This last week has brought about a terrifying change in Olivers epilepsy. Twice now he has stopped breathing during his seizures. It’s not because he’s choking. He just stops. All inspiration and expiration ceases, he becomes eerily still, and his heart beats so hard that it shakes his g-tube button.
These seizures are different than any he’s had before. In the beginning, he appears to be watching something off in the distance. We can call him back but over and over again his head and eyes turn toward something. He laughs and smiles and seems to be completely at peace with whatever he’s experiencing. I’d give anything to know where he goes. But then the seizures progress and he quits responding to us and breathing stops.
Thankfully both times we’ve had his rescue medication near and it was successful at bringing him out and allowing him to breathe. But obviously there is no guarantee that it always will.
SUDEP is Sudden Unexpected Death in Epilepsy. The warning signs include having an increase in tonic clonic and nocturnal seizures and also breathing problems associated with them. All of these have changed significantly in the last year for Oliver. With these progressions of his epilepsy, it’s now becoming clear that, aside from pneumonia, it is the greatest threat to his life.
This latest development has led to some painfully dismal conversations between Conrad and me… conversations that no parent should ever have to have. And I have found myself, once again, stumbling around in the darkness of my own resurfacing grief.
During these periods of heightened trauma, writing has always been helpful in processing the experiences and finding my way to a place of peace with what has happened.
I wanted to share what came through while journaling after his last seizure because I think it gives voice to the reoccurring themes of complex trauma, hypervigilance and mental health struggles that so many caregivers face in silence as we navigate the ever changing meanderings of medical complexity.
I have been operating in a daze, watching every move, every twitch, every extra drip of drool. Every time he looks off in one direction, I brace myself for the coming storm.
While I try again and again to practice the principles of non attachment, presence and acceptance, during these times of crisis, my mind slips into future potentialities.
What would life be like without Oliver here? Is this where we are headed? Could I have done anything differently to avoid getting here?
I know that statistically speaking, I will likely bury my child. But while one part of my heart lives conscious of that reality, another part dwells firmly on the ground of denial.
So, today, I go about the motions that I must but I am not here. I am off drifting aimlessly in a world of what ifs… Wondering what lies ahead and imagining a life without my son’s squeals.
Today my voice cracks when I speak, haunting memories cloud my mind and joy seems so far away. So I change diapers with distant hands and measure out meds with blurry eyes.
Today, I parent from a place of absence over presence because it’s the best I’ve got… and that’s ok… because I am surviving.
Today, instead of judgement for all the ways I’m fucking it up, I choose compassion for the parts of me doing their best to hold it all together.
Today self care will look like an extra cup of tea after my sleepless night and sharing cookie dough ice cream for breakfast with my boys along with a helping of non judgement because who cares anyway… this life is never certain.
From the perspective of an outsider, these thoughts may seem easy to counter.
“You don’t know he will die young.”
“You don’t know that he will ever stop breathing again.”
“You don’t have to think about those things. Just be here now.”
And while all these things are true, to say them to a caregiver in crisis, would be to misunderstand the scars that complex and repeated trauma leaves upon the brain. There is a reason so many of us are eventually diagnosed with C-PTSD, anxiety disorders or chronic grief. We have held our children in our arms and begged their souls to stay. We have knelt at their sides as the sirens come closer. We have been woken a thousand times by blaring alarms or lungs gasping for breath.
These things leave scars that no one sees.
So if you witness a caregiver in their moments of crisis, try to hold space rather than trying to talk them out of their fear. Trauma is not rational. It’s a wild emotional beast that can capture us despite our best and most valiant efforts. Time and space to express and process are the greatest gifts a caregiver could receive. It takes them both to shake off the blow and reorient ourselves, turning away, once again, from that darkness which consumes and back toward the light of hope ahead.
I can only say that you are an amazing mother and doing all you can to ensure Oliver is well cared for and loved which can be seen in his precious smiles. Do whatever you need to do in order to carry on…sending love and prayers.
You keep doing what works for you. Take the breaks you can and do need, and know that our love for you, and whatever the future holds, we know you are the best mom for Oliver. You and Conrad are giving your boys the best life and they are both happy and secure, and are so loved.
I am a mom of a special needs son as well. Holding space for you, mama and sending all the love, support and light I can to you and your family. Remember to breathe.
Despite all the challenges lain are your feet, we look forward to getting to know you all better and building community! So glad you found us at Sea to Sound this year and we hope we can have some fun adventures discovered in the area with you!!’