Tuesday, June 28, 2016


And just like that, I ended up on the other side. I ended up in the most not wanted group of moms, the mothers who have lost their children. In less than an hour after people knew Jacob had passed, I was suddenly a member of the Facebook group "Mito disorders child loss support group". It was well meant to add me, but it was a quick transition to the other side. In having friends on the other side, I always empathized and listened, but I never knew what it truly meant to loose a child. Being a little over a week in to this journey of grief and finding a new path in life, I am fully convinced that I have still only scratched the surface of what is ahead of me. As my dear friend Heather said: "don't underestimate the crappiness of this".

Planning a memorial service is a little like planning a wedding, the only difference is you have less time and there is no excitement in knocking on the door to a funeral home to plan your 10 years old child memorial service. When you just want to stay in your PJs under your cover, you need to make decisions around what music to play, who should speak at the service, what flower arrangements you would like, what casket your child should be cremated in, and what urn to pick. We were lucky to pick a funeral director who was organized and walked us through this process step by step, hour by hour. She did it with empathy and grace. In the middle of tears and exhaustion, it felt so important to honor Jacob's life in the best way possible. Joakim and I looked at thousands of pictures to pick out the small number of 40 pictures to represent Jacob's life. We spent hours creating photo boards and emailing back and forth with friends and family to make sure everyone's requests got honored. In the middle of the busyness, I knew there was a purpose to the crazy days. In order to function, the tears and the emptiness came in chunks rather than at all hours of the day. There was a purpose to get out of bed each day because there was a long list of things to accomplish in order to get a memorial service ready in five days.

We knew we also wanted to do a Celebration of Jacob's life. We had decided years ago we would like to do it at Jacob's preschool Bal Swan where he had five awesome years, probably the best five years of his life. One email to the Director, and it was a deal! That school was always more than a school, it's like its own community of families in Broomfield, all believing in full inclusion of special needs children.

As I was sitting down for a quick bite Monday morning, my dear friend Susan texted me. She didn't say: "please, let me know what you need" because reality is I had no idea what I needed. She simply said: "I would like to organize your reception for you. Somebody did that when my mom passed away, and it helped me a lot". As I entered Bal Swan to meet with the Director, Susan and Alyssa were sitting with their note pads and pens ready to get to work. Wow! There is no way, Joakim and I could have planned both the memorial service and Jacob's celebration in the short of amount of time we had. We're forever grateful to Susan, Alyssa and the whole Paul Derda recreation center crew for putting on the most amazing celebration for hundreds of people.

The day before Jacob's memorial service, we were all on edge. We all snapped at the smallest of things. We all dreaded the day of Jacob's memorial service, and at the same time, we wanted it to be perfect. A perfect way of honoring our boy.

Looking back, the memorial service and Jacob's celebration of life were so sad but so beautiful. The stories and memories throughout the whole day told a story about love, fight and quality of life. A short life that touched so many people. A boy who touched more people that most will do in a full life time. Our precious boy Jacob. An inspiration to so many.

We streamed the whole memorial service for friends and family in Europe. They were all so thankful to take part from a distance. We know many were not able to make it to the memorial service due to summer vacations. If you want to view his service, the streaming is now on YouTube. Please note it's close to 90 minutes:


Special thanks to speech therapist Brittany and nurse Gemma to speak at the service, and to Dr. E. for playing the violin with her husband Anthony.

Here are many beautiful photos from Jacob's memorials service from our photographer Mary Elizabeth Graff. You can download any of them, if you like:


And some more from Jacob's Celebration of life. Thank you Jeannene Evenstad for taking so many beautiful photos:

A dear friend and dad decided to decorate Bal Swan with balloons in Jacob's favorite colors red and blue. As the Celebration came to end, we decided to release the balloons to Jacob. What a perfect ending to the day:

We have been embraced with enormous kindness and love in the last ten days. We are forever grateful to our community of family and friends who stand by our side as we struggle to find a new normal. We invested everything we had in making Jacob's life the best life possible, we are now putting one foot forward at a time to figure out life without him here on earth. Our hearts are aching.

Much love and gratitude, Maria, Joakim & Sarah.


  1. It was so beautiful, and reading through this the tears fall from my eyes again. He touched so many lives. He brought so many people into your lives. His presence will be missed. Love to you all as you move forward. <3

    1. Thank you, Deana. He sure gave us all a very rich life by bringing in many beautiful people to all of our lives.