When we first got Owen’s semi-lethal or definitely lethal diagnosis and made the decision to carry him, I turned to the internet right away. Surely, there has to be people who have done this before, I thought. I found a ton of blogs, which were a huge help, but I wanted to talk to people who were doing this now. I found a handful of online message boards for women who were/are carrying babies to term with very poor or fatal prenatal diagnoses. What a port in the storm that was. I had felt so alone, wondering why were facing this unimaginable pain, and here were people who would be doing it with me. I hated that any of us had to be there, but I was so glad for the company.
Since Owen’s prognosis was unclear, I also sought support from groups dedicated to diagnoses of dwarfism and even found a specific website for parents of EVC babies. Hearing the stories of other parents who had received tentative diagnoses gave me hope. Some of the children had not lived very long, but knowing that we weren’t facing a 100% lethal diagnosis was comforting. The EVC group was especially useful since I was able to reach out to some of the parents and discuss prenatal findings and treatment options. I also received the contact information for Dr. Philippe Jeanty, a specialist in prenatal diagnosis who had seen cases of EVC (lots of doctors, even experienced specialists, haven’t seen EVC before). He reviewed our scans and consulted with our perinatologist to verify that Owen likely had Ellis van Creveld syndrome.
After Owen’s death, I continued on in the Carrying to Term board and joined a private support group for women whose babies have died. I started this blog and linked up with other bereaved moms (you can find them on the right). I stumbled upon Glow in the Woods and Still Standing Magazine one day and breathed a sigh of relief because I had finally found others who were giving voice to this pain with such eloquence.
It was(is) a hard journey, but I was never alone. I certainly felt alone and lost at points, which I think is inevitable, but I never felt at a lack of information. I think it’s unavoidable that there will be lonely times when carrying a very sick, possibly terminally ill, baby. No matter the amount of resources or support, no one else is carrying your baby or making life and death decisions for him, but it is overwhelmingly comforting just to be accompanied on the journey.
(no photo today–again! sorry!)
I don’t really have a sacred place that I go to be with Owen. I certainly have sacred things, sacred rituals, but there’s not a place I go to remember him or be with him (I remember him all the time). Perhaps this is because we had him cremated. There’s no grave site to visit. His ashes are in our house, just like we wanted. In the beginning, I used to carry his ashes with me from room to room because I couldn’t stand the thought of him being alone. We created a little altar in our den where I put him during the day. We called it our Owen shrine. I used to go there to visit with him, but we’ve been doing some renovating and redecorating of our house, and the Owen shrine has been gradually dismantled–his ashes and photos in our living room, keepsakes and cards put into memory boxes, artwork moved about the house so we have remembrances of him in every room.
I like that he is represented in every room of our house, but I also liked being able to have a special place to sit with his memory. Zach and I have tentatively planned to turn one of our spare rooms into a library, with a space designated especially for Owen’s special things. I’ll be glad when we have that. I’ll like having a special place, I think.
(no photo today)
I read a lot; I always have. It’s surprising to me that I haven’t read more babyloss books, but it has never felt quite right. Before Owen was born, I considered reading Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life by Amy Kuebelbeck. It tells the story of parents who chose to carry their pregnancy to term after finding out prenatally that their son had hypoplastic left heart syndrome. I put it in my Amazon cart a few days after we got Owen’s probable HLHS diagnosis, but I couldn’t bring myself to actually go through with the purchase. Kuebelbeck and her husband chose comfort care for Gabriel, and even though Zach and I were heavily leaning toward choosing comfort measures only for Owen, I couldn’t bring myself to purchase a book in preparation. It felt like giving up. Kuebelbeck also wrote A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief. That book is still sitting in my Amazon cart as well.
I did read a lot of books when I was pregnant, but they were mostly mystery novels and detective stories. I read all of Gillian Flynn’s books, and even though I found them grizzly and just a little too harsh for my taste, they were a fine alternative to contemplating the choice to let my son die.
I’ve mentioned before that I sometimes feel guilty we didn’t demand every possible medical intervention for Owen. To clarify, this is not rational guilt. When I am missing him the most (and this was especially true for the early days), I would think, if we had just demanded surgery, he’d be here now. But I know that even if we had demanded surgery and he was here now, he wouldn’t have had very long with us. Objectively, I know that Owen was too severely affected to live, and forcing long-term ventilation and respiration where there were no lungs would have been painful–more painful than I could accept choosing for Owen. Still, modern medicine tells us to fix, treat, cure. We technically chose the opposite, although I don’t see it that way. To me, we did heal Owen. We chose comfort and love, and then death protected him from any pain. To me, we took on all of this grief so Owen could live peacefully.
Loving and Letting Go: For parents who decided to turn away from aggressive medical intervention for their critically ill newborn
I ordered this book a few months after Owen died. It, like the others, sat in my cart on-line for weeks before I finally bought it. It was hard for me to conceive of myself as someone who turned away from medical intervention. It’s the only baby loss book I own, but I’m content that it’s the only one I need for now. Maybe someday I’ll read the others, but today I’m satisfied to belong to a group of parents who took on lots and lots of pain so their babies didn’t have to.
I had sort of a difficult time choosing my photo for today. One, I don’t have very many pictures of myself since losing Owen. I didn’t like being the subject of any while I was losing the weight I gained while pregnant, and since then, there haven’t been very many opportunities. Most of the pictures I have are selfies I took with the cats…not exactly fitting. I asked Zach if he had taken any, and I found one that I knew was perfect for this particular challenge.
I wrote yesterday about how I was afraid when we first decided to carry Owen to term. I thought if he died, we’d never be happy again. I had read some frightening statistics about the difficulties couples face after losing a child, not to mention the individual struggle. This picture reminds me that my fears have not come true. Zach and I are still together, perhaps stronger in some ways than we were before. More to the point, I’m happy. We’re happy.
In the early days of grief, I would have never imagined this was possible. I knew that we were changed irrevocably and life could never be the same. Lately though, I’ve realized that, yes, we are irrevocably changed and life won’t ever be the same, but that doesn’t preclude joy. The first several months of grieving were (are) brutal. It’s a slow process of learning how to be so very sad while simultaneously leaving the house without breaking down. Using such an overwhelming amount of energy just to get out of bed and dressed means there’s not much attention left to be paid toward happiness. For a long time, simply breathing required so much strength. I couldn’t figure out how we’d ever genuinely laugh again. But now? I’ve learned to integrate my grief and Owen’s memory into my day. It’s not always seamless and required a lot of practice, but someday I’m sure I’ll do it almost effortlessly. I’m already able to belly laugh without regret. I’ve learned that feeling delighted with life doesn’t mean I’ve forgotten him or disrespected him. Loving him and being his mother allows me to feel everything more deeply, including joy. Owen died, but he also lived. I will always find joy in that. I will always find joy.
Edited to add: A selfie with one of the cats because cute.
Who was I before this experience? Before losing Owen, I took a lot of delight in the everyday stuff, and I liked to quest for adventure. Even though life was busy, I did a pretty good job at taking a breath and enjoying the present moment wherever I was. I tried to find the wonder in things around me. For context, this photo was taken the day Zach and I went went with some friends to help shear some alpacas. Admittedly an odd activity for people who don’t routinely engage in animal husbandry, but I had a grand time. I had never seen an alpaca before–interesting creatures, those guys. I was fascinated. Being so carefree and able to make fun wherever I found it is something I loved about myself.
When Zach and I were weighing our options after receiving Owen’s tentative diagnosis, I remember thinking that if we chose to carry the pregnancy to term and he died, we would never be happy again. Aside from his death, that was my biggest fear. I was worried that I would lose the ability to be delighted. I thought life would become the period before Owen when we were able to laugh easily, and then the after-Owen time, when we would be over-burdened by death and missing him. If you had asked me if that fear came true a few months ago, I probably would have said yes. I’m not sure that’s the case now, fortunately. Returning to a joyful state is very much like waking up. I’m groggy and slow to find joy these days, but it’s there. I’m confident that I will fully reawaken someday.
I took this in August when I was photographing my Baby Loss Before and After and ended up not using it, which I felt sad about because I wanted to show off Owen’s heart. What a perfect opportunity!
Soon after Owen died, I got this heart made by A Heart to Hold. It was made in honor of another lost son and gifted to us, and it weighs 7 pounds, 14 ounces–Owen’s birth weight. I love holding it, especially when I am feeling particularly empty-armed.
Today’s prompt was also inspired by E.E. Cummings poem “i carry your heart with me.” I (attempted) to read this Owen’s memorial service so it is especially near to my heart. Owen is gone from this world, but I carry him every day in my heart and in my mind. I am honored to do it but desperately sad that I must.
“The sun reached out his hand to me and touched my face. And so my healing began.” –Marjorie Pizer
October is Pregnancy and Infant Loss Awareness Month. I was vaguely aware of this prior to losing Owen since I worked in a NICU and talked to a handful of moms there who participated in various events. Now it’s my turn, I guess. I’ve decided to participate in the CarlyMarie Capture Your Grief Photo Challenge. Hopefully I’ll be able to keep up. I’m already behind by one day, so let’s just pretend I posted this yesterday!
My sunrise photo isn’t quite sunrise. I took it at my clinic after being at work for about an hour, but it’s a wonderful image of the sun coming through a really beautiful tree outside of my window so I’m going with it. Plus, I’m not a get up at sunrise kind of girl.
Sunrise is a time that is dear to me though. When Owen was dying, we were wheeled out of the the NICU (he was in my arms) and into a Labor & Delivery room with a wonderful view outside. The sun was rising over the hospital, and I was so happy that Owen got to experience sunlight. I haven’t been up at sunrise since that time. For the first month after he died, I would set my alarm for 3:08 am (the time of his birth) and go sit with his ashes and meditate on his life, but I never really felt compelled to reawaken at the time of his death. Because I associate Owen’s death with sunrise, I always feel like he is here with me a little more when I feel the sun warming my skin.