Parenting a child with a disability and the five stages of grief

By Lani Knutson

I’ve  been thinking a lot about grief lately.

Don’t worry. I’m not trying to be morbid. Nor am I depressed (valid question though).

Some days I feel that grief is all around me. People lose people they love. They lose their job, receive a devastating diagnosis, a relationship breaks down . . . Sometimes I am overwhelmed by the grief I see around me. Yet it has also become a familiar friend.

While my grief then was completely different than the grief I feel today (related to my mother-in-law’s cancer diagnosis), I felt a loss each time we received a diagnosis for our boys. I was sad because little by little we lost a bit of the life I imagined we would have with our children. My husband, Tim and I love to hike, camp, and be outside in the remote wilderness. We still do these activities but they are challenging and sometimes the challenges are insurmountable. We just can’t delve into outdoor activities like we imagined. At a more basic level, I did not imagine a life of endless doctors’ appointments and medical bills when I became a parent.

I have moved through the five stages of grief repeatedly since my son, Peter was born. Most experts concur that people don’t walk through the stages of grief in a nice neat fashion. My experience agrees. My path has zig zagged, moved forward and backward, moved side to side, and often been on auto repeat. As I write this, I’m not sure if I should write in the past tense or the present because each stage is both past and present.

Denial: Even though I knew something was wrong with Peter when he was a baby, I found it easier to convince myself that it was nothing or that it was an issue that would be resolved quickly. Or I would think, “When we are finally done with physical therapy and other doctor appointments, then we will have more money to spend on the house, or going out to eat, or a new car.” I couldn’t fathom that this problem would be long term.

Anger: My anger was usually based around the difficulty that muscular dystrophy brought to our lives. Everything seemed harder and it wasn’t fair, god dammit. Can’t we just have an easy day/month/year for once! More anger came when others didn’t want to help us or, it seemed, deliberately tried to make our life harder.

Bargaining: I didn’t spend too much time on this stage, but I do remember wanting desperately for my boys to be “normal”. I would have done anything to make that happen.

Depression: This stage is especially hard for me to get out of or to avoid. I suffer from depression anyway and then you add the stress of raising sons with a life threatening disease. I was pushed over the edge many times and for long periods of time. Depression is where I often return on the days that are hard. Once here the best I can do is draw on my coping strategies until I find my way out.

Acceptance: This stage is the hardest to achieve I think. Many times I thought I was in a place of acceptance only find that I was pretty good at faking it. Eventually (over many years and endless hours of therapy) I was able to truly say, “This is our life. I don’t know why we are on this path, but I am going to be open to what it will bring.” I can’t tell you precisely how I got to this stage but it took a long time, and I had to spend a lot of time in the other stages before I could get here.

Grief is hard and uncomfortable, but I am grateful that I can name it when I feel it. Letting the grief come and walk me through the stages or the journey or whatever you want to call it helps me work through my thoughts and feelings. I have a place where it is OK to be sad and where most people won’t judge me.

Today I am (mostly) in the stage of acceptance for the life we have with our boys and their disease. I am definitely NOT in the stage of acceptance for the imminent death of my mother-in-law. We’re all working through that one, and I think it will take awhile.

If you are working through grief for any reason, I’d be happy to sit in that space with you. I’m already there anyway.

Lani is mum to two wonderful sons have a rare form of Congenital Muscular Dystrophy (CMD) called SEPN1/SELENON related myopathy. Through her blog she offers a glimpse into their family life as they raise their energetic boys who have more challenges than your average kid. You can follow their journey at – Our SEPN1 Life.

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