CPN | From the Desk of a Genetic Counselor: Reflections on Mother’s Day
5/11/2017
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From the Desk of a Genetic Counselor: Reflections on Mother’s Day

BY MARY FRANCES GARBER, MS, CGC

Mother’s Day is approaching once again.  This is the day on the calendar to honor mothers, all mothers.  This day can be filled of mixed emotions for mothers who have children with life limiting conditions or for those mothers who have lost children.  The “joy” of being a mother may feel compromised and this can make a mother feel conflicted, even guilty for feeling this way.

For mothers who have children with serious conditions, motherhood is a test of endurance, a marathon that doesn’t end.  These mothers fully devote themselves to caring for their children, in a way that others cannot understand.  These mothers are “dragon mothers”, or warriors, they are advocates, fundraisers, educators, but primarily loving mothers.

Sometimes I think mothers who have loved and lost a child to a life limiting condition should wear a badge stating SURVIVOR.  I view their motherhood as unique.  It was an unexpected challenging journey that they were taken on and they survived.  These are the mothers who we should honor on mother’s day.  For them motherhood has not been easy.

I have several good friends who have lost their children and I have intimately witnessed their journey of motherhood and I view them as survivors.  They unconditionally loved, cared for and then lost their child.  They are the survivor in this love relationship, they are the ones still here only surrounded by photos, memories, stories. These mothers learned to appreciate and savor the smaller things in life.  Recognition in their child’s eyes, a squeeze of their hand, a laugh that only they can understand, or just holding their child.

On Mother’s Day, mothers are put on pedestals, taken to brunch, presented with flowers, given handmade cards, etc.  For mothers who have loved and lost it is a bittersweet day, a day when they pause and may be filled with sadness.  Some of my patients have been pregnant multiple times, but do not have any living children; either they endured pregnancy losses or lost their children to various conditions.  For them, their pain is very real and this day is very difficult, it is filled with emptiness.

For other patients, there is a hole in their family unit.  They have living children, but have lost one, or more than one to a condition.  These mothers struggle with the question, “How many children do you have?”   I rehearse the reply with some mothers, “I have two living children; we lost our son two years ago.”  Other mothers want to reply in a way that opens the conversation, telling in more detail about the loss of their son, stating his name, what the condition was that took his life prematurely.

I have come to believe from my work as a genetic counselor that there is not really anything one can say to a bereaved mother on Mother’s Day to comfort her from her sense of loss.  What one can do is to allow women to talk, to tell their stories, either about their days of pregnancy, when they were hopeful mothers, or about their children, their smiles, their hands, their laughs, before they fell silent.  Let mothers cry with you, smile with you.  Saying, “I know this is a hard day for you”, acknowledging that, and then listening to what that woman shares, with you, that is helpful.

Soon it will be Mother’s Day… from that initial positive pregnancy test, we begin our journey into motherhood, an unpredictable journey….for most a wonderful journey, but for some it can be challenging, long and even complicated by grief. Whether you physically hold your children, or hold them silently in your hearts, you are mothers…

I send comforting thoughts to all you mothers and hope you feel a sense of peace, support and love today.