Grief and the death of a baby
A speech shared at
Annual Remembrance Service
Hope Bereavement, Geelong West Town Hall
2nd December 2013
Our son, Jasher died on the 10th July 2011 at home and a few days later, I was diagnosed with postpartum cardiomyopathy, a life threatening form of heart failure that happens as a result of pregnancy. It was undeniably, one of the hardest times of our lives; losing a baby but also facing the prospect of losing my own life. Everything felt pointless. I had lost Jasher and the pregnancy had affected my heart, which had enlarged and was only pumping out half the blood it should have been. I had 20 litres of excess fluid in me and my kidneys were failing. I had always been healthy, hardly even caught a cold, and here my body was failing me. I had to be kept awake because when I dozed off, I stopped breathing. My vision also went haywire for about 30 seconds.
Even in the midst of all this, I wanted to be pregnant again. Here I was with a heart that only half worked, asking the doctors, what would happen if I got pregnant. I don’t think at that stage the seriousness of my condition was explained to me, but the last thing I wanted to hear was doctors and nurses telling me to get used to a medicated way of life or extended family members tell me, ‘no more babies’. I am sure, they were all trying to help but having our whole world collapse on us at once, just getting through the day was enough.
I spent a week in hospital. I had lots of time to think and it was strange to call back home and hear my children on the other end getting breakfast and doing things. Life went on, the world kept spinning but I was in a different place, physically and emotionally. What was an ordinary shift for the nurses was for me, a huge, life changing experience. I was watching my life from the outside, as though I was a stranger. I had never been away from my children or husband before and to not be able to come home, to be with them was really difficult. It was at this point that I knew that life would go on, even if I died. Yes, it would be difficult for my family but they would manage. The weight of responsibility lifted from me and saw life was more than being a mother, business owner, consultant, I could just be me. I didn’t have to do anything and my whole day was organized around blood pressure and weight checks, medication and meals. In a strange way, it felt a bit like being on camp.
It’s natural when something bad happens to think, ‘why?’ or ‘why me?’ and search for answers. It’s natural to rewind your life in your mind, and play out various scenarios, decisions that you could have changed, that may have changed the outcome; firstly going back days, then weeks, then months, then years…till you can rewind so much of your life, that you realize that so many things in your life were a result of who you were at the time and the experiences and knowledge you had at the time, that you can’t really change the outcome. You know what you know now because of what happened, but you wouldn’t have known then to change anything to avoid that outcome because your experiences led you on a certain path. And you really don’t know what decisions you could have changed that would have changed the outcome anyway. I also came to terms with the reality that the other scenarios, could have ended in my death. Imagination is a powerful thing but it can also lead to psychosis – a total loss of contact with reality.
I found myself thinking of Jasher, every moment of the day. When I was in the cardiac ward, I imagined him in the maternity wing below but that wasn’t my reality. In body, my baby was absent, yet when he died, he felt closer to me, to my thoughts, than all my living children. I felt my mind wander backwards in time, to the point that I felt like I was a shadow, seeing life unfold before me but being detached from it, watching and feeling that somewhere, I’d missed a turn and was on the wrong road in life but I didn’t know how to get back to my life. While I was in hospital it was really easy to live that alternative reality but the prospect of going home, of having to face the memories of finding Jasher dead required a lot of mental adjustment. I wondered if I would ever get back to life, to find joy again or if everything we ever did, would be tainted with the sadness that Jasher was not with us.
Death of a baby also brings with it a subconscious or conscious judgement by other people. We are raised in a Judeo Christian world with New Age ideas of karma and people judge you, sometimes without really understanding why; when we suffer loss, it’s because we deserve it or that God has placed a judgement on us. However, in the animal world when a baby animal dies, it might be for a number of reasons; poor maternal health, environmental stress, or another animal may have killed them because they were vulnerable. We don’t think it’s because the baby animal or its family was more cursed than all the other animals.
Yet, still I spent a lot of time dissecting my life. How did I get to this point? And the police and DHS, entered into our lives too, asking questions, judging us because we had made choices in our life that were not mainstream but we didn’t quite fit into their neat little boxes either. We became an anomaly. I felt very isolated and alone. There was one doctor that were sure that the autopsy would find us culpable in the death of our son that he even dared to write this in my medical record. He made assumptions about us; he dared me to do laps around the cardiac floor while he timed me. He couldn’t understand that I could not be admitted before I buried my baby preferring to directly challenge me and say he couldn’t see how “a smart, articulate woman like myself, couldn’t see reason”. I hit a raw nerve with him and he didn’t understand that I was in grief. His job wasn’t to judge me but to give me the information I needed to decide on a treatment plan. The police’s job wasn’t to judge or interrogate us either but to collect information for the Coroner. But I understood that they were reacting to a deep seated human need to attribute blame, to find a reason for why a baby could die. The autopsy results came six months later and Jasher’s death and failure to thrive was a result of me being in heart failure during my pregnancy. It was very matter of fact. It didn’t convey all the pain, suffering and hardship that we faced after Jasher died.
I felt a terrible sense of shame burying Jasher. I felt that my body had let him down. I didn’t ever want to have to see my children cry, to bury their baby brother. We questioned everything and turned our lives upside down almost tearing them apart, trying to find answers. Things that I thought in the beginning that were responsible for me going into heart failure were totally incorrect. It wasn’t because I had too many children. It wasn’t because I was too old to have a baby. Women develop postpartum cardiomyopathy in their first pregnancy and even as young as 17. It takes a lot of searching, to find answers to questions but one thing I learnt, was to accept that I didn’t know, what I didn’t know and to forgive myself. My life was what it was. I couldn’t change to fit someone else’s box. I was doing the best for my family, in very difficult circumstances of having to move a business and house, over 100 kilometres away while pregnant but in the end, I don’t believe this solely contributed to developing heart failure. I was already headed down the slippery slope from very early on in my pregnancy, possibly years in the making through undiagnosed food intolerances, vitamin deficiencies and inflammation. I thought I was healthy but heart failure induced by pregnancy happened so fast. Our lives had been quite unbalanced prior; we were going through the motions of life, but we weren’t living.
I was fortunate though, to have people enter my life that didn’t judge me, who spoke to me with compassion and hope, and intervened in the situation. These people saved my life and reminded me of the power of love. This is what is so wonderful about my children. They don’t judge. They were sad to lose Jasher but they accepted the situation and helped. They didn’t think too much about the future or what would happen if I didn’t recover or reflect on the past, at what could have been done differently. They lived in the present moment and being around them, helped me to learn to enjoy the present moment, and be grateful for each day. To make daily changes to recover and in my quest to recover, I did so many things from infrared saunas, yoga, water fasting, juicing, changing diets, colonics, bike riding, walking, supplements. It was an amazing journey of discovery. I learnt so much about health. I had so many blood tests, ultrasounds and doctors’ appointments and we were so focussed on me getting well, it was only when I heard the news that I had fully recovered, that I broke down into an emotional mess because the first question my cardio asked me, was what I thought of having another baby?
It’s natural that death can taint everything, that even the good memories become tainted with sorrow. It’s natural that you see flaws in your life, your spouse, yourself, your children that become intensified in the pursuit, of trying to make sense of a bad situation. In the beginning, I couldn’t look at old photos without a sense that that moment, even years back was somehow part of a series of events that lead to Jasher’s life and death. I even found myself regretting the night he was conceived. I found myself, hating my life, my choices, myself but I remembered the words of the pathologist, to treasure the life and the time, that I had with Jasher and I repented of feeling that the pregnancy had harmed me and gave thanks for my pregnancy and the two weeks that I had with him. I also meditated on words spoken to me “Love your children, with the love you have always shown them”. Yes, I did love my children. I did love Jasher. I would never do anything to cause him harm. I wanted so much him to live. I didn’t want to get heart failure. I chose to love myself again and know that I was worthy to be loved, and I allowed love to fill my heart and see the love that was shining out back at me in those close to me.
When I was discharged from hospital, I could barely walk 200 metres. I certainly could not walk down to the beach from my house because I knew, I would never be able to climb up the elevated path. My 80 year old mother in law could walk down to the beach but I could not but my husband encouraged me to walk and each day, we walked a little bit further. In many ways, it was a metaphor for our life; walking is a day by day thing. You put one foot in front of another and one day, you climb the mountain that you never thought you would be able to climb.
In my heart I knew that a gift so beautiful as a baby could not be a curse and despite the diagnosis, I knew that I would recover. I heard the voice of God, say to me that I would be healed of all my sickness and all my disease. I knew that Jasher was given to us, to give us life. A new life. We made a lot of changes in the weeks and months that followed, as a direct result of Jasher’s life and though I am fully recovered now, and off all medication, we are better people, our love is stronger, our hearts more tender because Jasher lived. I am healthier now than I have been for years. Our business compliments our life, rather than taking over it. We developed a website to help other women who have postpartum cardiomyopathy and to raise awareness about the disease. It is www.myheartsisters.com . It helped us channel our energies into doing positive things for other people; to give life and hope to others, as life and hope were given to us. We rediscovered the infinite beauty of life, of treasuring the intangible things in life, of letting go of judgement, worry and fear and to be thankful for each day. You can have everything in life, and be miserable. It’s all about perspective. There is no perfect life. Life just is what it is and my life, is what it is. I can make the best of it or I could let death take the best of my life from me.
I also spent a lot of time in prayer at the beach and at some point; the weight was lifted from me. I let go of the past that I could not change, even if I wanted to. I let go of the what could have been and faced the reality, of what was before me. I made a choice to live, and to let Jasher go. His spirit is not in the ground. He is free. I know that when I grieve, and feel the sense of loss, I can feel Jasher close to me but I know he wants our family to continue living, not in the shadows of death but in the sunshine of life. His legacy for us is new life, to be people that are more connected, more giving, generous, kind, and open to change. I wish I could be the person I am today without suffering the loss that I have but that is not my reality but I also have been told by God, that there is nothing stolen that cannot be returned to me. Jasher will return to us. I know that, just as I know that I would be healed and while people may think of that as crazy or wishful thinking, I choose hope, faith and life over fear, guilt and sorrow. I choose compassion and understanding over judgement. I choose to look back on the past, both good and bad with fondness, instead of regret. I accept my life and love my family. I love Jasher with all my heart. He is with us always. Our lives were forever changed because he lived.
Jasher was the eleventh child in our family; he has five older brothers and five older sisters. Tonight I remember and honour him. Thank you for listening to my story. I have a more detailed version of my recovery and all that we learnt about healing on http://www.myheartsisters.com/stories/show/jasher-s-story .
Wishing you all peace.