J’écris en ce texte en anglais parce qu’il présente des réflexions que j’ai eues à la lecture de textes et de blogues en anglais…
Since Paul died, I’ve searched the internet looking for online resources and spaces that did not involve angels. In the weeks following his death, I travelled to Columbia, taking refuge at a friend’s house, far away from all the spaces that reminded me of Paul. I had had a strong urge to leave home, to be away from the river banks where I had taken my last walk with Paul, away from the store we were in when his heart stopped, away from the birthing centre, the hospital. Away, away, away.
I ran away. And found myself removed from the tight support network that had carried me through the first few weeks.
I had been added to a facebook group for parents dealing with the loss of babies or pregnancies. It helped me get a sense that i wasn’t alone but the form most of the messages on that group took was leaving me wanting more. It didn’t really help me to know so many women were taking comfort in believing their baby had become an angel. I didn’t want an angel. I don’t want an angel. I want my baby. My baby, his flesh, his smell, his cries, his sweet face. And then, i wanted to hear from other parents who weren’t satisfied with angel imagery.
I remember when i finally stumbled upon a website that offered just that. It was like a breath of fresh air. How amazing to find this community of parents who were all learning to grieve for their child. I was amazed to finally find this space, especially since we had not been offered any specific support when we left the hospital, after Paul’s death. And i had not contacted any of the resources that were available in my city. I spent a few weeks only reading through posts written by babylost parents in the last six years. Eventually, i started interacting with the parents who are currently writing on this site.
Despite the geographical distance that exists between most of us, i found a sense of community around our shared feelings. It was very much the case when, a few days ago, a mother wrote of her feelings of guilt. I have been struggling with guilt since the second i realized there was something wrong with Paul. As i ran through the pharmacy where he had been nursing, i felt this horrible feeling that i had failed at my job, that i had failed my son. These feelings come and go and morph. Two weeks ago, i wrote:
For me, these days, guilt is …
… wondering why i was so concentrated on small future things — washable diapers, early reading, baby-lead weening — instead of the huge mission i had been given — keeping my son alive and well.
… asking myself why i wasn’t looking at him for a few minutes as he was breastfeeding in the sling, feeling that maybe i could have done something, if only my eyes were on him.
… not being able to respond to « why did my baby die » because i feel so responsible, no matter how many times the doctor says it wasn’t my fault.
… having to live while Paul isn’t here anymore… going out instead of being home, caring for him.
… and so much more.
That hasn’t changed much. But i feel even more strongly that i am so so lucky i do not feel guilty about the time i spent with Paul.
I didn’t particularly enjoy being pregnant (i mean, i liked the idea of it, i loved feeling my baby move, i was excited about it, but i wasn’t feeling overjoyed with being so slow and heavy and tired). I had a difficult delivery, with more than fifty hours passing between my waters breaking and the moment Paul was born, via emergency cesarean. During the time after the delivery, when i couldn’t meet my baby because he was temporarily under observation, i got scared i wouldn’t be able to form a real bound with him. I was scared, yet when we finally met, everything went so smoothly. Over the next 24 hours, i fell in love more and more deeply. And over the next few weeks, as we adjusted to this new family life, i felt so lucky. Lucky to be caring for a healthy and happy baby. Lucky not to be dealing with conflicting feelings towards him (with the exception, maybe, of this one night when he kept waking up and feeding him was hurting me.)
And now, now that he is gone, i feel even more lucky i was able to spend those weeks with Paul enjoying his presence, and loving him without asking myself too many questions. Now i have plenty of time to ask questions. But i am so grateful i was able to spend as much time as possible enjoying every minute of Paul’s life.
I read this article on maternal mental illness after i saw it featured someone i know. Reading these stories or thinking back to other less intense experiences of postpartum depression i have heard about, my hearth sinks. I think of how terrible i would feel now if i had had to deal with even a fraction of these feelings toward Paul. It could have been me, it could be anyone else. Just like the death of a baby doesn’t happen just to others.
It seems crazy to me that in societies where we care so much for the well-being of pregnant women and their future babies — to the point that most people feel perfectly fine commenting on a pregnant woman’s body and her every decision, from her caffeine intake to whether she takes the stairs instead of the elevator — we care so little about what happens to them once those babies are born. There is so little information available, so little screening done, so little support offered…
I feel like we need to speak up about the shortcomings of the support we offer to mothers, to parents, once their babies are born. We need, collectively, to care for each other. So that in trying times, when we are dealing with these immense hardships — postpartum depression, mental illness, intense grief — we find more than online boards to help us survive.
There is a lot here – wow. Like you, I could never be satisfied with angel imagery. I need to read about the realness, the rawness, of child death, because that is what I’m living.
Your guilt comments make me so, so sad. Because I long for that additional burden to be stripped from you, when the heavy grief itself, is almost too much to bear. But, I get it. I have many of my own feelings of guilt, and I know they are not easily assuaged.
The support systems (here) failed us at several junctures. The most critical was the tone set in the NICU, the communication style, that actually had an impact on Zachary’s care. It would take me 5 pages to explain…, so I’ll leave it at that for now. But, secondarily, I believe a lot of the structured support absolutely fell apart once we knew Zachary was dying. Suddenly, we were treated like lepers, by many of the professionals who were previously helpful. Sideways glances, hushed whispers. Even the social worker made ridiculous notes (I’ve seen them in medical records). She didn’t even come face to face and give her condolences though we stared at each other as I walked by. When Zachary was well, she wanted to have coffee with me, talk about how I was caring for myself, in order to care for Zachary. But when he was on death’s door, no support. That’s when I needed it.
The article you linked to was so, so sad and overwhelming.
I think of you and Paul, each day.
Gretchen, thank you for your comments and your thoughts. I also think of you and your boys often.
Our experience at the hospital was mostly « good ». A few of the professionals were not stellar but i felt they did do all they could for Paul and to accompany us (although like i wrote, we didn’t get much institutional support in the following days and weeks after Paul died.) I am sorry you had to deal with a medical team that wasn’t as supportive. Were you able to get support afterwards?
No, the support really dried up once we left the hospital. We could have taken advantage of a support group for bereaved families, but for many reasons, we decided to pursue a different one, unaffiliated with the hospital. And, a nurse did come and pick up my rented breast pump so that I wouldn’t have to go back and into the hospital to return it. I was thankful for that, even though I’ve had to return to the hospital (where he lived all of his days until the end) several times for other reasons – picking up medical records, meeting with the neonatologist to discuss Zachary’s care, meeting with other leadership on same topic. All of Zachary’s best and worst days happened in that place…, it’s hard to be there.
I will say that the neonatologists and the nurses that cared for Zachary, directly, when he was ill and dying, were very compassionate and seemed to be doing all they could for him. The support that was lackluster was concentrated in the day before he was diagnosed with sepsis…, when there was clearly something wrong with him, but everyone sort of treated me like I was over-reacting. Turns out, they were under-reacting. Treating the sepsis earlier could have had a read impact for Zachary’s life. So, that’s the big one. And then, not as critical, but still unsatisfactory, was the way we were treated by those loosely affiliated with Zachary’s care – the social worker, the other floor nurses, etc. – once Zachary’s prognosis turned bleak.
I admit I called my daughter an angel, but it was for a lack of things to call her if that makes sense. I discovered the Mizoku Jizo. He is a Japanese Bodhisattva who protects the babies lost in utero to stillbirth, abortion, and miscarriage. These babies are called ‘water babies’ my daughter was not lost in utero but she was born premature and died before she should have been born. So to me? She has become a ‘Water Baby’
It’s been 7 years and I’m feeling a bit lost. I don’t have Christian beliefs and there is no safe haven for those of us without these beliefs. 7 years doing this on my own without help from people! No groups and things. I’ve joined some Facebook groups but the majority of the posters are Christian and I’m left feeling awkward as they call their children’ Angel Babies and talk about Heaven. And since that is their belief it’s ok but ……. I just don’t feel it. I’m left feeling like a leper in the loss community.. Where do I turn to now?
It is the harder path, i think, to try and make our own.
For the first time in my life, since Paul died, I have wished i could rely on religion to find answers. But i don’t think it is possible to suddenly start to « believe ». What is left, i think, is exploring what beliefs and wisdom can guide us, and who can walk with us along that path… to slowly try to make sense of this senseless situation.
Do you feel like you have support around you (asides from the online grief groups/communities) to accompany you in this exploration?
I was talking with a friend about her childbirth experience, which was a really difficult experience (she says it was actually traumatizing), and how women are encouraged to feel empowered and responsible during childbirth… But if something goes wrong, they get patched up quickly (physically I mean) and then left all alone with her sense of failure and guilt. I think you’re right: the support is missing. The fact that you were left with no support after such a difficult experience is appalling. How could they send you back home with no support? It’s hard enough to get support from our loved ones, why couldn’t you automatically get support from the health system? It would’ve been the logical and sensible thing to do… Aaaargh!