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Guest Post: Dealing With the Loss of a Medically Complex Child

ellashalo_logo2Ella’s Halo was created in memory of Ella Jo, who was born premature and lived in the NICU at a Minneapolis hospital for 83 days, before she passed away. Her parents, Ryan and Taryn Krumwiede, saw a need to make the hospital unit more like home during their stay with their daughter.

Ella’s Halo is a non-profit organization created to provide some of the comforts of home to babies and families during extended stays in Twin Cities NICUs. It provides blankets for hospital beds, books and music for babies, and more. But we provide comfort for families, as well: toys, books and movies for brothers and sisters, comfortable chairs for parents, and any other items the unit feels necessary. These are often small things, but they can make a hospital stay so much more comfortable for everyone. You can read more and follow their blog on the Ella’s Halo website

Looking Back on Loss

In 2009 we lost our sweet little Ella Jo. She was born prematurely at only 24 weeks and lived in the neonatal intensive care unit for 3 months before she passed away. She would have been 5 years old this past March. Looking back, it amazes me at how grief has been so intertwined with our lives, yet at the same time, has helped us to grow and change.
I was recently looking back at one of the very first posts I wrote on our Ella’s Halo Blog. It was only a few months after our daughter had passed way and it was titled “Milestones”. Reading it now, I still think it holds very true to how I feel and what grief has meant to me and my husband.

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“Our grief has also come in milestones. At first we were numb…the first day, week, month. We were both so numb to what happened and how our lives drastically changed. After the numbness wore off we were angry and asking why God did this, why he took our little baby. Now I am trying to understand what grief really means to me, to us. We have lost loved ones in the past but this grief was new…more painful. I now believe grief as emptiness and fullness within my heart. One moment grief can bring on an unbelievable emptiness. An emptiness from missing our sweet little baby every breath that I take, from feeling let down by life for not being able to watch our little princess grow up, and from the pain I now carry everywhere I go. But at the same time I have fullness within my soul. A fullness knowing that my little baby is at peace in the most beautiful place, knowing that we were blessed to have been chosen to be this little angel’s parents, and knowing that we will see her again and that this is not the end. I know we will forever have grief buried deep within our hearts but at least we are coming to understand what it means for us.”

—-Ella’s Halo Blog, August 25, 2009

Healing through Helping

5535_106910672890_1029720_nNow, 5 years later, it is a little easier to look back on how tender and raw that grief was. Yes, grief is still part of us, and there will be always a hole in our hearts of someone who is missing. But the emptiness that I once felt is maybe not as intense as it was back then. I remember sitting and thinking about the grief I was feeling and the emptiness I was holding on to on what would have been her very first birthday and thought to myself, I need to find something to help ease this pain, something that will help me move on, but not forget, and something that will allow me to find the light at the other end of this long and lonely journey.

For me, it was getting myself involved and helping other families like ours who had spent an extended stay in the NICU. My husband and I decided we want to help others by providing comfort to them during their long NICU stays with their babies.

The energy I was using for the grief I was experiencing began to be turned into motivation and energy to making it easier for others and by forming a nonprofit our daughter would be proud of. Starting our nonprofit became a huge milestone in my life and helped me find even more fullness in my heart. It was the turning point that I finally accepted my grief.

Finding the Milestones

Moving forward has not always been easy. There are times, milestones, and days when you are consumed with your grief and missing your child. Finding what would help pull us out of the darkness that grief was surrounding us with did not happen overnight. Moving forward is just one of the milestones in grief.

I learned to be patient with myself, that it was okay to feel what I was feeling whether it be sad from missing Ella, but at the same time happy to have had the experience. Heartbreaking to hear another person’s scary NICU experience but blessed to be able to provide them with some hope. Emptiness and fullness all at the same time just part of this thing we call grief and moving forward. Being okay with creating my own milestones along the way and finding out it was okay to find a source of happiness again. Moving forward from June 16, 2009, is just one of the many milestones in our long journey.

Originally published: July 1, 2014