America Wasn't Ready for My Grief

February is the “Month of Love” where sweethearts and valentines are in abundance. This amorous time of the year holds some significant love moments in my family. It was six years ago in February that a version of Elvis sang “Love Me Tender” as I married the man of my dreams, and it was that same February from years ago I learned sometimes true love grows in the broken fragments of living hearts.

My true love came in the form of a little boy with a big smile and a warrior’s heart. This child of mine had me at “hello,” and if our love story was left up to me, I would have never let him go. Cancer rewrote my boy’s life story that stormy day in February, and upon the doctor’s official declaration of death, I was thrown into a part of a growing community called the bereaved.

I wasn’t ready to join any grieving communities, but I quickly learned that America wasn’t ready for me. Our country has a low tolerance for death and treats the passing of life as a subject of taboo. We have been hiding and putting death away for a long time in our country. Regardless of our efforts, death still comes a knocking.

It wasn’t always this way. Our culture’s earlier custom for handling our deceased loved ones would happen at home where families were exposed to death on a first-hand basis. Today, most Americans will die in a hospital where death holds a different stigma, one that can resemble failure. Our culture’s rejection of this life experience is best described by George Annas, known for his work in the field of medical ethics, who called our nation one “that cannot accept death as anything but defeat.”

Here is the problem with that “one-size” fits all death experience — those of us who have watched a loved one on the front line of a cancer battle field know soldiers don’t die in defeat. Battles with terminal diseases are lost in research labs where weapons of mass destruction called cures are created. My cancer warrior bravely faced his disease and he certainly did not die in defeat, but was a hero till the very end.

Another problem with avoiding the topic of death is the lack coping skills for the living. Those of us in the grieving community are forced to hear “comfort sayings” from people who rationalize what they cannot understand with careless words like, “Matthew is in a better place.” Authentic words hold truth and real truths apply to us all, not just the children we cannot save from cancer.

I also have been guilty of denying death. When my 16-year-old got his driver’s license, I was completely comfortable with him donating his organs for a hypothetical death situation. When Matthew was diagnosed with terminal cancer at a mere 2 months old and his situation held a high probability for a real death occurrence, I held off on allowing hospice and palliative care into our lives until all hope had failed because my son dying was never really part of the plan.

We are guilty of shunning death every chance we get and paid leave is just another example. Many working Americans will get zero paid time off to care for their sick and dying loved ones. There are only a few companies in our country that will respect this difficult time for a family, and they do it out of the kindness of their hearts, not because they have too. I can vouch that in my experience, bringing a new child into this world is easy-peasy compared to letting one leave it.

Ignoring death is helping no one, and America needs a space where useful conversations about death and grief can take place. We need real tools that do not require me “getting over it” or having to walk through the “five stages of grief,” which I found outdated and restrictive. I will never accept that children must die from cancer nor did I ever have the pleasure of the denying Matthew’s death. My forever empty arms refuse to live in denial and are heavy reminders of who I really am, a grief survivor.

See, the real common denominator in the grieving community is not just that we know death, but that we know a love so great we will never let it go. I want there to be opportunities for Matthew’s death to bring about real changes and fresh perspectives. Grief is the driving force in how I choose joy amongst the pain, because honoring Matthew’s life and his death can only happen when I treasure the very same life he died wanting more of.

Surviving grief has led me to work that feels good and does good, like the non-profit projects I work on at Jacob’s Heart Children’s Cancer Support Services and Key for a Key For A Cure Foundation. Some of that work is raising money for pediatric cancer research, but my work at Jacob’s Heart has become more focused on changing the platform for us grieving folks. Jacob’s Heart hosts a bereavement retreat called Forever Loved which in only its second year made advancements in this area. Jacob’s Heart is creating safe spaces for grieving families from a variety of religions and cultures to connect and heal. Defenseless families like mine are exposed to healing techniques like drumming therapies and breathing practices. We have access to psychologists, meditation and art therapy which for some people like me was the first time I was able to expose myself to these types of therapies without feeling weird. Jacob’s Heart Cancer Support Services has recognized that full-circle pediatric cancer support must include palliative and hospice care, but also bereavement services.

Grieving people need the freedom to feel, and it was at last year’s Forever Loved Retreat, amongst the redwoods, where a newly bereaved father felt safe to say his dead child’s name again. There, he was around people who understand how saying a name again can bring you to your knees. Forever Loved is a place where broken hearts can go to be inspired.

We don’t choose the grieving community, it chooses us. But we do have a choice in how we walk down this pathway of heartache and that is where the difference is made. As the infamous Carl Jung once said, “I am not what happened to me, I am what I choose to become.”