Hey everyone, my name is Paul Sawka. I am the Awareness Leader for CDSS. I have been thinking and writing a lot about feelings and changes lately. I really wanted to share these thoughts with the world, so I would like to invite you to read my new blog series about my own emotions and changes as I get older.
Changes: Exploring Emotions and Aging
- Part 1: Dealing with Grief
- Part 2: Sibling Relationships (Coming Soon)
- Part 3: Selling the Family Home (Coming Soon)
- Part 4: Independence and Self-Advocacy (Coming Soon)
- Part 5: Holiday Memories (Coming Soon)
*TRIGGER WARNING* This article deals with grief and the loss of a loved one.
Dealing with Grief
Even though it was many years ago now, I have been dealing with the grief of losing my grandparents. I grew up having my grandparents with me and it is so very sad for me to lose them. It is so painful that I have also felt very angry about having them pass away. I do not like to feel angry about it but it is hard sometimes because it is not what I wanted to have happen to me. I want to share with everyone some of my personal feelings about my experience with grief.
Grief has been really difficult for me at times. It can really pull me down and it brings all kinds of other feelings like loneliness and sadness and even anger. It can be so very painful that I feel like I just can’t take it.
I’m not always sure what to do to help with these feelings. I do want to talk to someone about my grief because I feel like talking about it with someone helps me. When I have grief, I sometimes talk to my parents about the loss of my grandparents. We all miss them and we sometimes cry because we feel it in our hearts. When we lose someone that we love we really don’t know what happens to them and for me, that is hard.
We as a family have had to deal with it together by being there for each other, loving each other so much, and crying when we need to cry.
No shows or movies or books helped me to get over my grief because grief is something that I feel like I just can’t control or change and that is what makes it so hard.
Losing my grandparents has also made me feel like I really don’t want to grow that old or pass away like them.
How I deal with grief is by knowing the truth about them and by knowing that they have moved on. I may not like it but I am strong and will carry on growing in my own life. I will always have the memory of having had a wonderful grandma and grandpa. They loved me during their time of being with me and I will always remember that.
I spoke with my counsellor recently to see if she had any advice for me about dealing with grief. Some of the things she suggested were:
- Name our sadness or anger when it comes up.
- Seek comfort from those we trust.
- Notice it and the feeling in our body and ride the sensations through to the end. (This is like when you let yourself have a good cry.)
It is like a wave and then it is over. Feelings come and go, including grief. We have to find ways to live well and honour the loved ones that we’ve lost by loving others, building new relationships, and having a purpose in our lives.
Advice for Others Who Have Lost a Loved One
I do have many songs that I like to listen to when I am very sad when people and things had to leave me. One song is about when you’re gone and it is from Full House. It really tells the world that you have gone for many reasons. If I was mad or angry or full of rage because of something unfair or because of not very nice people, that song is called It’s just not fair.
I do watch movies and TV shows to really cheer me right up because I like it. They are Fuller House, Full House, all kinds of Disney movies, and even When Calls the Heart.
I always tell myself to calm down and to slow down when I get angry. Sometimes I get so very frustrated, I really show my anger and I might blow my top or need to yell. Give yourself a chance to feel your feelings, don’t hide them.
Recommended Resources for Dealing with Grief
- Talking About Death: A Parent’s Guide
- Coming to Terms, Down Syndrome and Grief, 3.21 Magazine
- What is Death?, Adult Down Syndrome Center
- Let’s talk about death: A booklet about death and funerals for people with Down syndrome, Down’s Syndrome Scotland
- Easy to Read Grief and Loss Booklet
- Bereavement: Health Series, Down’s Syndrome Association
- How to Talk to Kids About Death and Loss, Jason Hilkey
- How to Help When Your Loved One is Grieving, Mass General for Children
Mental Health Support
Looking for support? Visit our Mental Health Resource Hub for information and recommended programs for people with Down syndrome and the general public.
Healthy Aging for People with Down Syndrome
Navigate the next stage of life with useful information, resources and community stories. This resource helps people with Down syndrome and the people who care for them learn about the aging process and how to prepare for the future. Download the booklet from our Healthy Aging Resources Page.
