April 23, 2019
written by Dawn, a mother to six children, two of which have Friedreichs Ataxia, a rare, genetic and progressive, neuromuscular disease.
hero: a person admired for achievements and noble qualities.Merriam-Webster
My kids asked me what it meant to be a hero. I explained to them, in my words what a hero is. It sounds very little like the definition presented by Merriam-Webster, which makes “achievements” and “noble qualities” inseparable as measures of heroism.
Heroes Among Us
I am surrounded by heroes. The heroes I refer to do not keep list of achievements. They do not have a trophy room or a book of accomplishments. Their success at the end of the day is found in the bed of a sleeping child who is not in pain. It lies, a child finally asleep in a mother’s arms after waking again, crying, shaking, asking if their sibling will die and what that means; begging to know why God would do this to a family. It is in the tears of a mother who simply made it through another day in a life she never imagined; a life that is a contrast of nightmare and beautiful dream.
Many have given up achievements altogether. They fight to remember who they were “before ____”. What makes them happy? What are their career goals? Fitness goals? Nutrition goals? These have taken a back seat to timely med administration; tube feeds; supervision of nursing staff; nights by the bed of a child in the hospital; comforting siblings who are often lost in the concerns of their brother or sister.
Heroes Show Bravery
Of course the first people my children think of when they think of heroes are military, police, firefighters and Justice League. I do not wish to diminish the service of anyone, but I am finding that there is an entire world of heroes that go unnoticed. These are the people in my life who show tremendous bravery every day simply by getting out of bed and facing fears many parents can’t bear to think about. They don’t see it as brave. If you ask them they will tell you there is no choice; they are simply doing what they must. But I see bravery.
I see my friend take her child home on hospice care and smile through her tears as she cares for her family. I see a hero. I see another friend raise the special needs children she adopted, knowing their health care needs; juggling military life; moving her family…I see bravery. I see moms with children suffering from diseases that are only known in 3 or 4 children IN THE WORLD…they are brave. They are noble.
You will see these people, but you won’t know you do. They have no uniform or badges. They are in the grocery store planning meals and shopping. They are at the school functions. They look just like anyone else. You will probably never see them cry. Their tears are saved for the quiet moments spent with God, pouring out their heart, presenting themselves vulnerable before the only one who can heal all hurts.
Heroes Show Up
Perhaps it’s not the definition purposed by Merriam-Webster that is problematic in my life. Rather, it is the perception of society as to what qualifies as an achievement. The mothers around me are heroes because they show up. They show up when they want to run. They fight back tears and parent when they want to hide. They plan end of life care; sign do not resuscitate paperwork; talk about funeral arrangements. Their achievements can be seen in the way their children feel loved, accepted, and whole within their family even as their heart feels wounded beyond repair. Their achievements are measured in the tears they cry.
These are the heroes in my life. I am in awe of them. I hope one day, my children will recognize that heroism can stand INDEPENDENT of achievement as measured by society. Heroism is found in the heart and soul of a mother of a child with life-threatening disease.