#DiversityInLoss – lives should end at the end

There isn’t a day that goes by that I am not grateful for the process that was made 40 odd years ago through the creation of Sands, and the continuous progress made by those who walked this path before us to change how society and the health service supports bereaved parents. I too, also often look to the future and feel the pressure of imaging holding grief for another 10, 20, 30 odd years. I am beyond honoured, inspired and humbled to share Carolyn’s words – she shared with me the story of her son, William.

Please, welcome Carolyn and William to the Diversity in Loss series…

Lives should end at the end, not at the beginning.  I remember when a colleague and his wife had a stillborn daughter.  I offered my condolences, heartfelt condolences, but I didn’t understand.  I thought that since they had never gotten to “know” her, how could the loss mean that much.  I have looked back on that moment many times, incredulous that I could fail to understand that their daughter was loved and cherished.  She had a place in the family. She was her parents’ daughter, her brother’s sister. She was their heart. They had a whole wardrobe of baby clothes but no baby to wear them.  And yet, at that moment, I did not understand any of this.

What does it mean for your child to be stillborn?  It means that you never hear their cry, never see their eyes, never know what it is to feel your child’s warmth.  Children born at the same time grow up. You only know your child on the first day of his or her life, which is also their last   All the other ages, from toddler on, you never get to see.  

One morning, early in my 6th month, I woke up vomiting, swollen, and in intense pain. My obstetricians explained I was near to death from severe preeclampsia and without immediate delivery, I would be dead within hours, my son along with me. I was losing my baby, but, amazingly, my obstetrician and my midwife had all been bereaved of their firstborns.  The details of our losses were different, but going home with empty arms was the same. So my little 600 gram son died, never having taken a breath, but I wasn’t left to grieve alone. We all grieved together.

I was kept in hospital for a matter of weeks. Exactly how many I cannot say because I was ill and despairing. But when I did eventually get home I was bereft and broken. How my life could go on without William to share it with seemed impossible. It was then that my father discovered a local Sands group, and they were my salvation. My father went with me to the first meeting. I told my story of loss in gulps of grief and emotion. Every other parent knew my pain because they had lived it. Everyone had a baby shaped hole in their hearts, and one father had two after losing two of his triplet daughters. The comfort we gave each other was matched by a sense of the sorrow of life. 

I kept attending for over a year, coupled with visits to a very warm and understanding woman psychologist. We get past these things, we go on living, but that hole in our hearts is always there. And despite the pain, despite missing William every moment of every day, I wouldn’t want it any other way. 

What I have wanted for William was for his short life to, in some way, make the world kinder for other children because he was once in it. What I have seen you do is make the world kinder for parents bereft and grieving. Leo’s legacy has given me and many others a comfort we might never have felt. Our sons’ lives were far too short, but they mattered, and they matter profoundly.

He was born on June 29, 1987 so he would have been a grown man. Like with your loss of Leo, we miss it all. We would have lost the newborn anyway because they would have grown into a baby, a toddler, a small boy, a bigger boy, and on and on to an adult. With Eli you see the stages that Leo never got to live. Baby loss takes everything life is meant to be and turns it on its head. 

It has been one of the best things that could have possibly happened to have chosen to open a Twitter account to follow Baby Loss Awareness Week. This lead me to you and so many other mums. It was then, hearing about Leo, Rosa, Eibhlin, Joshua, Kyle and so many others from their mums and dads that it was a safe place, a welcoming place, for William to join the group. I am getting teary eyed now remembering how he has become a person, a person not just hidden away in my heart, but a member of a community, for the first time since those early days. My brother never fails to send a birthday card on his birthday and he is now the only person I know who can speak of him directly. You and Leo gave me the most incredible gift – my motherhood back and gave William a chance to be a member of a group of other children who we as their parents will love until our dying breaths.

For information on finding your local Sands group, visit here.