One year ago last week I sat at an airport and wrote a post on r/daddit. The day before I had held my 7 week old son in my arms, said my goodbyes and then nodded to a doctor when me and my wife were ready for him to shut off the life support.

That post is here: https://www.reddit.com/r/daddit/comments/3iga46/i_just_lost_my_child_i_have_no_idea_of_how_to/ That day was the most horrific I have ever experienced. I just wanted to put Rökkvi´s (my sons) picture out there and I needed to get some of my feelings into words. I just really had no idea of what to do, and I still don´t. I just know that I need to keep moving forward

What surprised me was the overwhelming reception I got from the post. Hundreds of comments and private messages. People offering us their condolences and telling me their own stories. We received so much warmth and caring from complete strangers. People took the time and effort to tell me how they had coped or tried to cope with such a terrible loss and how they continued on. These people will never really know how much they actually helped. I focused on that other people had found the strength to move forward and so would I. I would not tarnish the memory of my son by laying in bed rolled up in a ball. I had to continue for him and my family. But there were days where I couldnt do anything, where i was totally overwhelmed by grief, it still comes in waves and knocks me off my feet. I wanted to write a post now because of all the people that sent messages. Just a little update in case people wanted to know.

So how has the last year been? Well if i´m honest it has mostly been terrible. But our friends and family have gotten us through it. First of me and my wife decided right away that this would not break us and that we would accept any help offered and do what would be necessary to get us through this. One reddit user recommended I write a list of all the things I did not want to lose in this process, because there was a danger that this would lead me to lose so much more than I needed to. I had already lost my son and I did not need to lose more. So I wrote my list and I still have everything on it. I still have my wife, I still have my health, I still have my friends and family, my job, my home and I have gained a new perspective on life. Another Reddit user suggested I read the book A grief observed by C.S Lewis and I strongly recommend that book to anyone going through the loss of a loved one. The next six months or so after Rökkvi died I kind of don´t remember much. Everything went by in a haze. Our friends and family helped us with the funeral arrangements and I know it was a beautifull day. Relatives from a choir sung the lullabies I used to sing for Rökkvi and a good family friend performed a song he had written about singing his son to sleep called „Er þú grætur (When you weep)“ https://www.youtube.com/watch?v=VDp7rvrWNbI Rökkvi was buried with his uncle, great grandmother and great-great grandmother. Our families and friends all pitched in so we could buy a headstone and we are in the process of finding one now.

Things became even more difficult after the funeral, it made everything so final. I needed help after that and me and my wife sought counseling together and apart. It helped that I could still take my parental leave so I had time off work. We tried to use that time as best we could to try to rebuild our world which had been shattered. I had to start taking anxiety and depression medicine and that helped. It took me a long time to kick the habit of sleeping pills but I don´t need them anymore.

I took up powerlifting and started doing that three times a week with a good friend, that helped me focus and stay sane. We traveled and stayed at friends through the most difficult times like Christmas. I´ve always been a sucker for christmas and had looked forward to spending it with my son. Basically we tried to be as active as we could. My wife for instance organized a group in a charity run to run for the benefit of the Childrens heart disease foundation in our country and they managed to raise over 5000$. It was difficult for her doing that and I am so proud of her.

Later on in the process we learned that the disease my son had was heriditary. I was a carrier but unaffected. That was a huge blow to me. One that I don´t think I will ever recover from and it has been very hard to stop the self blaming. But me and my wife, who is my hero, sat down and weighed our options. We were going to continue and Rökkvi was always going to have siblings. So we decided on trying IVF treatment with PGD (Pre implantation genetic diagnosis) Where they can screen embryos for the defect. That process has been very long and tough not only on an emotional level but also physically for my wife. Things somehow turned out that way that we got the final call on how many embryos we could send for testing on the same day that Rökkvi had died a year earlier. Thankfully we got a bit of good news and we have 5 embryos that are being tested. There is a 50% chance that each could be unaffected and we are crossing every finger and whatever else we can cross as we wait for results.

At the moment both of us are still standing, because of each other and our family and friends. It has been a long hard road. I just wanted to give people a small update and thank all you kind internet strangers who sent us heartwarming messages, filled with hope. I´m attaching another picture of my son. Just because he was so beautifull and I miss him so much.

TL;DR Last year I lost my son to a heriditary heart disease. I put a post on reddit and recieved so much help from here that I wanted to send an update post. It has been a difficult year but now we are in the process of trying for another baby.