful. In the name of Jesus Christ Amen.”
After I gave my talk there was a musical number “O My Father” then my brother Spencer spoke and the bishop followed. A lot of what they shared talked about how Stetson allowed us to feel more joy and that there will be a day that I will get to raise Stetson again. I’ll have the opportunity to see him learn to crawl and walk, say his first words and develop. At the time I still felt peace but I’m not sure I believed what they said. I of course hope and wish it is true but I can honestly say I don’t know if it is.
At the burial my Dad gave the dedicatory prayer. He prayed that Stetson’s body would be protected and watched over until the time that the resurrection would come and his spirit would return to his body. One day Stetson will return to a physical body and it will be clear of genetic disease and swelling and it will function, as it should.
As our final farewell to Stetson we released white balloons. I felt at peace and I was happy that my little boy was no longer in pain. However, I didn’t fully process that he was gone until a few days passed. All the buzz of planning events for Stetson having family visit because of Stetson, preparing a talk because of Stetson was over. Anything I had to do for Stetson came to an end.
I found myself frequently wondering when I would stop feeling sad when I would feel whole again. The peace I felt at Stetson’s funeral left me and I feel completely broken. I have become discouraged and at times angry. I soon realized that I’m never not going to be the mom who lost a child. I will always have that loss; I will always have a part of me that’s buried in the ground with my son.
I often wonder how to move forward. I feel like every day that I live will never be as happy as it could have been because Stetson isn’t in my life anymore. I feel like I may never feel whole ever again, how could I?
It has been strange having my life go back to the way it was before Stetson came into it. Before I was pregnant. Before Stetson was even a thought. It's like time rewound and he was never here. I’m living a reality that no one else will know or remember. I suppose I fear people forgetting him. I fear I’ll forget him. That Stetson will become a small glimpse of time that becomes drowned by the rest of my life.
I try really hard to think that it will get better. However, it doesn’t feel like it will get better because Stetson didn’t get better. He came into this world destined to die, to live only 35 days and that’s it, nothing more. I’m here and supposed to think “God has a plan for me” or “everything happens for a reason” or “after the storm comes a rainbow” is any of this meant to make me feel better or be okay with the reality I’m living. What a crapshoot!
I didn’t just lose a son, I lost myself. I have had difficult times in my life but nothing has shaken my faith so much. I want to believe that there is a life after death, that I will see my son again. That there is more to life than our earthly existence. I sincerely pray and hope that it is true. However, I can honestly say I don’t know if it is.
However, I try, I try to hang on to the hope that it is and my doubts are just that doubts. Because if I believe otherwise my devastation will consume me and there will be nothing left. I have to hang on to that hope because without it I am nothing.
Levi and I were on the couch talking one night. He shared with me that at times he wished he held Stetson more. I can’t say that I don’t wish the same. I shared that there are times I wonder if we didn’t give him more of a chance that we took his life support away too fast. But then I’m reminded of the difficult nights he had crying because of pain and choking struggling to breathe even with oxygen. I’m reminded that his supports were failing him too. Levi agreed and shared that he sometimes feels that way too but said, “I have to remind myself that I gave my son the same courtesy I would want for myself.” We talked about the pain we feel and how it’s strange having life move forward. Levi said it's like a scar you always have but eventually it won’t be painful just a memory.
I don’t feel that way. I feel like it is worse and I said, “I feel like I can’t breathe and I just won’t die.”
It was then that I asked for a blessing. Levi gave me one and blessed me to have strength and know that there are more spirits waiting to become our children. I felt peace for a moment and more at ease though the feeling unfortunately wasn’t long lasting.
As time has gone on I find myself feeling worse. With each day I feel more loss. As I go about my day I recognize that my life should be different. That Georgi’s life should be different. She should be growing up with a brother; she should have a sibling to smother with kisses and hugs. Wanting to help take care of him and play with him. Instead she only gets that opportunity with occasional cousin visits and playing with friends. Unfortunately, those moments only serve as a reminder of what Georgi is missing. The only memories Georgi gets to make with Stetson is going to his grave leaving the occasional garden decoration, having a picnic, sometimes reading a book. Her experience is a one sided interaction with a person that will become a faded memory.
Although Georgi is young, sometimes others and I forget how losing her brother has impacted her. Georgi may not understand death and she may not truly comprehend what she lost but still she is grieving. It is difficult to help a person in distress when they have no understanding of what it is that they have been feeling.
Georgi has been having nightmares frequently waking in the night crying and running to our room. She often tells me things have died or are dead like when she finds a bug on the ground or is watching a show. It's strange hearing a toddler frequently say “oh it's dead. It has a booboo.” I have realized that sometimes children will “play dead” maybe lay on the floor with their tongue sticking out. Or sometimes we say things are dead when they actually aren’t. For example “I’m dead tired.” Or “the batteries are dead.” Georgi now has an experience with death and her lack of understanding has caused Levi and I to take extra care in how we say things in hopes to try to prevent her from becoming confused or having another mental interaction with the death of her brother. Very few children will have the experience of seeing their sibling dead, Georgi witnessed her brother dying and seeing him moments after he was gone. There aren’t many children who have gone through the trauma she has in such a short amount of time.
Georgi has witnessed her mother being terribly sick while pregnant, living away from her own home struggling to sleep for nearly five weeks. Moved three times in less than ten months. Been tossed back and forth to different homes of strangers while I spent half the day in the hospital with Stetson. She had her brother come home hooked up to machines, unable to play with him or help take care of him. Then watch her brother die only able to be with her for a week. For such a little girl she has gone through a lot.
Levi was given a great opportunity with a company in Saint George. It took a lot of prayer and courage to leave Logan, especially only months after losing Stetson. The hardest part was leaving him. Especially knowing that the only long-term memories Georgi would have would be going to Stetson’s grave. Now she will only get that opportunity a few times a year as opposed to a few times a week.
Levi and I were so distracted by the sudden move with packing we failed to fully explain to Georgi what moving truly meant. We told her we were going to a new house where she would have a new bedroom and she seemed excited. When we had everything packed in the moving Truck (Stetson’s room being the very last thing to come down) I picked Georgi up from her friend's house. I brought her inside and she saw Stetson’s empty room. She stopped and let out a small gasp as she entered his room. She had her arms stretched out on her sides and her shoulders shrugged. She had a dramatic look of confusion as she frantically scanned the room, which turned quickly into a sad lip and tearful eyes. “Awe, my Stetsons” she said as she ran to the wall and buried her face and hands into it. I instantly felt guilt for not explaining to her that his room would be taken down. I had Levi come and help with damage control as we tried to explain to Georgi that we still have all of Stetson’s things and they were not gone but coming with us. Our delayed explanation and Georgi’s tiredness caused her to become clingy, upset, and worried about other things being taken away like her television.
We made sure to visit Stetson’s grave before we journeyed to our destination. We even had Georgi pick out another garden decoration to lay on his plot. She selected a little bird with sunglasses.
When we made it to our temporary apartment (until our house is built) I made sure to have Georgi’s room set up first. Although most of the apartment was in boxes Georgi’s room was done. I wanted to ensure she knew where her space was and she had a physical reminder that this was her home even though it took several days to fully settle in.
Some people have told us that moving may help us with our grief and may give us a “fresh start”. This is a completely naïve assumption. I don’t have a fresh start to anything. It’s true that I have to start anew with friendships and becoming familiar with a new place but my grief isn’t suddenly minimized by not being in Logan if anything it’s maximized. I had no idea how therapeutic it was to actually visit Stetson’s plot and leave little gifts until I moved. I have been told “you know Stetson is wherever you are” this may be true but his body is still in Logan and I feel an incredible reasonability to ensure that his grave is taken care of and maintained. The ground there holds a sacred vessel and I want it to look like it is loved and visited.
Since moving I haven’t set up Stetson’s room. It doesn’t make sense, he never lived here and setting it up wouldn’t help me feel like it is his. It’s been hard leaving a place that holds sacred memories even if they are difficult ones. For now, I leave his pillow with his clothes on it out, settled on my nightstand. It might seem silly but it fell off the nightstand one night and it made me upset. I picked it up and carefully set it back in place. As I did I picked up his clothes and held them close and cried. It sounds stupid to get so emotional over something so insignificant as his clothes falling off my nightstand but it’s all I have left of him.
My life has felt so strange. There are times when I just lay in bed thinking to myself “I can’t believe this is my reality.” I’m a mom who lost a child. I lost a huge part of myself and every time I think about having another baby I become angry. I’m angry because I miss Stetson and I just want him back. I’m angry because I can’t just have a baby in any sense. I had to do fertility to get pregnant with Georgi and Stetson. Nothing as dramatic as IVF or IUI but fertility nonetheless, But the next time will be different. I can’t even stomach the thought of rolling the dice in hopes that we won't have another baby with galactosialidosis. It's too much for me to take in. Levi once said, “seventy five percent chance is still really good odds.” I responded, “Stetson had those same odds.” I feel torn and angry with my options. If I discovered I was pregnant with another baby like Stetson I wouldn’t terminate early. I’d go through the NICU and hospice all over again but of course I want to avoid that chance at all cost. I’m left with IVF doing genetic testing before implantation or adoption. Both options present themselves with a slew of pros and cons and I’m not sure which is right for our family and what I can mentally handle. Every time I think about it I just become increasingly upset. I just want Stetson back. Have I not suffered enough? Has our family not sacrificed enough? I know there are many who have suffered more than me but I just don’t understand why I have to go through this. I lost my baby and I feel like I lost the opportunity to have more children of my own. I feel a great obligation to Georgi to give her siblings but I also feel like I can’t risk having more children. I just wish out of all we’ve been through we could have a simple answer to something.
I have been met with people telling me things like “at least you can have children.” Or “Just remember God sacrificed his son.” And again with “everything happens for a reason” or “look for the silver lining” talk and I’m just so sick of it. Is any of this meant to help me feel relief? Because all I want to do when people tell me this is punch them in the face. Oh and the next person to compare my loss to them losing their dog I’ll probably go ape on them. I don’t need any “bumper sticker” feel good quotes. I just want someone to say, “I’m so sorry that sucks” and leave it at that. I don’t need people looking for a solution to help me feel better because it doesn’t exist. I just have to live my life, I have no other choice, time goes on and I’m just here for the ride.
I thought I had experienced “trial of faith“ before but it wasn’t until now that I truly understood that it’s not a test of faith but a trial that requires faith. Unfortunately, I’ve learned that I truly struggle with this. I don’t know what is really true and at times I find myself completely frustrated that this is the experience I get to have. I have experienced the “bitter” before in other ways but this is not bitter, it’s completely vile.
I often wonder why I didn’t get the miracle I asked for when there are others that seem to get their prayer immediately answered. I also wonder why Stetson got such a short earthly experience and what it was all for. It’s easy when you're not going through difficult times to think about all the promises that the gospel has to offer and you believe them. I can honestly say that it wasn’t until this experience that I have truly questioned if what I have believed so full heartedly is real. I so desperately hope it is. When people talk of the miracles they received I feel forgotten. I wish so badly that Stetson could have been mine. Of course there were little miracles along the way, him crying at birth, Levi’s work being flexible, our insurance covering so much of the expenses, having the ability to be close to Primary Children's Hospital, I am aware that these were all miracles but I wish I didn’t have to recognize these miracles and I could just praise God for healing Stetson completely instead.
This experience has sucked and I feel so broken. I’m really good at putting on a face and there are times when I’m having a good day. I’m so glad I have Georgi because I just want to occupy my day with her and make sure she is getting the mom she deserves. I take her to the park, splash pad, and museums; I do her hair, paint her nails and play house with her. All the while I try not to think about the fact that there is no second carseat in the back seat. It's difficult but I know she deserves a happy mom. There are days that it isn’t easy but I know that I must go on for her and for Levi because there is no other option. I miss Stetson and I’m learning what it means to be a mom who lost a child and right now it's just hard and I hope that one day it will be better. One day I will see Stetson again and I’ll get to see that little baby boy grow up. All I can do now is hope.
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