Today was hard. I was inarguably consumed by the anger stage of grief. Before I write though, I want to preface this post by saying…
I do not share our experience for pity or attention. My writing is a way to help me process through the harder parts of our journey. Sharing what I write fulfills a different purpose though. I have chosen to allow my life to be seen by the world because 4 years ago, when the wounds of Oliver’s injury were fresh and I was suffocating in my grief, I wish I would’ve been able to read about this process from another woman in my shoes. I wish I would’ve known that this is how it is for most of the people who live a life with a medically complex child. The denial, the anger, the bargaining, the depression, the acceptance, are all part of it. And they are absolutely valid and important things to feel and move through.
This morning I opened my eyes and sighed… the world was still the same. This wasn’t a bad dream that I could escape in my waking hours. This is my life. My son could’ve died last week. He didn’t. But he could have. We met with the palliative team and talked about hospice and end of life care. It was intense in the most unimaginable way.
During these times of crisis a great strength arises within me. The tears seem to vanish and I am acutely aware of everything. My mind is perfectly alert, answering all the doctor’s questions thoroughly, advocating for Oliver’s best options and making sure that no one has missed anything. I stand by my son’s bed, vigilant in his care, ready to fend off any unnecessary suffering. It always surprises me how well I can hold it together in that moment. But that is the calm before the storm.
Each night when I go home I process a tiny piece of the trauma. There are a few tears, maybe a deep conversation with a friend. But I don’t let it all out. That would mean complete destruction and I can’t risk that. I must stay strong.
And so I keep up this charade for as many days as it takes to get him back home. And then the storm comes. The physical aches of my exhausted body, the torrent of emotions in my heart and the rollercoaster of hellish thoughts controlling my mind. The pent up strife of the week prior breaks through the dam and floods my life with grief. And I feel like I’m drowning.
So I try to swim. At first I can barely keep my head above the water. I reach out for any lifeline people are willing to throw, desperate to avoid the pull of the deep water, willing me to give in to the darkness.
There is a fine line between wallowing in self-pity and honoring the raw human experience that is grief. The line is different for everyone and each must define the parameters for themselves. For me, I recognize clearly the stages I go through each time. It’s uncanny how accurate they are. I know that I must keep myself just busy enough that my mind will not consume me but also give myself the space and permission to really feel my feelings.
I know as the days pass by, the water will recede, soaked up by the support network surrounding me and by my own true acceptance of our new reality. But in this moment I am still fighting the current of despair.
Today I am angry that my child needs support from machines and medicines to stay alive. I hate that I am pouring a processed formula made by Nestle into a feeding pump that leads to a surgically implanted port in his stomach. That shit is fucked up.
I hate that I feel terrified to let him out of the house- that everyone seems like a germ-infested enemy just waiting to infect my baby and send him back to the hospital. The world seems scary and dark today and I miss my optimism.
I hate this feeling and I just want to run away. I want to live in a world where my son jumps up to play with the other kids. I want to travel with my kids, not worrying about medical supplies and therapies and the nearest hospital. I want to run through the forest with Oliver barefoot by my side, upright with fully functioning legs. But none of those things are possible and usually, I can accept that. Not today though. Today life just seems wildly unfair and all I can feel is anger.