Many times we focus on what we have lost from the loss of our infant and we forget to celebrate the life that was. Last month I am happy to say that my family and I celebrated what would have been my brothers 21st birthday. I was 6 when my brother passed away, he was diagnosed with Meckel-Gruber Syndrome and his life was 7 days long.
Meckel Gruber Syndrome is a genetic disorder that affects multiple functional areas of the body. According to the US National Library of Medicine, “Meckel Gruber syndrome affects 1 in 13,250 to 1 in 140,000 people worldwide.” This very rare disorder was traumatizing for my family 21 years ago, but now today we celebrate the life that was. We celebrate that we have all been impacted by a small short life and he lives on through our actions and words.
Many people struggling with the death of an infant focus on the loss. It is important to recognize that loss, but it is also important to heal. If you are struggling, please participate in a healing activity to acknowledge your loss. There are many different celebrations and activities that can help you to heal, you must find something that will bring you peace and show off the joy that was life.
Forget-me-not activity: Unable to hold your child anymore the heartache of empty arms can be unbearable. Purchase a plant, or seeds and pray (or practice mindfulness) about your child as you garden. This gives you something to nurture as your body is healing, and something to physically hold while remembering your child.