about the author:
Joeanne Smith is a manifesting carrier of Duchenne Muscular Dystrophy. Joeanne has 2 children. Her son, Zak, died from Duchenne at the age of 16.
7 Ways to Help Our Bereaved Families
Our Duchenne community as a whole is no stranger to death. We see it and talk about it and think about it nearly every day. Some may even say that we grow to be fairly comfortable with the topic.
But extended family and friends often have a completely different experience with grief. In fact, many extended family and friends don’t know what to say or what to do, and they don’t want to make mistakes or more trouble, especially at such an emotional time.
However, at some point in our journey, life asks our extended family and friends – who may not be comfortable with death – to be a support system for the grieving family. It’s a huge learning curve that demands skills that many of us don’t have.
Despite this predicament, our bereaved families need help, and they need support for years… because the grieving never stops.
- Be there to listen, to care, to be a safe place where they can express our grief without being judged.
- Organize one friend of the family to take on the role of answering questions and taking phone calls. When we grieve the death of our child, we are normally unable to deal with the small things like answering viewing times, funeral dates and times, etc.
- Organize a food roster. After my son Zak passed, I was so grateful for that support. It also ensures that someone drops in to see what else may need doing or just to be a friendly face who will stay and listen.
- Organize someone to do the “chores” that still need to be done. Mowing the lawn, walking the family dog, cleaning or washing, and other things that can pile up.
- Don’t forget the siblings. They are also grieving, but children cope best with normality. Organize to take them to the park or on a play date. That will also give the parents a little breathing space to be together (and to talk about adult things without having to worry whether little ears are listening).
- Allow the family time to grieve as there is no right or wrong way to grieve. Never compare the death of Uncle Joe who passed at 86 with the death of a child (That in particular infuriated me as Uncle Joe wasn’t 16. He had had a long life).
- Always say their child’s name. There is nothing worse than feeling that your child has been forgotten.