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My own story about deep grief and profound healing.

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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.

IMG_5696My 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!

ängel Ingrid och mammaWe 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.

-214Today 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

 

The loss of hopes and dreams

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Swiss MountainsOn the 14th of May 2007 I did not only loose my child, I also lost all the hopes and dreams that I had painted up in my mind while she was growing in my belly.

To finally be a little family. To see her develop and grow. To experience her first tooth, her first birthday, her first steps, her first words, her first day of school, our family holidays. To see her experience and learn about the world. To see what her path would be in life and to be there to cheer her on, comfort her, encourage her and see her grow up to be an adult. To love her unconditionally.

All of that was also lost, and all of that I finally had the opportunity to express as I wrote her a letter. It made all the difference, so there is hope, people! You CAN survive, and you can even be happy again. I’m the perfect example.

“Our little angel is going to leave us”

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This is a blog post I wrote on the Swedish Forum  Familjeliv.se on January 26, 2007:

Ingrid Eva Linnéa“On 18 September 2006 our little angle was born. She was perfect and we were so happy to have got such a pretty girl. At the 2-month check up the paediatrician discovered that she had wasn’t moving the way she should be, and we were referred to Children’s Hospital for further check-ups. On the 15th of December we were given the nightmare diagnosis that our little girl had spinal muscular atrophy type 1, and that most of these children die before the age of 1 year. So now we are sitting here waiting for the inevitable, that her muscles will become weaker and weaker. That she will no longer be able to eat by herself, and finally not being able to breathe any longer. HOW on Earth will I be able to handle this?? Is there someone who has something helpful to say? We are trying to be brave for her sake, but our hearts are right now breaking from all the grief. ”

If you know someone in a similar situation, please send them my link. It’s not about me, it’s about all those desperate parents that I might be able to offer a glimmer of hope. THANKS!