Every Wednesday

Every Wednesday I will post something about grief. Sometimes it will be a reflection on an aspect of grief’s landscape. Now and then I will share from my own journey of grief, because in the sharing of our stories we find strength and build a community of people that support one another.

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Sunday, October 16, 2016

Like the Stars






Book: Light Of One Star, Anne Fischer Juhlmann

Anne Juhlmann has published the journal she kept of her daily life taking care of her two sons, Zach and Sam, who developed Mitochondrial Disease when they were young and died within a few years of each other. It’s a story of strength, heartbreak and love, and it will make you laugh, cry and hurt.

Anne’s book joins other moving accounts of parents writing about the death of their children, particularly Emily Rapp’s (Black) account of her son Ronan’s death to Tay-Sachs at age two (Still Point of the Turning World), and Elea Acheson’s blog posts and writings in the Huffington Post about her son Vasu dying of kidney cancer at age six.

What moved me were Anne, Sam and Zach’s strength and determination when dealing with the frequent setbacks, like having a fun outing planned but having to cancel because of another medical situation. I was also touched by the love and support of Zach and Sam’s sisters, Brittany and Abigail.

Trained as a pediatric nurse, the conviction that helped Anne cope was that her sons were not dying from a disease, they were living with it. They were happy, and there is joy throughout the book as her sons play and discover their interests and passions in life.

There is no cure for Mitochondrial Disease. This has to be one of the worst nightmares for a parent — to watch your child struggle and succumb to something that doctors cannot cure and you cannot fix.

We see her sons’ personalities develop and get a sense of who they would be as adults had they lived.  They seem unusually perceptive and wise about reality. One day Zach said, for instance, when Anne was struggling to understand why this was happening:

“Life’s not fair Mama. Get used to it.”

There are few answers when children die, none that satisfy us, anyway. Throughout the book, Anne writes honestly about her struggles with fear, despair and joy. She discovers important insights and shares them with us: “Life is a succession of moments.” “Hope is a powerful medicine.”

When accepting the Nobel Prize in Literature, William Faulkner spoke of people being able to prevail in traumatic situations because the human spirit was “capable of compassion, sacrifice and endurance.” This is the story of a family who has done just that.

The story does not end with the deaths of Zach and Sam. Those who have lost someone close know this. For parents, they will go through the rest of their lives imagining what their children would have been doing now that they were 25 and 34 and 52. In the years after, Anne and her family have struggled with the finality and the empty spaces in their lives. Anne has spoken at conferences to raise awareness and funds for families who are dealing with terminal childhood illnesses.

What we are left with, and where Anne closes her book, are the stars. She has long watched the stars and found comfort in them. She says that the lives of people we love shine bright like the stars. After they die, we can still see them, but no longer touch. On some days this isn’t enough.

8 comments:

  1. Thanks, Mark. As a bereaved parent and memoir writer, I am very interested in this. And yes, the story never ends with the death of your loved one. Because that must be the beginning. Must be.

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  2. Agreed. Our love for those who have died does not end. But we are changed forever.

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  3. A beautiful sad and compassionate story that I look forward to reading. The death of a child or a loved one never ends there. The memories return every day as we relive them over and over again.

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    1. The memories do not end, nor the love for our children.

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  4. Thank you for the recommendation. Just reading your post about the book has me filled with emotion. I am sure the book would be a huge challenge for me to read yet at the same time I think that, as a mom of 5 who always worries about what would happen to me if I lost one of my kids, it would be good for me to read it.

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    1. What moved me about the book was the mother's strength to do what needed to be done, and the joy of her boys in living each day, not knowing what the future would bring.

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  5. Hi Mark, I thought I posted my thanks to you earlier but perhaps I am mistaken. I want to say thank you for both reading my book and dedicating your blog post to it. My older son told me once that he so missed being referred to as "Sam's big brother ." He was so thankful and delighted about a year after Sam left that he was introduced as such at a children's memorial service . I, too, feel this and so to read your blog made me smile and remember in a profound way that yes, I am still the boys' mother, just as much as I am a mother to my daughters. I have been reading your blog for about a month going forward, and when time going backwards. I am so deeply touched and impacted by what you write. Though our loss is different, I find myself nodding and crying and saying yes when I read what you write. And I need to do all of those things. I am glad our mutual friend Laurie "introduced" us by telling you of my book. Thank you again for the time you took to read and review it.

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    1. Although our losses are different, Anne, I think that because we have suffered the loss of people we dearly loved, we understand each other in ways that those who have not grieved do not. I am grateful that you find my words helpful. I am also grateful to you for writing your book, and writing honestly and openly. It is filled with so many moments of life and heart and hope. It deserves to be read by many.

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