No 1st Birthday

(Photo Credit: Amber Rust @ www. twocolorphotography.smugmug.com)

It’s been nearly a year since Stetson passed. It feels long ago and recent all at once. I often feel like time is fleeting yet I haven’t moved. I find myself moving with the day but not moving forward. I hate the Statement “move on ''. “move on”? How do you move on from your children? You don’t! no amount of time somehow creates the ability for me to grow away from the experience of Stetson dying. Grief isn’t something that is checked off a to do list. It isn’t something that is conquered, instead it's something that becomes part of you and hopefully one day I may grow used to it.

It’s like if someone lost their arm in a car accident, No one tells them “I’m sorry you lost your arm, but you need to move on.” This statement seems ridiculous to even mention. However, this same statement is used towards me. I’d gladly would've given up my arm for Stetson. I can’t move on, I suppose I need to adapt. I may not have physically lost a limb but, I certainly lost a part of me if not nearly all of me.

 

When I look in the mirror I hardly recognize myself and the parts that seem familiar I’ve started to loath. I’m trying to adapt,  which currently feels like putting on a faux happy face and filling my day with as much distraction as possible.

 

Of course I have moments that are happy and enjoyable. I love taking Georgi to the aquarium, library, park, to see cousins etc. I try to fill the space of the day focused on her. However, by the end of it I feel physically drained and full of heartache as I think about the memories that I’ll never be able to make with Stetson. I feel like a colander. I’m trying to continually dump more water into it before it all drains out and I'm empty.  

 

As I go through life I’m in this constant state of hyperactivity but I’m unable to make any kind of decision when it comes to our family and my faith. I feel a sense of urgency due to many factors such as my age, Georgi’s age, and the want of having a baby with us. I want to grow our family but every time I try to make a decision I feel burdened by grief and I want to have Stetson with me. Then I grow angry, angry at the world at God for taking my baby from me. I lack understanding and with that my faith in God boiled into a point of evaporation.

 

I lost Stetson, I lost my vision of our future family,  and I lost my faith and now  I feel like a hopeless lump of a person. My baby boy is gone and so is any image I had of  our family. Before Georgi was born I came to terms that I likely couldn’t have my own children. My fertility has been questionable long before Levi and I met. We discussed the possibility that our family could only grow through adoption and we both made peace with that. However, we still tried and after a year of fertility drugs we had Georgi. The joy she brought is beyond comprehension. After that we had hope that we could grow our family. Again we did another round of fertility drugs and Stetson came into the picture. I feel immensely blessed that I was able to get pregnant when it seemed that wouldn’t be an option for us. But, now I feel like that blessing has been ripped from me. I am no stranger to the heartache and burning desire to become pregnant and waiting, hoping, praying that it would happen. Now I’m burdened with the desire to grow my family knowing that 25% of my children will die in the end. The options I have set before me are far from ideal.

(Photo Credit: Jostlyn Stilson @https://www.jostlyn.com/) 

I desperately want Georgi to have a sibling but the more I think about the possibility of having another child the angrier I become, I just want Stetson back. I just wish he was here with me and I wish I could raise him. At his funeral I was on a spiritual high and since then I have just become angry with God. I feel my faith wearing thin and I feel like a big part of my purpose in this life has left me. Jesus came to this earth and he healed the deaf, blind, lame, leopard, and all manner of ailments but he wouldn’t heal my baby. Perhaps my faith wasn’t strong enough, maybe I’m not righteous enough, or maybe God just didn’t want to allow Stetson to Stay with me. Sometimes I feel like I just wasn’t a good enough Mother for him and God decided that I wasn’t ready to raise him. I just don’t understand why Stetson had to leave this earth the way he did. Why this way? This genetic disease? Was it not enough that my son died but now I run the risk of causing the same fate to my other children. If God couldn’t or wouldn’t fix Stetson could he at least fix Levi and I, so our other children wouldn’t have Galactosialidosis. The saying “life is not fair” has never been so true. The options I have set before me are 1) getting pregnant and hoping for the best, 2) adoption by private party, foster care, or embryo, 3) IVF, 4) sperm donor, 5) tying my tubes to avoid any possibility of a pregnancy and saying my family is complete. Every single option has some burden or difficulty and potential heartache, not only for Levi and I but for Georgi as well. And not a single option is as simple as try again. I feel no guidance and no spiritual pull towards any direction that would allow me to grow my family. I just wish I had a simple solution and my concerns were elevated. Someone else in my situation may have more clarity on what they would do and there have been a great many people who have said “oh just do X,Y,or Z '' as if this decision was as easy as deciding what socks to put on in the morning. I know that these people are genuinely sharing what they feel is good advice but it is in fact one of the greatest insults and jabs to my trials. I’d just wish that I could be as confident in a solution for myself as onlookers are. At times Levi and I thought perhaps we will just be faithful and try and pray that our 75% of a healthy baby will be in our favor. Unfortunately, those odds are too high for me to want to gamble, and it’s a gamble that if it doesn’t go right a baby dies. There is such a weight on me as I move through this life. I don’t want life to move on but, unfortunately I have no control over the rise of the sun. No matter how much I wish time would stop I close my eyes and the earth has spun around again teetering between the present and the near future. I sometimes think that I’ll never be able to move forward, I’ll just be frozen, unable to make a decision about how or when to grow our family. Feeling disappointed and missing Stetson never coming to accept that this is my new normal. Levi made us an appointment to see an IVF doctor in September. I was grateful he took the annotative because I’m still not sure when or if I’ll be ready. The appointment was merely to see if this is the route we want to take. I wish the appointment went better than it had gone. I wasn’t super impressed with the doctor. He was quick to dismiss my personal hang-ups with IVF and none of his answers seem satisfactory. I asked him about what to do with embryos that aren’t used. His response is “you’ll use them all because you may have only one to two embryos that are worth implanting.” He further explained that a “large percentage of embryos would die /stop developing even before genetic testing could be done. Out of the embryos that continue to develop 25% of them will have galactosialidosis like Stetson so we wouldn’t use them. Other embryos would have genetic problems so they wouldn’t be implanted.” By the end of the process I’d be left with one, possibly two healthy embryos. I knew the doctor was a member of the Church of Jesus Christ of Latter Day Saints and so I explained that I worry about the moral aspect of having embryos and discarding them. I can honestly say I’m not certain when the spirit enters the body and I know there isn’t any revelation given to this subject (at least to my knowledge) but I also disagree with abortion because the makings of a person is present right away. The minute an embryo is formed, new human DNA is formed, it's no longer the mom and the Dad but a complete blueprint of a new life. Whether the spirit enters that tabernacle right away or not I have no idea but a unique and beautiful human life is formed. I voiced this to the doctor to which he responded without hesitation “The spirit doesn’t enter the body until plantation. Catholics believe that the spirit enters at conception, we believe its plantation because unless implanted an embryo never develops beyond that stage.” I personally never heard this from the Church before and was taken aback by his blunt statement. In my own research I haven’t read any kind of official view or even statement made by church leaders regarding this topic. I of course have sought for this answer upon learning about Stetson and the disease we pass to our children and have never heard of such a statement made, in fact there is little to even offer on the subject. Perhaps if he had an official copy of the statement made by the church I would have felt more comfortable with the response. He is entitled to his own opinion, and perhaps he is correct but I felt like he was sharing an opinion and not an official church view. (If any one can find an official statement I’m willing to listen.) It’s important to note that even church leaders are entitled to opinions and we don’t know all things and that’s why the spirit is what you must rely on. Unfortunately, I’m lacking all confidence in that right now. I’m afraid my faith has been crushed beyond repair. However, despite the moral or ethical viewpoint I have about IVF I’m not sure I’m ready to put myself in that financial position. IVF needs to be paid upfront in full. Requiring us to take on a personal loan. There may be potential for us to get insurance to cover it by enticing them to avoid the potential of another baby like Stetson that would cost 3x as IFV, but there is no guarantee. Despite the doctors personal beliefs I still feel concern having embryos that aren’t healthy and have the same genetic disease as Stetson, I’m selecting that they either become stored in a freezer, donated to research, or we implant them during a time their likely to not take and I essentially miscarry, to put it in the doctors words “natures way of taking care of them.” It feels odd to think that I’m hand selecting my embryos. It feels wrong in a way. If I were to become pregnant on my own and have another sick baby like Stetson I wouldn’t do anything different. I’d carry them as long as I could and I would try to spend as much time with them before they left this earth. I would choose the same path that we did for Stetson. However, I’m not sure I’m willing to do it all again now that I know it’s a possibility for my other children. If the situation happened by accident it would be an easy choice. But I don’t know if I can intentionally make the choice to get pregnant on my own, taking on the responsibility of potentially another sick, dying baby and all that heartache all over again. After the appointment with the IVF doctor the more I realized that by all standards of statistics/data I should have miscarried with Stetson. I suppose that’s why genetic disease is incredibly rare. Most genetically compromised embryos rarely survive long enough to be held in the arms of their parents. Which causes me to wonder even more why Stetson made it through? Truly what was his purpose in life? I absolutely love him and miss him terribly but, I still don’t know what his life accomplished. Every memory I have of him is just sad. He lived in pain, unable to even hear my voice. He rarely ever got to even see me or his dad and sister. Even while pregnant with him I worried that something was terribly wrong. Every moment of his life was spent in the hospital or at home on hospice. Though he was surrounded by loved ones his experience was painful. I wish I could say that even as he neared death he was peaceful. Not many people get to witness a loved one die, it’s a painful thing to witness. It looks like its painful and I wish some of the things I saw I didn’t see. The last few hours Stetson was more at ease and became peaceful and I imagine as he drew his last breath he was unaware of what was happening that he was comfortable. This experience has caused me to fear so much about what is awaiting us after this life. I wish I was confident in my faith but the more I think about it the less confident I become. I truly worry that this is it, our life on this earth is all we have. That God is simply a made up idea to help us feel better. The thought that my baby just slipped away into oblivion is frightening and horrific. I find myself constantly fearing death and worried that I will one day lose Levi or Georgi. If God is real then I think of why this would possibly be something necessary to go through. I’m further from God than I ever have been. I wasn’t living an unrighteous life, Stetson’s death wasn’t the cause of someone’s poor actions like a drunk driver or a plane crash. He just had bad genetics which Levi and I had no idea about until he came along. We are told God loves us more than we can ever imagine. Well I love Georgi immensely and I can’t think of any good reason for Georgi to go through what Levi and I are going through. What lesson do I need to learn that I couldn’t possibly learn any other way? I feel like I’m in an abusive relationship. People tell me “endure, stay strong, there are blessings in the end”. Honestly it just feels like someone is telling me to take the abuse, take the torment, and the pain because at the end of it you’ll get a baguette of flowers. It seems completely ridiculous. I know there are people out there who are suffering far greater than I and again I come back to what lesson are they learning that couldn’t be learned in a less horrific way? Do we really need all the awful diseases? The crazy genetic disorders that cause people physical pain, and eventually death. Do we really need millions of ways that cause pain and suffering to draw closer to God? I can’t fathom a good answer, at least someone has yet to give me a satisfactory one. I honestly wish I was less angry and I felt guidance but I feel lost and I have limited strength to go on. I still try to go to church and we still pray and still do family scriptures but I’m just doing it for Georgi. I don’t want her to feel as I do. I want her to believe there are good things to come after this life, even if I don’t believe that right now. Hopefully one day I will because right now I’m tormented by this lack of faith. It just makes for a sad existence. What I thought I knew and how I feel are causing a war within myself and I can’t seem to move in any direction. It’s like I’m crushed under a boulder and I can’t do anything about it but hope I become numb enough I hardly recognize the boulder anymore or it will magically be lifted. I was doing some spiritual research and I came across a video of a father that lost his daughter to cancer watch it here. He had this to say about that experience.

"I remember feeling the last beat [heart] and getting up and looking down and    knowing that her body was all that was there and that her spirit wasn’t there. And that experience was pain and grief, that was the worst feeling I ever had in my life. I felt hopeless. I felt angry towards God. A part of me was ripped out and  gone. – The experience of seeing somebody first breathe and last breath gives me so much hope in a plan that there is so much more than first breath and last breath. So many times we get caught up in that, that it’s just we’re born and then we die. But when I held her the first time and saw that first breath I knew that she had come from somewhere else. I knew that this was not where this had started. That her life existed before this and when I experienced her last breath I knew that this wasn’t the end. I have hope that she is part of my life and that her spirit is still connected to my spirit. The peace that you feel it ebbs and flows sometimes it’s there sometimes it's not. But it’s always able to get back. Every time I feel angry or upset at God or feel like I’m done with this, in that moment it feels like there is no hope. But all it takes is turning back to him and that hope can come right back."

I wish I had his hope. Seeing Stetson pass makes me scared. To watch him die makes me feel like there is a dark oblivion. I want the hope that Heavenly Father has a plan, that this isn’t the end. I desire to have this faith. I desire to have the hope that there is life after death that this isn’t the end. 

I wish I knew what I don’t know. I wish faith wasn’t just a belief. I wish I no longer had to rely on faith but to rely on knowledge. Faith is fragile and it takes work to keep it going to keep it strong. However, I can’t imagine giving up the faith is easier. Having nothing to hope for is devastating and it belittles the life and the hardships we endure. The thought that oblivion is all that is waiting for us in the end is horrifying. 

Sometimes I have no hope and other times I have maybe a spec of it. But I know I want to have this faith and hope for something beautiful at the end of this life. I want to teach that to Georgi I want her to have this joy that she will see her brother again. Hopefully one day I’ll be able to say I actually believe it again. For now I’m just barely hanging on. 

Levi and I haven’t done anything further with IVF or anything with regards to growing our family. I know Levi is just waiting for me to be ready. I’m not sure I’ll ever get there. 

Christmas was difficult. I was excited for Georgi of course and her grandparents and other family members spoiled her immensely. But I often caught myself wondering if Stetson would have liked trains. How neat would it have been to see him open a Christmas present and be surrounded by his cousins. Instead I got to see my sisters with their beautiful babies do just that. Christmas for Stetson wasn’t about his mom and dad picking presents for him, instead it was us selecting a little tree to lay by his headstone and zip tying it to a post so the wind wouldn’t blow it away. 

Now his birthday is coming up and I have no idea what to do for it. It’s not a celebration of him turning one it’s just a reminder that he never made it to this milestone. I thought I would bake a cake for him but, it just seems odd to celebrate an event that actually isn’t happening. We of course will visit his plot and clean up his Christmas decorations and lay some new ones in place of them. But I suspect it will be very sad for our family. 

As time has gone on I find myself forgetting what he looked like. Of course I have pictures but the physical memory of seeing him is fading. Every night I think about him and I wonder how life would have been with him here. I’d like to say that I wouldn’t want for anything but of course I know this is a lie. We truly don’t know how great life is until it changes. I just wish I felt gratitude that my baby lived as opposed to anger that he’s gone. I truly recognize the little blessings that happened throughout our journey but I wish I could exchange all those blessings for the one I truly wanted. Instead I’m angry that I must feel gratitude for the blessings that came but that I’d rather not have. 

I have moments of joy and I try earnestly to feel at peace. If not for myself but for Georgi and Levi, but I’m struggling for my want of Stetson, for Georgi to have a sibling, for our family to be like I envisioned. Every time I reach out for help I find myself more afraid and I back out. I don’t want to feel like Stetson is just part of my past. He is already in the past for so many people. He is just part of a tragedy that happened to our family and everyone gets to move on and eventually forget about it. We live with his memory every day. Everyday that goes by is a reminder that he never lived past five weeks and I’m stuck with wondering how things would be different. 

I know grief isn’t something that is overcome. It will always be there. I just hope I can get use to it. But right now I’m just screaming that things couldn’t be different. People say I’m strong however, being strong isn’t a choice nor is it the truth. People assume because I’m showered and getting dressed and taking my daughter to play that it's strength. It's not strength, it's life moving on, time passing by and I can’t do anything to stop it. 

I hope one day Georgi doesn’t read this and think that I miss Stetson so much that I forgot about her. If she only knew how much she occupies my thoughts and how much I constantly worry about her. That’s also why growing our family is such a stress. We know she is in want of siblings and I know she is in need of them. But I don’t have a clear path. Right now staying busy is my only solution. Sometimes I feel the only way our family will grow is if someone comes and drops a baby off at my door and says “I have something of yours”. However, right now I’d just settle for some spiritual direction. 

My family is my life and my calling and it's difficult knowing that a portion of it is gone. I wonder if we will feel whole again but, I think we will just get accustomed to it.

(Photo Credit: Jostlyn Stilson @https://www.jostlyn.com/)