Losing a Child: Grief and Recovery

It feels like I have got two lives: the one before getting married in September 2005 and the one after. My first life included working and studying abroad and starting a career in the hotel business in Stockholm, Sweden. My first major loss took place in September 2001, when my father passed away after a long battle with cancer. I felt so lost and disoriented without him, and it took me more than two years to get back to a reasonable state of health again. That is when I encountered the Grief Recovery Method for the first time, and I ended up buying The Grief Recovery Handbook. I am sure I read it at that time, but I did not have the energy to work though the method on my own. Nor did I have the courage to find myself a partner to work with, so the book ended up on my bookshelf.

In 2005 I got married and left Stockholm to join my Swedish husband in Zurich. As I had lived abroad before, I did not find it so dramatic at first, but the difference this time would be the unknown length of time that I would live away from my friends and family.

Our first daughter, Ingrid, was born in September 2006, one day after our first wedding anniversary, and we fell in love with her immediately. All of a sudden we were responsible for this little human being, for life!

When we went for Ingrid’s two-month checkup, the doctor was concerned about her lack of leg movement, so she sent us off to the Children’s Hospital here in Zurich for further tests. On the 16th of December 2006 we received a diagnosis of Spinal Muscle Atrophy type 1, a very rare genetic disease with a life expectancy of approximately eight months. Our hearts smashed to tiny little pieces and our lives were never the same again. There is no way you can prepare yourself for a moment like that, hearing that your three-month-old baby has a terminal illness and is going to die. I just wanted to scream and never stop!

We already had our first battle with SMA two weeks after getting the diagnosis, when Ingrid caught a bad cold and one of her lungs collapsed. She fought death off that time, as she would on several occasions after that.

We had the most amazing care team from Kinderspitex in Zurich, which gave us the chance to care for Ingrid at home. To be able to live life as normally as possible in the comfort of our own home was such a big help to us. I am convinced that it prolonged Ingrid’s life and definitely ensured the optimal quality of life as a family. Ingrid passed away peacefully at home in May of 2007, almost eight months old.

After we lost Ingrid, it dawned on me how little help there was for us as parents. We had received excellent medical care for our child, but after she was gone and all the medical equipment had been collected, we were pretty much left to fend for ourselves. We had to tend to all the practical details like organizing the funeral, ordering a tombstone, and arranging all the proper documents that would allow us to fly back to Sweden with an urn. Having to deal with all of this while in a state of shock and grief was daunting, and I have never felt so alone, isolated and lost in my whole life. There was no real list of support options presented to us, so on top of everything else I had to muster the energy to look for help myself.

Immediately after Ingrid’s passing I signed myself up as a support parent at the Children’s Hospital as well as with the palliative home care team (Kinderspitex) here in Zurich. At least I would be able to give other parents with SMA babies a chance to contact a fellow parent. But what about all the other people stuck in loss and grief for various reasons? How could I be there for fellow expats experiencing these heavy feelings? How could I assist people living far away from their natural support systems of family, friends, native language and familiar things?

That is when The Grief Recovery Handbook mysteriously nudged itself out of its dusty existence on my bookshelf. I decided to do the certification to become a Grief Recovery Specialist to be able to offer this support, not only to fellow SMA parents, but also to other people experiencing loss.

Today I work passionately to help others get unstuck from their unresolved grief, help them feel less alone and isolated, and to give them someone to listen to their stories. I wake up every day feeling so blessed to be able to do this kind of work, and grateful that Ingrid taught me so much about life, death and all the things in between. As my coach Edson Williams once put it in a workshop, “Karin flipped the script from being a bereaved parent to using the loss as an inspiration to help others.” That really warmed my heart.

By Karin Andersson Hagelin                  

Karin is now a certified Grief Recovery Specialist based in Zurich, Switzerland. Hagelin Grief Recovery offers the Grief Recovery Method Outreach Program, with the 12-week group format in English or Swedish and the eight-week one-on-one format in Swedish, English or German.

Illustration by Ivy Hieber-Kwok

Ivy has been illustrating for Mothering Matters since the ‘olden days’ when it was solely a print journal.