Sophie had a hideous day yesterday and suffered through multiple tonic clonic (grand mal to the uninitiated) seizures. I have no idea what caused the downturn, and so far today she is much better -- basically sleeping off the drugs. I gave her Diastat (rectal valium) and extra cannabis.
Last night I had some full moon thoughts, though, did some dancing with the dark side in the lead until I was bent backward, his hand bruising my hips, my hair and arm trailing the floor.
How much can a person take? They will do nothing but pump her up with drugs in the hospital and to what end? Why is there no one to turn to during these times, a professional that I can trust? When has there ever been a professional that I can trust?
When released, I cried on the edge of the bed with my head in my hands because I'm sick of this shitty dance.
If the dance were a tango, imagine me quickly turning my head here, swiveling my hips and leading the dark side in another direction.
Sophie can take a lot. She will continue to take it until she can no longer. I have been traumatized over these past couple of decades for good reason and have a unique constitution that is repelled by the practice of traditional medicine. I do not want hospital intervention for my girl.
I sat on Sophie's bed, brushed the hair from her forehead with my hand and murmured soothing words to her. I told her how much I loved her. I dissociated from the terror by acknowledging and then inviting it to stay. I called a friend and told her that I was afraid.
It's amazing how terror dissipates when it's acknowledged, when I don't push it away.
Yes, I am afraid that Sophie's small body won't be able to take these bad days. Yes, I am afraid that she will die.
Her small body may not take these bad days. She may die.
The thing is, her small body took that bad day. She is very much alive. Not because of my thoughts, of course, but because of the dance, her own dance, the one that I can really not control, even as I dance along, the one that I can only love.
Because you have kept that small body as alive and healthy as anyone on this earth could have done. With your strong arms and back and brain and heart.
ReplyDeleteThe fear is so visceral at times that we can't give it the words you've just written so accurately. It is an intimate and terrifying dance. Sending love and comfort today and strength for the next time and the time after that.
ReplyDeleteKnow that you are in my heart
ReplyDeleteYes. You are right, and bless you for sharing this with us. We cannot keep them safe; we cannot control anything. We can only witness, offering our presence and love. Sending love to you.
ReplyDeleteI love you, Elizabeth. Please take care. Sending love to you and to Sophie.
ReplyDeleteWhile you love her dance, I'll love yours❤️
ReplyDeleteI hate that you have to live with such fear. I hate that Sophie has to go through it all. I see you and I honor you.
ReplyDeleteLove to you, brave lady. Strong mother.
ReplyDeletePlease know that while physically far away from you, some of us are right there beside you in spirit, often crying along with you for the very same reasons.
ReplyDeleteThank you for articulating what is so difficult for many of us to do. It is so like a tricky tango routine.
PS When C. has a string of seizures, I give her THC - up to 10 drops - and find it calms her almost immediately. The oil contains: 33 mg/g THC and 1.5mg/g CBD. (The neurologist was alarmed by this treatment and insisted that THC doesn't alleviate seizures.)
Wishing you a good long seizure-free stretch.
You are remarkable.
ReplyDeleteSending so much love.
ReplyDeleteI had a patient once when I working on medicine who kept seizing, over and over and over. I felt helpless too. Nothing we did, nothing we gave this poor patient stopped the seizures. Sophie is better off with you at home but I can imagine how frightening it is to sit and watch helpless while your baby twists and seizes. I wouldn't want to be alone.
ReplyDeleteOne day she will lose the fight, as will we all. I worry about Katie as well. One day she will end up with an infection that will turn to sepsis and our lovely antibiotics will be powerless and my baby girl will lose her fight as well. I breaks my heart because I can't imagine my life without her but I also can't imagine her life without me.
Sending hugs.
Sending you lots of love.
ReplyDeleteSending positive thoughts and the hope that Sophie (and you) will have better days ahead.
ReplyDeleteBest,
Bonnie
Oh dear, what a dance it is. Your vivid words chilled me to my bones. Thank heavens for friends, right?
ReplyDeleteYour courage is boundless, Elizabeth, as is your mother-love. I suppose the two are deeply intertwined. What a difficult thing it is to lean into fear as often and and thoroughly as you do, but I'm so glad to know you have friends you can call who will listen and let you be afraid without being trite or fearful of your strong emotions. Know that I am holding space for you and witnessing all of it. Love.
ReplyDelete
ReplyDeleteI Love You, Liv
I love you. I love your writing. I, we, bear witness and hold space for you, for Sophie, for all of you.
ReplyDeleteThis brings me to my knees. I am glad you have the kind of friends you can call and speak your darkest fears to. I wish I had the magic to change this, but since I don't, please know I am here, loving you hard.
ReplyDeleteIn this and other matters, what else do we really have. Love and fear and which has the upper hand, in the moment. We would be that much more lost without the light you each bring, without your willingness and ability to speak the truth. I wish you each a day of peace, a knowledge of the love we hold out here for you. xo
ReplyDeleteThinking of you and sending my love and prayers.
ReplyDeleteThinking of you both...
ReplyDeleteWe, also,walk this journey, often in those dark spaces, the dark night of the soul. There are few consoling words, just one small step at a time. Our wounds never heal, no matter what other believe ... the dark never leaves for very long and the glimmer of light periodically make it all ok. I understand.....
ReplyDeleteYour courage and raw honesty astounds me, every time.
ReplyDeleteHolding you close.
Oh god Elizabeth. Would that we could all help one another so at the very least we could avoid the terror. It's so different for each of us--- the paths we choose, the doors we close. Just know you are loved and supported. 💜💜💜
ReplyDeleteFuck. I have no words. Just. Fuck.
ReplyDeleteI wish I could show up for you.
I think of you every day with love and admiration. Truly - every day.
ReplyDeleteOh Elizabeth, I can't say I know, but your words help me to catch a glimpse. Much love to you and Sophie and your boys.
ReplyDeleteElizabeth, this is so honest, so heartbreaking, so beautiful, so wise, so real. I've been reading a lot of Richard Rohr's stuff on dying before we die. Days like this lend themselves to that process so "well." Sending you much love and great admiration. ❤️
ReplyDeleteSending you all my love & hopes the music shifts. I don't know, of course, but it seems like you haven't danced like that in a long time and it must be exponentially worse to return after resting. xoxo
ReplyDelete"It's amazing how terror dissipates when it's acknowledged, when I don't push it away." I am in awe.
ReplyDeleteI am so sorry dear friend that I missed this post and an opportunity to comfort you.
ReplyDeleteI know this dance with the devil.
I am frightened of it too.
I cannot take away this pain
Or explain to you why.
I can only stand beside you in solidarity
sword in hand
and say to you fellow soldier
I am with you.
Remember
You are a paladin
a sacred soldier
blessed by a higher power
to withstand great hardship
for the love of another
whose purpose is hidden
among men.
I know perhaps you do not believe in God or a higher power
but I can tell you
what you do every single day
is indeed
sacred.
xo