I have tried to write this letter a couple of times, not sure where to start since there is so much that goes along with your story prior to your birth and death. For the sake of time I have decided to focus on my life after you died and the very many emotions I have experienced over the last 2 years. I know there are typical stages of grief that I should take the time to educate myself on, but I haven’t been able to bring myself to do that yet. Here I go.
The first thing I can remember after you died is being in shock. I am not sure how we even functioned in the beginning. Your sister was in the NICU, which provided a good distraction for the first 19 days after you died. It never even occurred to me that something could happen to her as well considering the two of you were born at 32 weeks and 4 days. I just assumed she would be ok, I am glad I was afforded that innocence at the time, since adding the worry that she would die may have pushed me over the edge and landed me in a psych ward. Some days I wasn’t far from it. I remember an episode after your sister came home where I was screaming, crying, and begging your father to take me back to the hospital, drop me in the psych ward, and take Sam back to the NICU. They were conveniently located right next door to each other on the same floor at the hospital. He never did it, but I imagine he might have been close.
While Samantha was still in the NICU your dad and I would get up each morning, get ready and head to the NICU, spending endless hours there helping to take care of your sister and just watching her sleep. I hate to admit it but I didn’t feel the same connection I had with you with your sister. Maybe it was due to not seeing her for 12 hours or holding her for 4 days? Or maybe it was due to the fact that I had to fit a lifetime of showing my love to you in to such a short time? I ultimately am unsure of the reason why this was the case, but I am happy to report that this is no longer true. Your sister and I share a bond that transcends anything I have ever experienced before, she is a piece of my soul, it is much like the connection I felt with you when I first held you. She came home after 19 days in the NICU and those first couple of months revolved around learning how to take care of her, not getting any sleep because I was sure she would stop breathing in her sleep, recovering from a c-section and high blood pressure, and generally just trying to make it through each day.
Your sister and I spent many days in bed, nursing, I held her while she slept, watching tv, and surfing the internet. I was trying to find someone, anyone, who could understand the pain that I was going through, who could acknowledge it and take it away. Obviously I was never able to come up with someone who could take the pain away, but I did find a great group of women in an online support group who had experienced the same journey that I had of carrying a fatal pregnancy to term. They were my lifeline at that point and I spent hours pouring over their stories and experiences. I am grateful for these women and am proud to call them friends now as we have spent over 2 years getting to know each other, even though I have never met any of them in real life.
The only things I actually accomplished those first months were to make sure I showered every day and taking care of your sister. And honestly, taking care of a newborn is a monumental task, especially a premature newborn. I had to get up every 3 hours and nurse her, which felt like a huge task even though I wasn’t sleeping anyway. I would just sit in bed and cry, begging her to stop crying so I could sleep, even though I wasn’t going to fall asleep myself. I would stay awake listening to her breathe, sure she was going to stop breathing. This was despite the fact that was hooked up to an apnea machine that monitored her heart rate and breathing. I developed a pretty unhealthy attachment to your sister, never allowing anyone to stay with her or give myself a break for even 10 minutes. I was afraid that no one else would be as vigilent about making sure that she was still breathing, that she would somehow slip away if anyone else took care of her. This only exacerbated my grief as I never had any time to myself and was excessively tired. The first time I let anyone else take care of her was on our anniversary, when you sister was 8 months old, and even then we only left her for 2 hours.
I am eternally grateful that I had your sister there to get me through each day, but it did add another complicated layer to my grieving process. I spent many days crying when I was pregnant, wondering how I was going to handle one baby dying and one baby living. I was scared out of my mind that it would break me and I would not be able to be a good mother. The journey was not easy, but we did it, we made it, and now your sister is a happy and healthy 23 month old.
Many tears fell on her sweet head as I held her, in so much pain from losing you that I could barely think straight and at the same time thankful that she was healthy. I barely left the house, didn’t really talk to anyone besides your dad, and was pretty much a shell of a person. I dreaded going out in public, waiting for the next person to start small talk and ask me how old Samantha was and if she was my first. How was I supposed to answer that question without breaking down and crying, making the person regret that they ever asked about you? I have resolved myself to never making small talk with a stranger about their children. Not wanting to share and talk about your new baby with everyone is something that still hurts my heart to this day. She deserved that and I was not able to give it to her.
I remember getting packages in the mail for your sister, I was supposed to be happy, celebrating her life, oohing and aaahing over the tiny little girl clothes, but all I could do was sob. Congratulations cards for her were like a stab in the heart reminding me that you were not here and that some people had forgotten that you ever even existed or couldn’t take the time to acknowledge that you existed. And that leads me in to the next emotion that I pretty readily embraced……….
Your death brought about a whole new level of anger to my life. I was angry at everything and everyone. No one could do anything or say anything right, I needed an outlet for my anger so I pretty much spread it out among everyone I knew.
Why did everyone else get to have a happy ultrasound showing a healthy baby and I got to be the only person I knew who was told that there baby was going to die when they were born? Why me? Why us? What had we done wrong?
And if anyone even uttered the phrase “everything happens for a reason” or “look on the bright side” I wanted to scratch their eyeballs out. I am pretty sure you wouldn’t tell a mother whose child was dying of cancer that everything happens for a reason, so why in the hell to you think it’s ok to tell me that my child was dying for a reason? Not that I would tell someone that it was inappropriate and hurtful to say something so ridiculous to me. That saying still kills me and I dare anyone to say it to me now, it won’t be pretty. And looking on the bright side is appropriate if your dog dies or you get fired from your job, but having a child die pretty much overshadows the bright side of things in your life. Of course your sister made me beyond happy, but it did not take away from the fact that you died, or somehow replace you and make me forget about you.
I still have my days where I am angry at the world and question why I was chosen for this, then I finally was in a spot where I had felt like I moved past that stage until I had a miscarriage a couple of months ago. Really? Does the world hate me or something? I desperately need and want a healthy pregnancy, but I had to endure the very scary and painful process of a miscarriage 18 short months after your death. Everyone was telling me how this pregnancy was probably going to be smooth and easy because I deserved it. Another slap in the face. There are no guarantees that because we “deserve” something based on our past that it will actually happen. The hardships we have already endured don’t mean squat when it comes to us being able to have a healthy pregnancy. Just because we “deserve” it does not mean it’s going to happen. Unfair doesn’t even begin to describe how I feel about losing another child. I hope you were able to welcome your younger brother or sister with open arms into the beautiful Heaven where you reside.
Prior to learning of your condition I had never heard of or met anyone whose baby had been given a terminal diagnosis in utero. I thought once you made it past the first trimester and didn’t have a miscarriage then everything would be great. When we found out about your condition I searched and searched for other mothers who were in the same situation as myself, I couldn’t find many. After all, how many women get pregnant with twins and find out one has a fatal condition? Not many. I did take comfort in finding other women who had carried a baby with a fatal condition, but I knew no one in real life who had dealt with the before, I only found those women online. And none of them had dealt with a twin pregnancy.
I withdrew in to my own world, afraid if I talked with family or friends about you or how I was feeling they would unintentionally say something that I would find offensive, so I mostly kept to myself. There were many tears shed at home, but never in the presence of family or friends and certainly never out in public. I am terrible at confrontation or sharing my feelings so I did lose some friends because I was not honest about how the things they said or did offended me or hurt my feelings. I do regret that I never let them know and just pushed them away instead, but at that time I was not able to articulate very well how I felt. I know I wasn’t very easy to deal with considering I would not let anyone know what I wanted or needed from them and I have to accept the fact that I am partially responsible for these friends leaving my life.
Many people found our situation uncomfortable and weren’t sure what to do or say. I am sure that friends could sense that saying “congratulations” about Samantha or talking about her made me uneasy or most of the time I couldn’t talk about Tyler without crying, so both of the topics were avoided. I truly understand that because I still find myself at a loss for words when something tragic happens to a friend. I have to force myself to face the uncomfortable situation and make myself say something. I understand how it hurts when people say nothing or totally ignore what happened. This is one thing I am trying to get better at.
I did make some new friends through a breastfeeding support group I attended at the hospital I delivered at. I am eternally grateful for these two women and am not sure where I would be without them. This weekly support group was a safe place for me to share my thoughts and feelings and many tears were shed there. I am afraid I would still be laying in my bed, crying, if I hadn’t found this support group. It forced me to leave the house with Samantha and actually talk about how I was feeling. Many people have wondered why I don’t talk about how I am feeling, but rest assured I was talking to someone, maybe just not you. I find it easier to open up to people that I had no history with, which may seem weird, but like I said before I struggle with sharing my feelings.
I am grateful for the friends who have chosen to ride out the storm with me, even though I was a terrible friend. You held strongly to the belief that I would one day resurface and were there when I did. Thank you so much.
I am now not nearly as lonely and am able to enjoy my friends and family, can enjoy talking and laughing again, and am not afraid about random strangers coming up to me and talking about your sister and asking if she is my first. They may feel extremely uncomfortable when I tell them that she had a twin brother and he died the day that they were born, but oh well, maybe they should learn to not ask questions if they aren’t prepared for an answer like mine.
One of my favorite sayings I have come across regarding talking about the death of a child is from Elizabeth Edwards, who lost her 16 year old son in a car accident.
“If you know someone who has lost a child or lost anybody who’s important to them, and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them. What you’re reminding them of is that you remember that they lived, and that’s a great, great gift.”
I have a deep level of sadness that I believe will always be a part of me. It doesn’t stop me from having happy moments, or happy days, or enjoying life, but it is always in the back of my mind. I spent many days after you first died wondering how I was ever going to make it through life feeling how I did, how I was ever going to be able to be happy again, when would this pain end, and why did this have to happen to me. I can now go weeks without crying, but will still have weeks where I cry every day. These tears are mostly in the car as I drive to work, thinking about various things like how you would look now, how hard it was to say goodbye, how in the world am I going to explain to your sister that you died, thinking about the close relationship she is missing out on with her twin brother, and how I desperately wish there was a different end to our story with you. Acceptance of the fact that this is our story and you died has been very, very difficult and I still struggle with this daily.
Our therapist thought I might have Post Traumatic Stress Disorder and I underwent some specialized therapy sessions for that. I also took antidepressants for a couple of months after you were born. They both seemed to help me get through the toughest times after you died. I am a person who would normally not choose to take pills, but depression is real and it hurts terribly.
Your daddy keeps telling me that he wants to see me happy again. I try so hard, but sometimes it’s just not possible. I am hoping that with time and participating in things like this Illuminate class will keep me moving forward in this grieving process. I am happy and am able to smile again but like I said before the sadness will most likely always be there, at least for now.
Many people have told me how strong they think I am. Honestly though, it wasn’t a choice that I got to make, it was the only option I had. I had to get out of bed every day and take care of your sister, despite the fact that I was deeply depressed and wanted to do nothing more than lay in bed with the covers over my head. Life had to go on, I had to participate, there was no other option. Many days I felt like I was just going through the motions, simply existing while everyone else around me didn’t notice how dark I felt. I tried hard to shield everyone around me from the crazy emotions and thoughts that were swirling inside of me. Probably not the healthiest way to deal with it, but that is what worked to get me through each day I had to learn how to grieve while still being happy being with Samantha and watching her grow. She deserved it, she was worth it.
Overall, I feel like I am doing very well considering everything we have been through in the past two years. There are many things I know I still need to work on and get through, but I am getting there, one step at a time. Sometimes it’s two steps forward and one or maybe ten steps backwards, but I keep trying. To honor you and your sister, I keep trying.
It was my job to protect you and I couldn’t. I wasn’t able to make you better, to fix everything that was wrong. I also wasn’t able to stay pregnant until I was considered full term. I know that that is no fault of my own, but giving birth prematurely makes you feel like you did something wrong, that it could of somehow been prevented. In reality, my body could no longer handle the strain of growing so quickly and being so big and eventually said no more. I couldn’t have done anything different. I took Indomethacin orally every four hours, had a pump with a needle in my thigh to supply my body with a constant stream of Terbutaline to slow the contractions, hooked myself to a machine for an hour twice a day to monitor contractions, and lay in bed or on the couch all day long only getting up to pee or get something to eat. The reality was that preterm birth was inevitable and was totally out of my control, which absolutely sucked.
Your sister has delays in her speech and is currently in speech therapy. I can’t help but wonder if it would have been different had she been born full term, had my body been able to stay pregnant, or if I wouldn’t have been so depressed when she was first born. She is making great progress in therapy and should eventually be caught up to her peers, I hope. But, there is still that inkling feeling of failure because I was not able to stay pregnant.
We won’t even touch on the fact that I feel like my body is failing me because I have been pregnant twice, with 3 babies, and only have 1 living child.
I have a deep fear that something else terrible awaits our family. Someone else is going to get sick or die. As I have told my husband many times before that if anything else happens I don’t think that I will be able to continue. This anxiety that lies deep within my brain that I have a really hard time shaking. I don’t want to live my life in a constant state of fear, but when you have experienced something so statistically rare it is easy to focus on the fact that another statistically rare event is going to happen to happen again.
Samantha is her name and bringing happiness to our world is her game. This girl is a gem, gives hugs to everyone she knows, blows kisses goodbye, loves animals and dancing, hates vegetables and getting her hair washed, and from what I can tell is totally unaffected by the grief that has permeated our house the last 2 years. It’s hard to not be happy when you have a crazy toddler running around your house, constantly learning new things, and flashing her silly grin.
I remember wondering after you first died if I was always going to hurt this intensely or ever feel happiness again. I do feel happy again and the pain has subsided to a dull ache within my heart. It was something I could never imagine was going to happen and it has, thank God, because I couldn’t imagine still feeling that amount of pain now. I wouldn’t have survived.
Now that she is older I save my tears for when she is asleep or not with me. I don’t want to scare her or think that mommy is always sad. She makes me happy and so very proud.
Watching her grow older is bittersweet as I always imagine what it would be like to watch two of you chase after the dog, or have to get two of you dressed in the morning, or listen to two of you do the “momma, mom, ma, momma, dad, da, da da” in the morning to let us know you are awake. But, I work very hard on separating the sadness of your death with the happiness of watching your sister grow. This is especially hard on her birthday, considering it is also the day that you died.
Your death has taken a toll on our marriage, in some good ways and some other not so good ways.
I have come to realize how intensely we love each other and how ridiculously bad at communicating we can be. What never fails, though, is that I know your daddy will always be there to catch me when I fall, despite the fact that he takes the brunt of my lashing out when I am feeling sad. He will hold me when I am crying, push me to share my feelings, and love me no matter what I say or do.
He is also a great father to Samantha and I love to watch them play and learn together. She has taught him a lot about how to take care of a little girl! Your father has grieved intensely over your death and I hate to see him sad, but it reminds me how deeply he loves and cares for you.
It has been difficult to wrap my head around trying to complete this assignment and tell our story in a succinct fashion all the while capturing the crazy rollercoaster journey we have been on. I look forward to continuing to share more of your story. After all, you deserve to be shared with the world.