A Surprise In The Journey
It’s been awhile since I have posted. I actually have been working on a post describing the last 6 months but became overwhelmed by the task of detailing every feeling and interaction that my life became acquainted with at that time. I decided it would be far better to give a brief synopsis of those six months and bring all readers up to speed with my current pregnancy, which has brought me into a tailspin of emotions and unknowns.
It was around late July early August that Levi and I were seriously contemplating our family planning. The more we dug into the process of IVF the more overwhelming and frustrated I became. The expense coupled with the low success rate was eating at me. Along with the possibility of having embryos that weren’t healthy but discarding them seemed like a “gross” thing to do. I deeply struggled with the thought of IVF and its process and felt like I was getting no clear answer as to what was right. At times I’d even prayed that we would magically become pregnant and then the decision would be made for me. However, I also struggled thinking that would be irresponsible knowing that our imperfect bodies pass on a deadly disease. But when Levi and I looked at the numbers and planned our family based on the success of the IVF compared to the success of a healthy baby on our own, our chances were better going the natural route. IVF has a success rate of approximately 50-63% (leaving aside genetic factors) while we have a 75% chance of a healthy baby all on our own. If I left out all the emotion of having a baby then of course the natural route has the best success and is most cost effective. But as it turns out having children is a deeply emotional decision and the natural route if it went wrong has the biggest emotional expense that I just could not endure again.
I found myself in a battle of what is best family planning for us and I wanted a cut and dry answer. All around me everyone seemed to have the ability just to have a family and not worry about the things I have to worry about and I’m deeply jealous of it.
I don’t think there is any way to adequately describe how it feels to be a mother and how it feels when you can’t be one or in my case shouldn’t conceive. It’s a strange place to be. I grew up thinking that having my own children would at the very least be difficult if not impossible. I came to terms with adoption, if that is how God wanted me to build my family then that is what I was going to do. Then finally, the impossible happened and surprisingly with only a year of “soft” intervention we were pregnant. We were over the moon when it happened for us and not once but twice. Now it gets ripped away from us. The clear prospect of conceiving naturally has died and along with it one of our children.
How could it be this way! I understand the joy of having my own children, but I also understand the pain of losing one of my children. If I conceive naturally again I could lose a child, put that baby through the pain and suffering that Stetson went through. To some this may seem juvenile to complain about the gift of having my own biological children, especially when we were unsure it was a possibility. I understand, it may be improper to say and had I not been on both sides of the coin, I’d agree with you. From my experiences not being able to conceive was easier to endure than feeling like if I did it would be irresponsible, the possibility of having children feels stolen from me.
A spirit of gratitude doesn’t not mean you are absent of pain, Can I not be both grateful for Georgi and angry over Stetson? Of course I’m not the only one haunted by the death of Stetson. Although Georgi is young she is not unscathed from the loss of her sibling. She may not have the words to describe it but I can tell you that her new developed clinginess towards her doll and towards me has been due to the fact that she comes home a lonely child. She is aware that her cousins have siblings and she is also aware that her cousin who is the only child will soon not be because “mommy has a baby in her tummy.” Come early next year Georgi will be the only cousin without a sibling to play with.
(Photo Credit: Whitneyreaphoto.com)
With time passing I became more tormented by the unknowns and I just wanted answers. I wanted “this is what needs to be done”! But of course I wasn’t getting it. I also struggle going to God with my concerns, I felt hopeless and almost like God didn’t or doesn’t care. After all he caused my pain, no one else did but him.
Over the summer I spoke with the missionaries, my bishop, and Stake president, I went to church (though grudgingly) and occasionally I’d have a heated one-sided prayer. I just felt angry and I was honest in my feelings and my interactions with people. Some interactions weren’t what I was looking for while some were very helpful and perhaps softened my heart a bit.
Meeting with the Stake presidents was a good experience. He didn't give me a silver lining, none of the “all things happen for a reason”, or “you’re just special and blessed to be Stetson's mom.” Nothing like that and I appreciated it. He was honest and said he couldn’t give me an answer but encouraged me to go to the temple, to pray, to find a way to continue moving forward. He left giving Levi and I a blessing and encouraged us to get our temple recommends renewed promising us we would eventually have sacred interactions while at the temple.
(Photo Credit: L Veit)
We ended up missing our scheduled session but decided to do sealings instead. While there I tried to focus on the beauty of loved ones embracing each other as they became sealed as a family unit. Unfortunately my focus failed and I ended up missing my little boy who I don’t get to have with me. I felt anger as I sat in the celestial room. I just cried missing him. After we left the temple I was angry it wasn’t the experience I wanted. I had fasted and prayed that my experience would be good and that it would give me a clear answer on how to grow my family, unfortunately I left the temple feeling disappointed and upset and just missed my baby.
Levi and I had extensive talks on our family planning and ultimately decided we would not actively try but wouldn’t protect. We felt like this was a fairly safe state of limbo since I had to use fertility to get pregnant and did not have a cycle to track any sort of ovulation.
Although we found a state of limbo I found myself questioning if we were making the right decision. I was constantly thinking about whether God allowed Stetson to have this disease or did he just not intervene and our bodies decided that fate for him? If it was the first then would God choose me to be a mother of more than one terminal baby or would he protect my other children from that same fate? Or if it were the latter then why would God intervene if it happened again if he chose not to do that for Stetson? I don’t think I’ll ever know the answer and I’m not certain any answer would somehow bring me closer.
Levi once mentioned to me “God knew Stetson’s spirit was going to the body he was given.” I know this to be the case but what is stopping God from protecting my other children from having galactosialidosis? Am I just meant to be a mother who loses more than one of her children? Or do I live in the time period I do with all the modern technology so I can ensure none of my other children suffer the way Stetson suffered? Sometimes I feel like if I had more faith than everything would workout but truthfully I prayed and asked for help and that my faith (however weak it was) would save my baby but it didn’t. Asking me to just have faith sometimes doesn’t yield the result that is desired.
I can’t help but live in fear that God is determined to beat me down. If God is real how could I trust him? My son died because he allowed it to happen. I have no one else to blame! I know we all are born and eventually we all must die but I struggle with trial and suffering because of nature not due to the consequence of peoples’ agency.
After toying with this inner battle for several weeks I decided IVF was the proper way for us to do family planning. I told Levi I’ve decided that we are given the knowledge that we have to help us avoid having a sick baby. He agreed to this pursuit and I called my doctor's office and asked if they would write a letter to our insurance to petition for coverage of IVF. I was feeling confident that we finally made a decision towards our family planning. I was still scared and nervous and unsure about the timeline of things but felt like I finally took control and what was the right path.
At this point it had only been approximately 1 1/2 months since Levi and I were “not trying but not protecting” and I had taken about 8 pregnancy tests in that time frame just out of anxiety and worry. I was doubtful I was even pregnant because I had to use fertility in the past and had no cycle to track for approximately 3 months. However, two days after I called my doctor to put in my IVF request, I decided to take another test. I was feeling off (for the past several weeks) but was not having my typical early pregnancy symptoms but decided I should take a test. Once it was negative I would schedule an appointment with my family doctor to figure out what may be going on. I called and told Levi I was going to take another test just so I could honestly confirm with the doctor that my symptoms were not related to pregnancy.
I went to Wal-Mart, bought two $0.88 tests and then took Georgi to school. When I got home I decided not to wait until morning to take the test and went up stairs. Before the test was even completed processing two bright pink lines appeared. Immediately I thought, “you’ve got to be kidding me” and just felt a wave of mixed emotions. I was excited because it was the first time that we got pregnant without intervention. I was angry because I had finally felt like I made the decision to pursue IVF and now that was no longer a decision I could make. I suddenly felt guilty like I was betraying Stetson in some way. I felt worried because perhaps Levi and I’s previous decision was reckless and irresponsible and who knows what the fate of this baby would be. All these emotions smacked me in the face and I didn’t know whether to laugh or cry or do both. I decided to take the second test just to be sure and of course it was positive as well.
Rather than wait to tell Levi until after he was home from work I drove to his construction site with my positive test in hand. I handed it to him and he looked shocked and laughed with a bit of uncertainty and said “well alright”.
I later called my doctor's office and they thought I was calling to check the status of my letter request. The nurse said “Dr P. is working on it and will send it off just as soon as it's done.” I responded “Well there is no need because it turns out I’m pregnant.”
Throughout my early pregnancy I struggled with so many different emotions. But mostly I was struggling to stay positive. I already felt like I had to plan a funeral and prepare for the worse. I didn’t want to plan for a happy ending because I didn’t want to get my hopes up. I also found myself unbelievably miserable with sickness. I haven’t officially been diagnosed with Hyperemesis Gravidarum because I was able to avoid the hospital but my symptoms of early pregnancy are definitely within that spectrum of severity. I struggled to hold down much and I’m very medication dependent. I lost approximately 10 pounds and threw up a minimum of 5 times a day (with medication). However if I missed my medication I threw up approximately 15-20 times a day regardless of anything being in my stomach. It didn’t matter how much vitamin B12, ginger, crackers, Unisom, etc. nothing worked and this is just the story with all my pregnancies. Thankfully, I was able to avoid IVs this time around but knowing I would not greatly improve until approximately 17wks was discouraging.
I felt like a failure to Georgi I couldn’t cook, I couldn’t clean, I couldn’t drive, and the debilitating nausea interfered with the daily function of my life. I felt like I could barely get out of bed and take care of myself and the mental toll caused me to feel like I was drowning.
Feeling like I was chronically ill and it all could be for a terminally sick baby was heart wrenching. I didn’t want to suffer for a baby that I would have to bury. I wish I could say that throughout the day I felt relief at some point but in all honesty I felt like I had the stomach flu and I had to rely on many people (some of which felt like strangers to me) for help because I couldn’t take care of Georgi the way I wanted to and the way she deserved.
I frequently broke down crying because I wanted relief and because I just no longer wanted to be pregnant especially if it meant I would have to go through the heartache I had with Stetson all over again. I was angry at my decision to not protect and knew this was a consequence of that choice. I had no one to blame but myself and I felt guilty. I begged Heavenly Father that the baby would be healthy and if it wasn’t that I could miscarry. Please don’t make me suffer just to bury another one of my children again. I couldn’t take it! Mentally I was falling apart. I wanted it to be over the pregnancy, the nausea, the throwing up, my inability to function, I wanted to be done with it.
Being so incredibly sick while pregnant makes keeping pregnancy a secret impossible. When Levi and I found out I was pregnant I was only approximately 3-4wks along but I was so sick within days of finding out that already my ability to go about my daily duties went out the window. For this reason we told our families early on. Majority of people expressed their joy and excitement while also giving their personal testimony “that everything is going to be perfect”. People would say “oh well prayer is a powerful thing, we’ll pray”, “I just know it will be fine”, “This is a miracle baby”, “the odds are in your favor”, “it's not going to happen again, I just know it”. Many of the people who shared similar comments of hopefulness forget that they did the exact same thing the first time we discovered Stetson was unhealthy.
While we hope for the best, the truth is God’s will is His. No amount of praying and fasting changed anything for Stetson so who’s to say it would help this baby. Just because this baby was my first baby without fertility and could be deemed a “conceived miracle” does not make them protected or immune to disease or any other ailment that could go wrong. People who have “miracle children '' can still have a stillborn, still get sick, and still succumb to tragedy. A miracle of conception is not a superpower. People also told me with complete confidence that Stetson would be fine, that he would get better, that there was no way I was going to bury my child. Well they were wrong, their confidence meant nothing and it changed nothing for Stetson. So no matter how well intentioned people's confidence and faith are in the health of this baby it meant little to me.
Levi would often become frustrated with me for not being more positive or hopeful. In my defense I would rather not give myself hope for something that may not be a reality. I don’t operate on the dream or wish for things, it's fantastic that Levi does and he can be positive but I prefer to look at what is in front of me and that is I know nothing regarding the health of this baby but, I do know death is a possible result so I prefer to face that fact than try to hide from it.
It may sound morbid and unwise. After all, statistically the odds are in our favor. But Stetson had those very same odds. No one wants to believe the worst can happen to them and when it does it’s hard to see past it. Before Levi and I knew we carried the gene for Galactosialidosis we had a higher likelihood of being struck by lighting. In all honesty I felt deep down this baby was “okay” but I also didn’t want to cling to that feeling because feelings rarely interfere with fact. I just didn’t want to give myself false hope and just wanted to stay neutral.
As my pregnancy moved along I tried my best just to survive. I was juggling feelings of frustration, worry, guilt, etc. I even thought, “How can I bond with this baby? '' feeling guilty for not bonding and feeling guilty if I do. It's hard thinking that Stetson wouldn’t be the last baby I cared for. The last baby to lie in the crib I have stored away. Stetson wouldn’t be my last baby anymore and I worry that my memories of him will become even more clouded as I care for another.
Levi and I had a scheduled ultrasound at 15wks. Our doctor does an ultrasound at every visit because of our history with Stetson. It wasn’t until that ultrasound that I felt uneasy about the health of this baby. When my doctor first put the transducer on my abdomen all I could see were two full ovals on the screen, immediately I thought “oh my gosh! Baby’s swollen.” After a second or two the image became more clear and I knew I was looking at the back of the baby's head and back, we could now see a more detailed picture of a baby. Doctor said everything looked good so far. I didn’t ask any question nor did I voice the concern I had other than a comment of “oh baby looks chubby”. I know at this stage it’s difficult to see anything so I would have to wait for any more information. However, when we left I felt uneasy but knew there is nothing that could be done, especially at this stage.
Levi and I decided that we would do non-invasive prenatal testing. This is the same blood test we did for Stetson to rule out Trisomy 13, 18, & 21 as well as reveal the baby’s gender. The doctor wanted to ensure that if something abnormal showed on an ultrasound we could rule out at least some chromosomal abnormalities. When we received the results everything came back as normal and we are having another boy. Although, I already knew it was a boy, so that wasn’t a surprise. Levi took the test as a win that perhaps it would decrease our chances of other chromosomal abnormalities. In theory I would say that’s probably true for most families, however, Stetson’s test came back normal as well so I didn’t have the confidence that Levi had.
Waiting until the anatomy scan at 20wks was very difficult. The holidays were a good distraction though difficult at the same time. It was exciting to see Georgi wanting to put out cookies for Santa and talk about Rudolph and the spirit of Christmas. We got to decorate cookies and she helped participate in gift-wrapping and us dropping off bread loaves to friends. On Christmas Eve Levi and I accidently woke Georgi up when we were getting to bed (At grandparents house). She sat up in bed and moved her hair out of her face, then her eyes got real big and she clasped hands together and asked excitedly “did he come?” I told her Santa had just left and as soon as the sun came up we could open presents together. She was so excited that Levi walked up stairs with her to let her have a sneak peak.
The holiday’s been a good distraction but certainly were not free of heart ache. I was so sick through Thanksgiving I honestly wanted to sleep it away. But Georgi got to spend time with cousins and play which she had been severely lacking. Christmas was a great improvement in my physical function but I was too sick to make the drive down to Logan to decorate Stetson’s plot. Georgina and I dressed Stetson’s little tree to be set up at his plot, even though I couldn’t go and Levi and Georgi made a day of it. Georgi even said, “This is the best day ever” multiple times. The snow was too deep to put up his tree but Georgi helped Levi clear as much of the snow as they could to put some of his other decorations up.
It’s an exhausting dance trying to be focused on the moment and happy and excited for Georgi and all the wonderful things she gets to do, but missing Stetson all at the same time. I desperately want Georgi to have the joy of siblings but after losing Stetson it's scary to think that maybe she could lose another sibling. Georgi has been through a traumatic experience, when her aunt had a baby one of the first things she asked was, “Mommy is Lexi’s baby going to die?” “ Is her baby sick? Does she have to leave him at the doctors.” I did my best to reassure her though she frequently would ask similar questions and similar questions regarding my pregnancy. She has been voicing her fears about death, fear of her dying and fear of me dying she says, “If you die I’ll be all alone.” These are not fears a 4 year old should have. I can’t just brush them aside either, they’re real fears and things I have no control over. I just tell her “I don’t think those are things we need to worry about right now.”
She was so excited when we told her that we were going to have a baby. We were on a family walk and Levi said “Georgi do you want another brother or sister.” She responded “yup” not realizing what we were getting at. Levi said, “ Well mommy has a baby in her tummy.” She kept walking for a minute and then she turned and asked “mommy you have a baby in your tummy?” I replied “yes”. Her face lit up and she raised her hands to her face clenching her fist and shaking them with excitement letting out a little squeal as she ran to Levi and I. I’m upset I didn’t get it on camera it was so cute.
Every time Georgi asks about the baby’s health Levi and I agree just to tell her what we know. For the time it was “as far as we know baby brother is healthy and we will let you know if that changes.”
Finally our 20-week scan came. I was so nervous because I couldn’t shake the feeling that I wasn’t going to get the news I wanted. Right when I walked in the room I felt like I wanted to cry. I honestly didn’t even want to be there but how else would I learn anything. I lay down on the table and the sonographer started the scan. She first found the profile and as soon as I saw it, I felt worried and said, “his nose looks really tiny.” I know that the presence of a small or lack of nasal bone is a pretty significant sign to Down syndrome but our blood work came back normal, was it wrong? Or what else could it mean. I was pretty distracted the rest of the scan. We did mention our experience with our last pregnancy to the sonographer and she kept reassuring me that his heart looked good, his legs looked good, and that he looked “pretty good”. At the end she asked if we had questions. Although I wasn’t sure how I felt about the baby's face, I knew she really couldn’t answer much so I kept quiet.
Right after the ultrasound we had an appointment with our provider. While in the waiting room I told Levi that I’m extremely worried about the baby's minimal appearance of a nose. Levi pressed me on why I didn’t bring it up during the ultrasound and was visibly irritated. I told him that the sonographer really couldn’t give any indication on the baby’s health and all my real concerns would have to be answered by our doctor anyway. I reassured Levi that I would bring it up with the doctor.
As Levi was walking me to my car (we drove separately so he could go back to work), I stopped and broke down crying. Levi asked, “Why are you crying? The majority of the news was good”. I responded, “Because we didn’t get a full bill of health, we are leaving with unknowns.” Levi hugged me and tried his best to reassure me and to stay positive and pray. I was angry and fumed saying things like “It doesn’t matter how positive I am. All the positive thinking in the world wouldn’t have changed anything for Stetson, so why would it change anything for this baby?” It’s like the weather; no matter how I wish, hope, and even pray for sun, it will still be raining. I’m so mad that I just couldn’t get a full bill of health and instead I’m leaving another appointment with unknowns. Even though all of the baby's vital organs appear to be healthy he could still have a chromosomal issue and that could have a million different outcomes for him and our family.
When I got home my family was eager to hear the news. I told them that most of everything looked healthy for baby but he had an abnormally small nasal bone and thickening of the neck, which are “soft” indicators of possible chromosomal abnormalities and that they wouldn’t be as big of a concern if it weren’t for our history with Stetson.
Majority of the family just listened but some family members gave their reassurance of “oh I had similar indicators with one of my kids ultrasounds”. Although their intentions were good, their way of trying to give me optimism just caused me to be upset. None of these people have a history of having a baby with a rare genetic disease nor can an ultrasound from 20-30 years ago be a decent comparison to one now. I just can’t believe that after all we went through with Stetson I find myself in a different but similar place of something that doesn't look quite right but we have no idea what it is.
I have found myself going down the internet rabbit hole of what these “soft” indicators mean. I will admit that the internet is a horribly bad place to seek accurate information, Dr. Google at times could be an unreliable source and oftentimes gives you the worst case scenario. However, there is good information as well and although it may be difficult to sift through accurate and false information, I couldn’t just sit and “think positive” until my next ultrasound.
My biggest question was “if there is a chance that the baby was fine, what was the percentage of babies with “soft” indicators that had no chromosomal issues?” Also if Down syndrome was not the chromosomal abnormality we were looking at then what were the possibilities? It's no surprise the internet turned up disappointing news and nothing reassuring. What I discovered was that the chances of a baby with “soft” indicators having no chromosomal issues is .5-3% chance and if Down syndrome is ruled out its likely micro deletion of chromosomes is a possibility. Of course these are concerns I’ll bring up at our next appointment.
I know people want me to be positive and to pray that things will work out. To be honest I don’t believe they will and I don’t think it's helpful to pretend or convince myself that disappointing things won't happen. I could tell that anytime Stetson seemed to get a little improved some friends or family members would take that improvement as him getting better and the possibility that doctors were wrong about him all along. I couldn’t join them in that hope or even delusion. It’s not helpful to me to convince myself of things that simply weren’t true. Stetson wasn’t getting better and he didn’t get better. It was life shattering and I’m angry and feel pretty defeated, even now. Pretending that is all going to get better wouldn’t have changed that. I won't fall for that delusion with this baby either. God's will is His; it doesn’t really matter what I ask for. Ultimately this baby's destiny will be what God’s will wants it to be.
Do I believe that our actions have consequences and can shape our lives? Of course I do but I also believe there are things we don’t get to choose such as our ethnicity, eye color, skin color, genetic disease, chromosomal issues, etc. Things that are considered shaped by nature not by consequences of choice. When people make the statement “everything happens for a reason” it's not helpful because sometimes that reason is God either didn’t want to intervene or he wanted it that way. Both could be true for Stetson, his body fell to imperfections of immortality and God didn’t want to intervene or he chose Stetson to die at the time He did. One was just how dominos fell or the other was a conscious choice. Neither reason seems good enough to me and these are possibilities for this baby as well. I could just be this walking anomaly that wins the worst lotteries to ever be played or God is consciously causing my children to be sick. Both are terribly sucky situations. I don’t care what the reasons are, none of them are good enough answers.
Since Stetson’s death I have been bombarded with cheesy, corny, statements like “everything happens for a reason”, “you and Levi are just so special”, “God doesn’t give you more than you can handle”, “Stetson was so perfect that 5 weeks was all the time he needed on this earth”, “God needed another angel” blah blah blah. It doesn’t matter how true or untrue these statements are, I'm not all of a sudden whisked away in gratitude and happiness because “God needed another angel” or it turns out Levi and I are so special God killed our baby. What terrible statements these are if you truly think about what they mean for us. Now these same statements will once again be spewed for this baby.
I don’t trust that everything is going to turn out “fine” and I have told Levi before that I feel like God intends to take all my children from me. How am I supposed to trust in Him when I just feel like I’m waiting for more hurricanes to come my way? Wouldn’t it be great if every time someone endured a difficult thing they rose from the ashes like a majestic phoenix? Wouldn’t that just be peachy? I despise the idea that somehow my grief would be a catalyst to something “amazing” or “great”. I’m not some new and improved person because my son died nor will I be if this baby is medically/developmentally complex.
I take hope in the fact that this baby has “healthy” looking vital organs but find it difficult knowing that chromosomal abnormalities mean a million different outcomes and challenges. Not to mention that there is a slim possibility that galactosialidosis can make an appearance a month after birth (however I don’t think this is the case). I genuinely thought before my 15 week scan that everything was going to be fine but also know that people are surprised by unexpected news all the time.
It's astonishing to me to think about the likelihood of 1) having a child with an outrageously rare disease and 2) becoming pregnant with a baby who has a possible chromosome issue. The likelihood of either scenario is rare and to encounter both is like discovering a valley of unicorns.
I understand that there are people who have far greater challenges than I do. I also recognize that I have many blessings that others long for and that I truly feel grateful for. However, I find myself constantly feeling like I have to prepare for the worst. My guard can never come down because another storm is brewing and I just don’t know what it is. I have just become frustrated with the idea that with this pregnancy I had a higher likelihood (25% chance) of having another baby like Stetson than having a baby with some other unrelated chromosomal issue (3-5% chance). I hate that again I’m lost in darkness waiting to have some light shed on my situation but fear no clarity will come until the baby is born. What could be waiting for me at the end of the pregnancy road and what it could mean for my family?
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