Wednesday, September 2, 2015

Fellow Grievers, be that advocate!

When an appendage is removed from a person, a lot of adjusting has to take place.  After the surgery and sutures heal, sometimes physical therapy is needed.  The patient has to learn to adapt without a finger or arm or leg.  Eventually, a new lifestyle is mastered.

As parents with children removed from us through death, we have to learn a new lifestyle, too. We adapt.  We adjust. We cope.  But some days we cry and wonder why the world seems to want to shut us out.

There is no way that a parent who has not lost a child to death will ever understand the pain, the agony of absence, and the multitude of emotions that are attached to living without a son or daughter. It's just impossible.  I've never lost a limb (in the real physical sense) and I would never pretend to understand my friend Stella, who lost both legs when she was hit by a car.

Yet other parents feel the need to act like they get our pain.  They sit with their healthy children surrounding them and tell us not to be so sad.  "It'll get better."  "You'll be okay."   "He's in a better place."

You want to fight back and tell these parents that they don't get it.  But instead of trying to get them to understand your grief, there are more dynamic ways you can choose to spend your time.  Educate.  Be an adcocate.  Teach others in a way that they might be able to comprehend.  Share with them how they can help you to make the world a better place.

Did your child die from an overdose?  What leads to a life where one might die in this manner? What misconceptions do people have about teens and drug usage? Become an advocate for better awareness in this arena.

My son Daniel died from cancer treatments at age four.  September is National Childhood Cancer Awareness Month, a month when I reach out via social media to let others know that kids can get malignant tumors.  Kids can be born with cancer from no fault of their own or from their parents'. And yes, little children do die from cancer.  Parents are empathetic in helping me get the word out because they realize that cancer shows no mercy to age, color of skin, or socio-economic ranks.  If they are realistic, they know that any child can get cancer, just as any child is capable of dying from any disease or sudden accident.

I''ve written articles for magazines and newspapers about what striving for a cure means to me as a mom whose three-year-old was diagnosed with neuroblastoma, and what it means to thousands of parents across the country. I wear the gold ribbon as a visual to show my desire to fight for better clinical trials and for a cure for childhood cancer. And I think of  my sweet bald-headed Daniel who called himself a Brave Cookie.

Find your place of passion and let others know about it.   Use your energy, be fueled by it, even if it stems initially from angst at others' ignorance.  Be that advocate in your child's memory! Let your lifestyle be one that encompasses the need for change.

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