It can be truthfully said that all days are tough right now, but some days are tougher than others. Today was a tough day, not from the day or date, but because we took some things back to the hospital that we had borrowed from the Recreational Therapists. The easels had held Evan’s last works of art from his first art show. We also took unopened LEGO kits for the Christmas room, and some munchies for the staff, and pictures of Morgan, Pixel and Evan’s garden; and most importantly for the nurses and staff, we brought ourselves and our broken hearts. We understand that misery loves company, and just as we are healing broken hearts, so is the staff at the hospital. Anyone who had come to know Evan is trying to mend their hearts and make some sense of his death.
The hour commute to the hospital gave us a chance to reflect on the many trips we had taken with Evan. We stopped for breakfast at a familiar haunt and then for gas at a familiar station then we parked in the familiar parking lot and tool the long familiar walk over to the clinic. Then we saw the bittersweet faces, the joy at the courage to show ourselves, and the bitter memories of how we had come to be so familiar. And there was a new analysis on grief that entered our discussions. We unilaterally added to the five stages of the Kübler-Ross model of grief. To Denial, Anger, Bargaining, Depression and Acceptance we have added the element of Parental Guilt when a child has died.
As a general rule, it can be safely said It is patently ridiculous to believe that a parent may have committed some act or omitted a prayer that intentionally contributed to their child’s death. There are of course those cases where parents under extreme emotional distress have harmed their children but for parents of sick children there is nothing more they could have done to save their child within the scope of their knowledge, diligence, faith and money. But perception is reality, and parents of children who have died perceive they are living in hell.
Every morning brings fresh confirmation that their life is not a bad dream that the child is not sleeping quietly down the hall and the cold dull emptiness in the stomach is confirmation that their precious child is dead. And with that pain comes the nagging ‘what-if-I’ questions or the haunting memories of decisions made and the 20/20 hindsight of retrospective judgment.
Parents, like the US military, understand that the first goal is to get everyone home safely. When a child dies; whether by random accident, violent act or disease, the first thought through a parent’s mind is, “What could I have done better to protect my child?” and then in short order, “What if I had only left earlier/later or stayed with them a little while longer or asked for more/less/different medicines/treatments?”
There is a fraternity of parents who have lost children. Some lost children at a young age, some teenagers, some as adults. Some saw their children die from accidents or carelessness. And yet others watch in agony as their child is taken from this world by the actions of microscopic cells and an inability to understand or effectively combat those forces. But none of them can claim to truly know the pain; there is merely the silent up nod of a knowing face that is carved from the granite of pain that only melts into a gargoyle of anguish if pushed in the wrong direction.
It is at times like these that those who think they understand will offer the dumbest platitudes with the best of intentions; because if they truly knew they wouldn’t say anything because there are no words on the telepathy of a hurting parent. We have come to know some of those unfortunate souls. There are those who lost children to miscarriage, and others to new born deaths. Here are the parents of a 7 year old who was hit while riding a bike or the other to encephalitis or to a form of leukemia. Or the fifteen year old killed by a drunk driver or the 30 year old who died of lung cancer when they had never smoked a day in their life.
And the overwhelming common theme to their grief is the personal unrelenting guilt. This is guilt of reflection and of condemnation. This sense of inadequacy is the feeling of guilt, of unfulfilled expectations and unmet dreams. And along the way are the three common statements, “How are you?”, “You were the best parents”, and “He was so talented”.
The truthful responses are, “As well as we can be, because this sucks.”, “If we were so good, how come our child is not here?” and “Yes he was very talented and showed great potential that the world will never get to experience because of our failings as parents.”
This is not a ploy for pity, frankly it is profoundly troubling to hear attempted words of comfort from those who have never experienced this loss. (NB: The loss of a child is completely different than the loss of a sibling, parent, or friend.) The unspoken look, the acknowledgment of circumstance is as good as it gets in this arena. This is because the loss is as unique as the child, who no one knew better than the parent. The child into whom the parent poured love, time and more love to enable future success and happiness, no longer lives; except in our hearts. Their bodies having been broken on the rocks of death as the storm of life raged on in blind testimony to the fragility of life and the eternity of death.
And all of the above was lived out again in that brief visit back to the hospital. Next on the schedule of our day was a visit to our other favorite place, Hospice. A the Hospice office we dropped off an ornament special to Evan for their Christmas tree of Remembrance that celebrates the lives of all the people they had provided hospice service to in the past year. This was the last day and the last hour that they were taking ornaments, and Evan’s LEGO Nutcracker from 2011 was only the second ornament on the tree. Please come along on this journey, the Hospice office helps 5-10 live patient families at any given time, or about 20 patients/month, or meeting the final support needs for over 250 people in a year. And only 2 families had found themselves with enough strength to realize that just like the nurses at the hospital, so too did the hospice workers need the timely reassurance that the love for their patients did not go unnoticed. But death has a way of robbing everything: Life, support, love, joy and faith.
One of the critical pre-death preparations for patients and families is validation of a higher power (I use the lexicon of twelve step programs because I do not wish to confuse doctrine and dogma and positional authority with the essence of the circumstance which varies from individual to individual) The presence of a higher power allows for the introduction of faith (Higher Power does exist) purpose (My death has greater meaning) love (I matter enough that the higher power has other things in store for me) and comfort (When I am gone, there will still be a higher power looking after my loved ones)
Post-death higher power awareness takes on a completely different set of words, meanings and emotions. Most shared, “What were you (the HP) thinking? I don’t understand how you (The HP) believe that this was in my best interest or the best interest of my loved one?” Secondly, “If this is loving me, could you love me a little less?”
In the pre-death world, the living hold up glass mirrors that they peer into for reassurances of love and peace, hope and joy. At the moment of death, the mirror is ripped from our hands, shattered on the cold stone floor of life. And we are left to either try and piece back the pieces by ourselves or to let our higher power create the most amazing and beautiful mosaic of life if we have the patience and the peace. If we do not possess these skills and attributes, we are destined to try and patch the pieces together with the help of narcissism, self-loathing, depression drugs or alcohol.
Completing those two activities before 2:00 pm meant it was time for a small repast and then onto making birthday party invitations for our daughter’s 18th birthday. She is doing a Build-a-Bear party, how cool, how ingenious, how mature to recognize living with a child’s joy is the true goal of adulthood. And then Home Depot for materials to permanently mount Evan’s LEGO under Christmas tree train track. And finally home for pizza and some quiet time to reflect on a ‘tougher’ day made more manageable because my wife took the time to ensure that there would be just enough time for reflection and memories while getting things done. She is a modern day miracle worker of balance, efficiency and help.
Now if I could only get Pixel, Evan’s dog, to better mind her manners and keep her nose out of dirt and garbage. . . but that is definitely for another day; but for now it’s off to work in Evan’s Garden and then onto to youth soccer coaching.