It feels like I’ve got two lives, the one before getting married in September 2005 and one after. My first life included working and studying abroad and starting a career in the hotel business based 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 was introduced to the Greif Recovery Method for the first time, and I ended up buying the book. I’m sure I read it, but I didn’t 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 in my bookshelf.
In 2005 I got married and left Stockholm to join my Swedish husband in Zurich. As I had lived abroad before I didn’t think it was that dramatic, but this time it was for an unlimited time I moved away form 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 are responsible for this little human being, for life!
As we went for Ingrid’s 2-month check up 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 got the diagnosis, Spinal Muscle Atrophy type 1, a very rare genetic disease with a life expectancy of approximately eight months. Our hearts smashes to tiny little pieces and our lives would never be the same again. There is no way you can prepare yourself for a moment like that, to hear that your 3 month old baby has got a terminal illness and is going to die. I just wanted to scream and never stop screaming!
We had our first battle with SMA already 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 normal as possible in the comfort of our own home was such a big help for us. I’m 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 8 months old.
After we had 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 now had to arrange all the practical details like organizing the funeral, order a tombstone and arrange all documents to be able to fly back to Sweden with an urn. Having to deal with all of this while in a state of chock 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 support parent at the Children’s hospital as well as with the palliative home care team (Kinderspitex) here in Zürich. 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 being stuck in loss and grief for various reasons? How could I be there for fellow expats experiencing loss and grief? How could I assist people living far away form their natural support system of family, friends, native language and familiarity?
That’s when the Grief Recovery Handbook mysteriously nudged itself out of its dusty existence in 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 with my passion to help others getting unstuck from their unresolved grief, feel less alone and isolated and have someone listening to their story. I wake up every day feeling so blessed to be able to do this kind of work, and that Ingrid taught me so much about life, death and all the things in between.
With love, Karin