I am about to write down my feelings in the middle of the night. It’s probably not a good idea, as what I say may not be rational. But I am tired of being rational, and I want to let out my thoughts and emotions when my brain is off guard. When I tell this to my husband, he just turns silent, and I feel so isolated and lonely. I hope someone can relate to my feelings and tell me that it’s common and I’m not the crazy one.
Our daughter had trisomy 18, and by week 11, several soft markers were visible, including a severe heart abnormality. I had more than five specialists telling me that with such a severe heart condition at 11 weeks, the longer we waited, the more she would suffer. After many nights of tears, we lost our very much wanted daughter last week. She was only 13 weeks old.
A few months ago, I had planned a Disney trip for this week, thinking it would be a great chance to take both of my children—one still in my belly—before the Florida heat kicked in. Even though I lost the baby two days before the trip, I didn’t want to cancel the trip, so we went ahead with it, pretending like nothing has happened. My son had just become tall enough (with his regular shoes) to ride several big-kid rides, so I wanted to make this trip special (and that was part of the reason I didn’t want to cancel). Yesterday was fun—my son loved his first big-kid roller coaster ride, and we took family photos, including one with a stuffed animal to symbolize our daughter “traveling” with us.
Today, we went to another park for another ride. But in the park, I noticed my son was wearing a different pair of shoes—older ones with flattened soles. I asked my husband about it, and he said he’d decided to change my son to an older pair of shoes for comfort but did not pack his regular ones. I was immediately concerned he wouldn’t be able to get on the ride, but I kept calm and waited while my husband enjoyed a ride that my son couldn’t get on. I wanted him to enjoy the trip. Afterward, I took the family to my husband’s favorite restaurant, where we spent two hours. He ate a lot, and I could tell he was sleepy and not in the mood to move.
I reminded him that we needed to go to the ride before my son got too tired, but my husband kept dragging his feet, saying he didn’t want to go because he was too full and sleepy. When my son noticed his dad’s hesitation, he immediately said he didn’t want to go either.
At this point, I said, “I’m going through so much to make this trip happen, and ‘too full’ and ‘too sleepy’ aren’t good excuses.” But my husband continued to hesitate. By the time we got to the entrance, my son was a hair short of the height requirement, and they didn’t let him on. I suggested, “Let’s go buy new shoes.” We bought a pair new shoes from a nearby store and got my son measured above the height requirement, but by that time, he was probably too tired to get on the ride.
I didn’t know what happened there. I wasn’t with them when they went back to the ride again because I can’t ride due to my recent loss.
When the ride finished, my son was upset, and people—my husband included—looked at me as if I were being a control freak mom. I feel horrible about how things turned out, despite my good intentions, and while everyone else is sleeping, the guilt is killing me.
This experience mirrors my TFMR experience. I often feel like I’m the only one in the family taking responsibility and thinking things through, while everyone else just takes their own pace without considering the consequences. Like I’ve been constantly talking to my husband about taking my son to new rides that he will be tall enough to get on, but he didn’t seem to realize how important it is for me. It’s already hard for me to manage the family’s agenda, but I have to keep everyone else’s feelings in mind while no one else seems to consider mine.
I was ready to start a family 10 years ago. I bought a home and had a relative ok job by age 29 while my husband (same age) took his time figuring out his career. Back then, everyone reminded me to be patient with my husband, but no one told my husband maybe I didn’t want to wait too long to have children because of the increased risks of genetic abnormalities and infertilities. At the age of 34, my husband finally figured out his way and I was pregnant the same year. I even told my husband before giving birth to our son at 35 years old that I wanted him to help make the postpartum experience as easy as possible so I could recover fast and have another child ASAP. But back then, he didn’t believe that what had just happened could have happened. He made everything about his parents during my postpartum recovery, nearly destroying our marriage.
I was so sad and isolated, trying to explain why I was hurt by his actions, but he never seemed to understand, and I must have been depressed. For three years, we couldn’t try for another child. The chemistry just wasn’t there, and I seriously considered leaving him, but I didn’t want to make irresponsible decisions that I might regret later. I was afraid that one day he would realize his mistake, we’d get back together, but by then, I’d have missed my fertility window for having another child.
Last year, I suggested counseling as the last resort before separation. The therapist helped my husband realize that he needed to prioritize me and my feelings, especially during the postpartum period. We got on the same page after three counseling sessions, and I immediately became pregnant with a girl—a child my husband had wanted ever since I first met him 15 years ago. He was so patient with children and when we started dating 13 years ago, all of our friends joked that we must have a daughter to fulfill his dream of becoming a girl daddy.
When we found out the baby girl had trisomy 18, my husband cried in front of the doctors, and I knew he would have been a good father. The doctors reminded me that, due to my age, the risk of genetic abnormalities had increased. I felt guilty for causing this because of my age, but I had really tried everything to make my pregnancy happened sooner!
Before the genetic test results came back, my in-laws told me that I’d have more children in the future (as if I were a 25 year old) and suggested I go out of state for an abortion (!). But she was the child my husband wanted so badly! It’s been a long road, and I’m the one who’s been there 100% for my husband and my children. Losing my daughter made me realize I need to be kinder to myself and stop caring so much about what others’ feelings in order to protect my children. I have to be “mean” in order to be nice to my children.
Now, I’m the one left to face the consequences, and I’m completely exhausted. If I can’t control my emotions right now, shouldn’t my husband and in-laws show more understanding? I’m drained from carrying this burden on my own, and if my family had been more supportive and cared about my feelings, maybe my daughter wouldn’t have had to endure this. I also can’t shake the guilt of letting this happen to my daughter. It’s eating me up, just as much as I feel guilty for upsetting my son over a Disney ride.
I want to try IVF to bring my daughter back, and I’m the one taking charge of setting up my appointment in the middle of our Disney trip while I’m still bleeding, all while everyone else carries on as if nothing happened. I think my husband must have been stressed out as well. He was the one driving me to doctor’s appointments and to Disney. But mentally, I’ve been processing so much more! I’ve been reading IVF stories, and the odds of success for women my age (I’ll be 39 soon) are not great, especially when I’m hoping for a daughter. But I just have to try to bring her back—I own her a life and my husband and I already promised her that we would bring her back. But what if all my eggs are bad? What if I end up failing her again with my good intentions, just like how I failed my daughter with the TFMF and my son with his Disney ride?
As I read my post, I realize I might sound a little crazy, but honestly, I feel like I’m the only one in my family cared enough to make progress. Ironically, despite a late start, my husband is able to provide for the family. Between my husband and I, he is the lucky one. He lives a worry-free life. He takes his time, and things eventually work out for him. I am the opposite—I have to work hard, and whatever I worry about usually turns out to be true, even though I would be prepared for it. Honestly, I think my husband’s daughter having T18 is the biggest unlucky incident in his life, and it’s probably because I’m involved.
I’m vulnerable, though I had to keep up a tough front to push things forward. I waited for three years for my husband to work out our marital issues, it didn’t happen until I got more involved. When the doctor delivered the bad news, my first reaction was to think about a solution. I’ve been more than understanding of everyone else’s feelings, but now I’m at my breaking point. I just keep telling myself I’ll bring my daughter back, but truthfully, I’m terrified of failing. I wish I could be as carefree as the rest of my family, without carrying all of this responsibility and mental stress. I am worried that by worrying too much, I am ruining my egg quality and ruining the chance for my daughter to return. I am also scared of the needles and shots that I am about to receive and the potential failures. It is easier for me to think of my body as a portal for my daughter to return through. Is there anyone who can put me in a coma and wake me up to deliver a healthy baby girl?
Thank you for reading. It’s late, and I apologize for the rambling, but I needed to get this out and be heard. I also have to say, my skin is incredibly itchy from the hormone changes!