Where I’ve Been

Posted in babies, genetics, new baby, pregnancy by

I haven’t been around the blogosphere for several months now, but I promise I have a good reason for it! After the Capture Your Grief challenge, I found that I needed a little blogging break. Meditating on grief every day is a really emotionally trying exercise. Then, I got some news that made blogging in general…complicated.

I’m going to put a *TRIGGER* warning for other loss moms reading because I think I would want one. I’m about to write about a new pregnancy and a new baby.

 

 

 

 

 

 

 

So if that’s not a spoiler, I don’t know what is. Zach and I are expecting a new baby boy in August 2015! We are thrilled (!!!), but the first few months were quite full of fear. As I’ve written in the past, becoming pregnant poses a substantial risk of more loss. There was no way for us to tell until about 12-13 weeks how this pregnancy was going to turn out. Of course, even now at 16 weeks pregnant, there are no guarantees. We are very hopeful for this baby, but we are no strangers to loss. We were fortunate that we know the genetic mutations that Owen inherited from us, so we were able to test for them very early on. I underwent chorionic villus sampling (CVS) at 11 weeks so we could look for those mutations in this baby. While we waited for results, we had two very promising ultrasounds showing normal length long bones and hands with only 5 digits each. Since Owen’s long bones and hands were pretty clearly atypical early on, that gave us some relief. We got our final results at 13.5 weeks which told us this baby is free of EvC! He is a carrier, like us, which should not affect him in any way.

I had (have) a lot of conflicting feelings about pregnancy the second time around, but I think that is another post for another day. In the meantime, here’s our new little nugget:

 

baby

 

 

 

Day Twenty Seven: Express

Posted in babyloss, recovery by

I think it’s safe to say I was generally bad at keeping up with the challenge this month. It was surprisingly difficult to spend each day contemplating my grief and then reflecting on it enough to compose a well thought out post, so I gave myself permission to blog when I wanted to, participating as I felt inclined. I actually did feel…guilty?…that I had committed to participating and then failed, but then I read a note I wrote last week to another bereaved mom. I encouraged her to be kind to herself, to do what she felt comfortable and right about in moment. I told her that sometimes practicing self-care is more necessary than caring for others or keeping up with commitments when we are grieving. So I took my own advice and let the guilt go. I didn’t keep up with each challenge, but I did the ones that resonated with me, which is as much as I would ask of anyone else. So good for me!

There have been days this month that I didn’t post because I didn’t feel the subject of the day applied to me (music and journal, for instance). I felt guilty about that, too–do I not have enough grief to fill up a journal? What is wrong with me that I can’t spend so much time with my grief? But I know that’s wrong. I could grieve forever, of course, but I don’t want to meditate daily on my grief anymore. I am at a point with my loss that I can sometimes think of Owen without hurting, and it feels healthiest to let myself grieve when I feel so inclined but to also let go of grief if I need to.

I know just from having friends with kids that there’s lots of guilt and feelings of obligation in parenting. I don’t think parenting a dead child exempts me from that. Sometimes I talk to other grieving mothers and think: why don’t I want to make crafty artwork to commemorate my baby? Or: she seems like a  better babyloss mom than me. That’s ridiculous. Not only can grief over a dead child not be placed on a continuum, but I’m also the absolute best babylost mother to my lost baby. There’s no one better to grieve my baby than me (and Zach, who is all too often left out of the conversation in our real life, I think), so every way I choose to grieve him is right and good, even it means giving myself a break every once in a while.

 

Day Twenty One: Relationship

Posted in babies, babyloss, pregnancy, recovery by

Owen's poem

One of my midwives wrote this just a few hours after she delivered Owen. She brought it to us, along with flowers and postpartum supplies for me, the day after we got home from the hospital. When I saw the date, I realized she had gone home from a very long, emotionally difficult shift with me (I think 24 hours?) and devoted even more time to our grieving family by writing a poem to my son. It is one of the most beautiful things anyone has ever done for me. I’m not sure she realizes it, but by putting this on paper, she also helped me to have a reminder of Owen’s most special moments–I had no idea Owen reached for me as I reached for him, for instance.

There aren’t many people in my life who had a tangible relationship with Owen. Many people know him through Zach and I, of course, and experienced his life before birth, but relatively few people ever met him. It’s pretty much just me, Zach, Anika, our parents, and some very close friends. We had a few nurses who I know were impacted by us, and I know they remember Owen, which means so much to me. There’s something special to me about knowing that Anika loved Owen and saw how special he was. I am so glad that the first hands that held him belonged to someone who could appreciate his beautiful, short life.

I’m  thankful for the relationships I’ve formed with my midwives through my pregnancy and Owen’s life and death. Babyloss isn’t easy, but it is surely more bearable when there are other women there to support you. I am even more thankful for the relationship my midwives formed with my son. They protected our time with him and helped to honor his life, no matter how brief it was.

Day Eighteen: Gratitude

Posted in recovery by

home

It’s actually not that hard for me to feel grateful for the good things in my life. Even in the first few days after losing Owen, I would often think how lucky I was that Zach and I had each other, that we had friends to feed us, pets to cuddle, and an endless supply of mindless TV and video games to occupy ourselves when we couldn’t handle another minute in our real life.

I’m thankful for so many things: our warm home full of love, our awesome cats and dog that provide endless entertainment, a job that I like and feel gratified by, new video game releases, an able and healthy body, Ikea and Target (trivial but true!), fall days with just the right amount of chill. So many things.

Day Fifteen: Community

Posted in babyloss, recovery by

Wave of Light

October 15 was the Wave of Light. We lit our candle for Owen at 7pm and left it burning for the rest of the night. Another babyloss mom who I know from the internet lights  a candle for every other baby she knows in addition to her own son, so Owen had a candle lit on her table as well. My facebook newsfeed was full of light that night, which makes me so very happy.

Day Fourteen: Dark/Light

Posted in babyloss, recovery by
little family

“Your joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears.” –Khalil Gibran

When I announced Owen’s birth and death to my online community of other mothers carrying very sick babies to term, I told them I was so happy but so sad all at the time. I called myself “the happiest kind of sad”–overjoyed at having met my Owen and proud of how beautiful his life was but also weeping for his loss and how empty we were without him.

Even now, I look at pictures of Owen or watch his videos and feel filled with gladness that I knew him, met him, and loved him. Literally in the exact same moment I also re-experience the fresh grief I felt when I had to give his body away. I know that as soon as I put the pictures away or turn the video off, Owen is gone again. He will never be mine to hold. I am both full and empty, brightened by knowing my son yet forever in darkness because his light was so fleeting.

Day Thirteen: Season

Posted in babyloss, pregnancy, recovery by

Owen snow

The spring brings Owen’s birth and death to mind, but I associate fall and winter with him the most. When we went into the hospital, the weather was still cool and showing no signs of spring. When we left the hospital without Owen, it was beautiful, sunny, and warm. I told Zach on the way home that it felt like Owen had brought the spring to us.

I suppose that also means to took the winter with him. Chill reminds me of Owen’s life with us: bundling myself up and not being able to find a coat to cover my belly as fall turned to winter, traipsing all over for appointments with specialists on icy roads, hibernating with him during our January snowstorm.

We took a beach trip when I was 14 weeks pregnant to celebrate the last bit of warmth. Two weeks later, fall had fully hit with changing leaves and cooler temperatures, and we were being told that Owen (who we had just recently named and felt move) was going to die. Winter came, and we got good news. Owen might live. Winter is the only hopeful time I got to experience with Owen. It’s the only season we spent planning for his life rather than his death. I wrote his name in the snow during the snowstorm so that if he lived, I could show him that we had been loving him and planning for him since before he was born, that he was a part of our family even before birth.

Day Ten: Support

Posted in babyloss, recovery by

zach and me

 

“We’ll just do our best to make every decision out of love.”

Zach told me this when I was in constant distress over what to do for Owen when I was pregnant. He continued to remind me that this was our guiding philosophy for Owen’s life when I was feeling unsure of our decision for compassionate care instead of forcing aggressive medical intervention after Owen died. We’ve always discussed this concept–making every decision with love as our first priority–in relation to our children, but Zach also cares for me with deep compassion. There isn’t a time in our life together when I have ever doubted that Zach would support me with all his might (and I him).

When your baby dies, you are both weak, and you have to hold each other up while also knowing that sometimes one of you will break harder. I’m so lucky that Zach knows this. I’m so lucky we can do this for each other.

Day Nine: In Memory

Posted in babyloss, recovery by

Owen's tree

This is Owen’s little tree.

Because we had Owen cremated, there is not currently a physical space where he is memorialized. As I wrote yesterday, I’m glad that we will have a memorial space in our home, but I also wanted a spot in our community where Owen could be remembered. It is important to me that Owen’s life is acknowledged in a public way. To that end, Zach and I chose to have a tree in our local botanical garden dedicated to Owen. When we decided to have him cremated, I knew I would miss the fact that we didn’t have a plaque that would record his name for the outside world or a location where we could go and say to people “We did this for our son.” I am glad he is home with us, and I feel confident that this special tree space will serve my need of a public memorial space.

When we met with the Director of Giving at the Botanical Gardens, she took us for a walk around the garden to scout trees and locations. At the beginning of the tour, she showed us a spot that, though currently just forest, is being turned into a children’s garden with activities and an amphitheater for children’s shows and events. Owen’s tree is directly across from where the new children’s park will be, which is perfect to me. I would have loved to take him there one day. There’s also a really beautiful fountain and bench that I am sure we will enjoy with our future family. It is on a pathway, so I hope people who pass by will notice that it is dedicated to our baby who is very much loved and gone too soon. If people who see Owen’s memorial stop for just a second and hold his name in their thoughts, then realize how precious their little ones are, I will be happy.

Owen’s little tree doesn’t have a plaque yet, but hopefully it will soon.

Day Eight: Resource

Posted in babyloss, Ellis van Creveld, pregnancy, recovery by

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!)