Grief, Loss & Growth in the Duchenne Family

The excerpt below is from our webinar “Supporting the Duchenne Family” with guest speaker Dr. Molly Colvin. Dr. Colvin is Director of Massachusetts General Hospital’s Learning and Emotional Assessment Program (LEAP) and Assistant Professor of Psychology at Harvard Medical School. Click here to listen to the full episode.

Grief, Loss & Growth in the Duchenne Family

I think, from a family perspective, what I often see is that there’s a huge sort of learning curve when the diagnosis is new. That learning is mostly concentrated on the stabilization of the medical condition that you’re preparing for and everything that kind of comes from that, like all of the therapies and the medicines and everything else.

Once that sort of settles out, then the issues around learning, emotions and cognition may actually be some of the issues that actually need more intensive and chronic attention to promote good quality of family life and functioning, but that’s for another time.

Grief & Loss

Diagnosis is its own sort of intense period and I think everybody is on their own trajectory about that.

For some people, it’s a short period and they can move through it fairly quickly. And I think for other people, it can be a very long period and it can also be one that you sort of move in and move out of. And I think everybody needs to know that’s OK. I think it’s normal at the beginning to sort of experience fear and shock and to also have it be somewhat traumatic for the family.

It really puts families on an immediate learning curve. So, in the midst of being potentially afraid and fearful and somewhat traumatized, you’re also then put on a really steep learning curve where you’re sort of expected to come up to speed on a lot of new things very quickly. So understandably, that’s overwhelming. It’s really hard to be on a steep learning curve when anxiety and worry and fear is chewing up all of your brain power.

So, it’s a really difficult time for families and it is really important that they have support. I would say it should be especially around the parents in the first place, but also, I think there needs to be some attention to mothers who – I think – have a different experience of Duchenne.

You know, we can’t say we fully understand the kind of grief that comes around a life altering diagnosis for a child… but more recently, people have been thinking about grief associated with raising a child who has a chronic illness and what that does on the family system. And we’re recognizing that there are different variables that impact how a family experiences grief – including things like what type of illness is it? What is the time frame of the illness?

I think grief is normal and it’s something that sort of comes and goes. It’s not a one-time thing that is usually just about diagnosis and then never crops up again. It sometimes crops up again and again.

I think I probably shared this with you, but it was actually shared with me from a family that I was working with, and it was a poem that was called “Welcome to Holland“. I just think it’s wonderful and sort of captures for so many families what that initial experience is like.

Family Growth

So, what I think comes out of the experience described in “Welcome to Holland” is a type of learning. Sometimes people think about the Yin and the Yang, and that can apply in this situation, too. So out of grief and loss also comes growth. You just sometimes have to let things go in order to grow.

One of the things that I think sometimes happens after you get through some of that grief, is a sort of a rebirth with a new identity and a new way of making meaning in the world that can be really beautiful.

  • It involves rearranging family priorities, like focusing more on the present than what happens in the future.
  • There may be new dreams that come up and are imagined and you make meaning in a different way.
  • I think it also really changes the way that you view parenting and your child.
  • It does also make for some complications because it may call into question some of your values and existential questions.
  • Also, when you have both an affected child and an unaffected child, how do you walk those lines?
  • …and what does the Duchenne diagnosis mean in the context of your broader family and your whole community?

That’s complicated territory to navigate, but I absolutely believe that out of this experience often comes really meaningful growth for everybody.