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“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!

How we dealt with the terminal diagnosis of our baby daughter

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This post is mostly for you that might be in the same situation that we were in 5 years ago. I just want to say, although you honestly don’t think you are going to survive – I mean, how can you when your child dies – you do survive! Somehow you do.

We decided on creating this “fairy tale” about Ingrid being a very old soul that only needed a huge boost of unconditional love to rise to the next level, and that we had to respect Ingrid’s life journey. She had chosen us as her parents because she counted on the support and unconditional love she needed to survive as long as she could. The diagnosis was what it was and we couldn’t change that, so we might as well do the very very best we could, and I’m SURE that every parent would. For us it was pointless to start asking “Why us?”, “Why her?” etc. You are never ever going to get a satisfying answer.

The hardest part was that we felt so alone, abroad without our relatives and close friends close by for support (however, a lot of new, beautiful people stepped up and helped us!!). That we just got sent home after getting the diagnosis, without a follow up plan or support system in place made me feel so lost and helpless.

We found ourselves standing outside on the pavement outside the hospital in a dark, wintery Zürich, not knowing if what just had happened was was real or not. It all felt so surreal. I just wish that there had been someone there to offer us a big hug or hold our hand for comfort, but there was no such person. So after Ingrid had passed away, I swore that no one should have to feel that lost and lonely so I volunteered as support family both with Kinderspital Zürich and Kinderspitex (home care unit for palliative care at home) in case anyone else would get the same diagnosis and asking for support. I received a phone call from Kinderspitex last week again, and although it brings back very raw memories, there is no way I’m going to step away from that responsibility.

So here is my offer: if you have just gotten the same, shitty diagnosis SMA type 1, and you are “Googling” (as we did) after what on earth just smashed your life in to tiny tiny pieces, PLEASE contact me! I’m here, I can listen, I can take it!

Lots of love, Karin

The post I’ve been scared of writing

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I just watched one of the latest videos by my friend Niall at Disrupting the Rabblement (go check his site out, it rocks!!) where he is calling bullshit on on your invulnerable self. It’s basically writing/telling about the stuff that you are scared of writing about, that makes you vulnerable and that means opening up with the true story even if it makes you feel insecure.

So here is one of the posts that I’ve been holding back with and that I now feel the need to write. Firstly because it might just help someone in some weird and wonderful way and secondly to put things in perspective for myself. Because what I do now is also scary. It’s scary to decide not to go back to the corporate world, it’s scary to start something new and see what the reactions from others will be, if any at all. But as you shall see, there is “scary” and “scary”. First I thought about doing this as a video, but it’s now after midnight and the whole family is sleeping! There will be other opportunities to talk about this in videos later on, I’m sure.

It’s about the scariest thing that has happened to me to date. The date was the 15th of December 2006 and we had been called back to the Children’s Hospital here in Zürich to get the results from the tests made on our first born daughter Ingrid, three months old. I can recall that I had even dressed more “hip” than normal as a protection I guess, because bad things don’t happen to “hip” people, right?

We were called in to see two doctors and one of them started telling us that Ingrid had been diagnosed with Spinal Muscular Atrophy type 1, a genetic disease. She went on to tell us that those children rarely live much longer than 8 months. By this time I’m sitting with Ingrid in my arms, rocking her and myself, whispering to all three of us “this is not happening, it’s not true” like a mantra, over and over and over again. They then gave us a list with phone numbers in case we wanted to get help in any way and then we were sent back home with our terminally ill baby girl.

This story changed our lives, and it has given me the strength to go out and find my life purpose. There are no coincidences in the Universe and I believe that Ingrid came to show me that I can do more with my life than hang around in a 9-5 job. What I do now, I do thanks to her and thanks to her sister and brother. I need to pull more strength from that story in order to help and inspire others, and telling it like it is is necessary in order to do that. I just can’t let what we went through, and survived, go to waste behind a desk in an investment bank.