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I am holding both of my babies

By Anonymous.

Right before Thanksgiving, my husband and I received confirmation that I was carrying a baby with a life-limited diagnosis. This means she will likely pass in utero, during birth, or live for a very short period. I found out after my ultrasound turned up a few indicators and we decided to do genetic testing, of course just to rule out anything like that. At this ultrasound we also learned we were having a daughter and although my husband tried to keep it a secret so we could reveal it with friends during lunch, he referred to “her” in the car and it was a most joyous moment for us. I would have been happy either way, but the idea of having a little sister for our son gave me so much joy.

I was calm during the waiting process because of course I thought everything was fine. When I read the abnormal results on the patient portal, I felt something I never felt before. For a few moments, time seemed to stop and everything around me became slower. I could hear my toddler and husband who were in the same room, but they sounded muffled and far away and slow. I stared at the screen and then said aloud “it’s not good” or something short like that. My husband looked at me. He didn’t even know I was reading the results. I don’t remember what happened after that, but there was much discussion. My nurse advocate (who had been in contact with me since learning of some abnormalities on the ultrasound) and OB were soon in contact and sorry I read it on the patient portal. But my husband and I were glad to have had the time to talk with each other first. 

In the aftermath, we told our parents, who all were anticipating a granddaughter. My mother-in-law cried to my husband because she said she already sent a baby girl outfit. I received it a few days later and just calmly folded it back up and put it back in the envelope. When I told my best friend, she burst into tears, and we just sat on the phone crying for several minutes. Everyone was upset. No one knew what to say, although not for lack of trying. 

We had another follow-up ultrasound to get a growth curve for her. During this visit we got a great view of her face and several good pictures. She is absolutely precious and very pretty. This was the hardest visit for us both. Although I loved seeing her, as I don’t know if I’ll ever see her alive, I was also so sad and kept thinking “I’m so sorry my sweet baby”. I am completely unable to help her. It is the worst feeling for a mother. All I want to do is protect her.

After a few more weeks of coming to terms with this news—I am now at 30 weeks— here are some takeaways after discussions with my priest, my family, my friends, my church community, other women who have carried life-limited babies, and of course with my husband. It has been a lot to process.

1) Nobody can really understand what it’s like to carry a baby with a life-limited diagnosis, unless they have been through it themselves. You simply cannot explain it. I feel her move and kick a lot now and there are moments when that feeling can cause me to weep in the blink of an eye. I love her already and feeling her often gives me an immense joy followed by an immediate stabbing of sadness. It’s wild to see so many people commenting so strongly on something they have never experienced.

2) For some or most things in life, you can never prepare yourself fully, but we have to trust that God will be there. We want to have all the answers and plan for every contingency, but this isn’t how life is. We have to deal with what is given to us as it is given to us. As my close friend said to me “God will hold your hand every day. Don’t think so far ahead and worry he won’t be there. Just let him be there for you each day.” This has helped me stay grounded in the present day and to not get 20 steps ahead of where I am right now. It’s easy for my mind to start spiraling as I think about the future, with this and in many things. But if I take each day, I find God is there. I know that there is a huge storm coming which will crash down on me and my family and there is no way I can really prepare for it, but that’s okay. As another friend said: “It’s going to be hard, very hard. But you will get through it.”

3) Although I am helpless to change outcomes, I am still fully in power to love my baby for her entire life. That gift that I want to give my child for many years is not one that is taken from me just because she has this diagnosis. Whether she passes in my womb or after a few minutes or days after birth, I will love her. I will honor her life, even if it is short, even if it is not what I had planned for her. As I have learned from my first child, we are all who we are from the moment we are born, which means we are who we are before we are birthed into the world. All the mannerisms I see when looking back at the newborn videos I can see in my son now. He was always who he was, even if it took me time to see it. In the same way, my daughter is already who she is. Her lack of time on this Earth doesn’t make her any less her or any less unique and I can still fully love her, even if most of the qualities of her remain a mystery to me. 

4) I have refocused a lot of my life on gratitude, and it is such a wonderful shift of perspective, although of course I’m always working on it. It has helped me to stay in the moment and see each day as a wonderful miracle. The crumbs and the noise and the fingerprints on the windows bother me less. I hold my toddler while he is falling asleep and my neck and back hurt and yet I continue to sing him songs as he breathes more deeply on my shoulder.  I will then feel my daughter kick in my womb and I think “I am holding both of my babies. I am singing to both of my babies. What a glorious life this is. Thank you, God.”

5) I am also eternally grateful to have this news before my baby’s birth and have been greatly humbled by my very caring medical team and the technology used these past few weeks, as I had once wanted no medical intervention or tests (and was quite adamant about it!). I keep wondering if God would want us to know these things beforehand or if it’s more natural for us to just come to grips with it as it happens, but I can never know that. All I know is being able to name her (and refer to her by her name), plan for her arrival, plan the memories I will want to make with her, plan the place she will be laid, have the time to make her a beautiful casket and a blanket to wrap her in, etc. has brought a great deal of calm and peace to this situation.

6) The counter to my previous takeaway is that we can never really know the outcomes of anything. Every single thing we plan is in God’s hands and even when we are pregnant with a “healthy” baby, we never know what lays ahead. We have to always live in the current moment and in gratitude for all that it brings. This is the deal we make as the co-creators of life. We take a huge leap of faith when we take on this role. 

7) In my grief, many of my thoughts have centered around Mary, mother of Jesus Christ, the Theotokos. Upon understanding what was to happen to her son she said, “be it unto me according to thy word”. I take these words with me every day. Mary knows our pain, the intertwining of sorrow and joy that is motherhood. She has been through it all with her child and in the end, it was good. God is good. The life he created in me is good and pure. And as God has already given us a path to eternal life through his suffering, my daughter will walk that path and I will do my best to walk it too and be with her again. 

8) This experience has been a divine gift in practicing how to die to my own will. As an Orthodox Christian, this is a daily practice I try to do this joyfully (hopefully). Doing what my ego may not want me to do and going against my will has of course always been a challenge. But I try my best to serve others when they need it (even when there are other things to do) or apologize to my spouse (even when I think I was right!) or tend to my child in the middle of the night when he needs me, but all I want to do is sleep. There are so many ways we can learn to let go of our self-will and ego, but this experience for me has been the biggest opportunity for that. Each day that I am more uncomfortable with the pregnancy and want to spiral into thinking of how I want this to be, I release it all up to God: “let your will live in me, instead of my own”. 

9) I have so much compassion for women who choose to terminate the pregnancy because there is a lot of fear associated with this diagnosis and in that, avoiding or ending a problem is a strong defense mechanism. This is especially true for women who have little or no faith that God will walk beside them during this trial. How utterly terrifying. There are some people who have asked me why I don’t terminate because they think by doing so, it will save me a lot of pain. But to this I have two thoughts: 1) will it really reduce my pain? And 2) even if it did reduce my pain, is that a valid reason to do so? I think the answer to both questions is no. I don’t believe this is a problem we can really “get rid of”. Perhaps counterintuitively, “avoiding this problem” and not looking this fear square in the face and choosing love instead, seems like something that would haunt us forever. I am choosing to carry my cross, no matter how painful. I want to look back and know that for every moment of my child’s life, I protected, honored, and loved her. I will love her till the end, regardless of how her life ends, and I think that ultimately, this saves my humanity, with every feeling it entails – including pain and sorrow.

10) There is the tendency for me spiral into despair, which usually goes something like “Why me? Why her?” Yet, when I consider the world we live in, I realize that none of us escape this life without having our own cross to carry. This is just mine. For others, it may be a much different shape and size, but everyone has one. During this journey, I’ve already met others who I see have a cross like mine and who have realized they can offer some piece of wisdom to help me carry mine. 

11) We cannot replace a real-life community with an online one. Having people who have surrounded us during this time, loved my family, and hugged us and cried with us has shown me that there is no replacement for people standing with you and looking you in the eye. I am wealthy beyond measure because of this. As my priest has said many times: “it’s about the people”. We must cling tightly to those we cherish and support each other in carrying our respective crosses. This doesn’t discount the online communities we can foster if we seek genuine interactions. However, I urge everyone to move those friends from the online sphere to real life as often and as quickly as is reasonable. 

In short, my daughter has taught me so much about love, faith, and trust. She has taught me what to truly value and where to place my hope. She has already changed my life.