The role of community in dealing with loss

The little way of ruthie lemingIn his recent book, Rod Dreher shares the story of his sister Ruthie’s final time on earth battling  lung cancer and how it led him back to his small hometown in Louisiana. The book caused me to weep, and has a message worth sharing here.

Now, I don’t like to admit to crying. But a few nights ago, I got to the part in The Little Way of Ruthie Leming where she dies. It unlocked all the repressed grief I still carry from my own father’s death at 61 from a blood disorder. And, as when he died, I stifled the tears as I read because of the pain that came with them.

The same thing happened in the days after our daughter’s birth. I wrote previously about how dads will likely cry and how they will not like having to have cried. I wrote this from my own and fellow DADS’ (Dads Appreciating Down Syndrome) experience. As much as society has welcomed guys crying since the sensitive male icons of the 1970’s, it’s still something I find most guys do not like doing. But, my tears from reading the book were not solely out of grief, and therein lies the lesson to be shared.

Dreher writes of the outpouring of support his sister’s community showed her when she was diagnosed and during her struggle. When her final day comes, the support and love showed by her community is so moving that it, too, will bring tears to your eyes if you read the book. And, that’s what caused me also to weep as I recalled all the support that came to my family when my dad died and when my daughter was born.

Juxtaposing my father’s death and my daughter’s birth is somewhat off-putting. Unfortunately, it is a very real truth that is shared when you have a child with Down syndrome: you grieve the loss of the child you thought you were going to have. Later, you realize the wisdom that parents with Down syndrome just find out earlier than others that the kid they got wasn’t the one they expected. But, in the moment, right when that diagnosis hits you, you cry.

You cry because you had all these dreams for the child you were expecting that now you don’t know if they’ll be a possibility. You cry because before the diagnosis you barely worried about how the world would treat your child, but you know how the world can treat those with an intellectual disability.

In all of this grief, though, you will also be overwhelmed by the support you can have.

In our situation, our family, neighbors, church members, and friends sustained us in those immediate first 48 hours. Then, the Thursday after our daughter was born, we met the executive director and a parent volunteer with our local Down syndrome parent support organization. Not too long after that, we were enrolled in early intervention therapy and these wonderful people showed up at our house to help. And with each passing year, more and more of a community has been built to help our little girl and to sustain her mother and me. For those who attended the National Down Syndrome Congress’s annual conference last week, the images of everyone dancing is one of supportive community and an image that parents likely could not envision when they first received the diagnosis.

It is this network of love provided by a community that causes Dreher to return home after being away for twenty years. In my case, I had left for a decade and then returned home, spurred by the community I saw that came out to support us when my father passed away.

Dreher honestly deals with the sometimes stifling nature of a small town, and the pettiness of any network of people. The same is true in the Down syndrome community. Talk to any “veteran,” particularly over a beer, and you will hear of the egotistical, selfish actions that take place in our community–which is no different than any other community. I had it in my fraternity; it’s there at my work place; and, it’s been there in our church. That’s just the way it is for us humans.

But, fortunately, the light to the dark, the yin to the yang, is the love and the support that the same community provides when you need it.

For a wonderful story of love, and one that will make you reflect on your own community–whether in appreciation for what you have or realizing the need to develop one–pick up your own copy of The Little Way of Ruthie Leming: A Southern Girl, a Small Town, and the Secret of a Good Life.

Related links on this idea that you are not alone, here and here

What was your experience with community when your child was born? 


  1. Heather a trammell says:

    Initially I didn’t let the “community” into my life at the time of our prenatal dx. We told our parents and 2 close friends and that was it and they were great. I just felt like I needed to process our news internally first before I shared with the rest of the world. But after I felt more at ease, I was richly rewarded by a very supportive community of friends most of them without a connection to the world of DS except for our little baby.


  1. […] talked about how receiving a diagnosis of Down syndrome can be a gut-punch. One that hits you. But, there are other perspectives on a Down syndrome […]

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