Thursday, February 17, 2011
Sophie's brain has had a break of late, a break from the seizures that have plagued her for nearly sixteen years. We don't know if the IVIG is finally taking effect or if the Vimpat, a new drug, is working where eighteen drugs that came before had not or whether the new homeopathic remedy and the attentions of our beloved osteopath, Dr. Frymann have righted her brain into a semblance of calm. I actually shouldn't say calm because she is not calm. She is alert and awake and a bit agitated. She is wired,. Her eyes are large and inquiring; her hands are busy and she wants to put everything in her mouth to chew. She hums constantly and throws herself around, banging her head to the right. I imagine that she is seeking input, pressure, focus. I imagine that her brain, anesthetized, rendered nearly comatose from constant seizures is free and open but buzzing and not in a good way. I imagine that outside stimuli is immense and that she has no way to organize it all. I imagine the neurons as wired as her curly hair. It makes me a bit tired. Today, when her head hit mine as I was feeding her breakfast, tears pricked my eyes and I rebuked her. Tears came more freely then as I felt the transitory nature of things -- my fear that it was going to end soon, this seizure-less respite, my sorrow that I even have this fear; my feeling that I should be crawling on my knees to some sort of shrine in gratitude but I'm not, my worries and anxieties about money and care for her even when she has no seizures, my near-disgust that it's not enough when it is enough.
Posted by Elizabeth at 12:52 PM
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i have a small sense of what you mean. it is hard when you've been marinating in a stew of anxiety and hyper- vigilance to let go and just flow. maybe you fear being blindsided when unprepared. i send love to you and sophie. and prayers for stretches of peace.ReplyDelete
Sending you peace love today,my friend,when your emotions are running the gamut.And rightly so.ReplyDelete
Perhaps, just as Sophie's respite from seizures has her in a new place that is difficult to deal with, you are also experiencing that same difficulty. I wish you both common ground and some peace to enjoy where you are.ReplyDelete
Sending you calmness and love....and maybe an ice pack for your head?ReplyDelete
"my near-disgust that it's not enough when it is enough"ReplyDelete
Um, no, it's not enough. We of the special society of mothers of severely handicapped kids learn to be truly grateful even for crumbs, but it's not enough.
The non-seizure moments are a new experience for your brain too.ReplyDelete
Be gentle with yourself.
Ack. It's hard to get used to a new normal when you don't know how long it's going to last.ReplyDelete
Be easy on yourself.
The glass is always half-full or half-empty. I empathize with you. Seeing Sophie with her iPad, I saw that she had a mount, but wanted to make sure you knew about the RJ Cooper website, which has all kinds of disability accessories for the iPad, in case you need them, including a bluetooth speaker to make it audible in public places:http://www.rjcooper.com/index.htmlReplyDelete
love from me, too. and tears are okay... everything you're feeling is okay. i wish you didn't have to feel it, but it's okay...ReplyDelete
I think Angella is right -- how does your brain and nervous system rest when you're used to being on high-alert/hyper-vigilance?ReplyDelete
I often find myself full of mental angst. And then recently a most exceptional colleague has been battling a brain tumour that keeps coming back. And whenever I think of him, I think of how he is blameless and innocent. He hasn't done ANYTHING (except make a huge difference in the lives of very compromised children). And I can't help thinking that if only you and I and all of us parents could think of ourselves the same way. Take away all the 'shoulds' and 'what ifs' and 'if only I...' and beating ourselves over the head.
I send you loving thoughts of comfort and wellbeing.
And I loved seeing Sophie with the iPad. xo
I don't know what to say to you. What ever I say will not be enough. I wish I could help, I wish I could say it will be enough. But I don't know. I only know this must be really hard and I wish I could help.ReplyDelete
I do hope Sophie continues without seizures and finds a place of comfort and that you will be able to relax. I think this will be a strange sensation for you, relaxing. It would be a wonderful thing, I think. So from my lips to god's ear Elizabeth.
I don't know how you do it, Elizabeth. the worries i have from day to day about my children are nothing compared to yours and yet you go on bravely and lovingly, while yet aware of your mixed feelings.ReplyDelete
And on top of it all you write about this dreadful and chronic experience and what you imagine it is like for Sophie with a clarity and grace that is unsurpassed. I stand in awe.
I went off to find you a quote from Jean Vanier after reading this earlier, and can't find it now...ReplyDelete
but you know.
love love love you.
Thinking of you and sending good thoughts.ReplyDelete
It's just plain scary having another human being that relies on you so heavily for everything. It's a heavy burden to carry and it brings tears to my eyes as well.ReplyDelete
Sending a hug. And a snowball:) Cause I hear you don't have any of those way down there.
When you live with stress 24/7, and then you have a measure of relief, what does the brain/heart/nervous system do? I imagine anything and everything as possible responses; I imagine it could be disorienting.ReplyDelete
I hope that you are able to find equilibrium and rest in this space for yourself and for Sophie. May you be blessed with all that you need to navigate it.
Probably it isn't enough. But it's good enough. Hugs.ReplyDelete
I am sending you an enormous cyber-hug, because I understand what you're feeling (I know that sounds pretentious, but forgive me), and I know how hard it sometimes to be in the moment when everything is unknown. Even during the "good" times, I am waiting for the next event. Be kind to yourself, forgive yourself for your grief, and know that you really aren't all alone on this planet. I know I'm just a stranger who follows your blog, but we are part of a community here to support one another. You're doing a great job, Mom.ReplyDelete
Holding you close, my friend.ReplyDelete
Enough? Enough? it could never be enough until she runs to hug you, until she ask for a new dress or a pair of jeans, until she gets into a fight with her brothers.ReplyDelete
This is one little step and it is alright to be grateful for what we could think of as progress. But progress is not all there is. Progress is door open ajar, a window with a curtain that allows the wind in but the light must be filtered through.
I want to say from the bottom of my heart and you know I don't lie, this is the beginning, this is where her brain is going to slowly find a path to calm, when you won't be afraid and she will be wired in a different way. In my heart I hope for this so badly and so truly and so certain I feel that there is progress, even if it is not all.
Take a deep breath, and put a helmet on her so she doesn't harm herself - or you. I would come down if I could but you know right now gearing towards surgery is another wish that will come true, but not just yet. Hugs and buona fortuna mia care. The Universe is unfolding as it should.
I wish there were something I could write to ease your stress.
Ripped from your heart were those words, raw and honest. My thoughts are with you today and everyday. Again, Elizabeth, I wish you peace.ReplyDelete
The one thing you CANNOT do is beat yourself up over how you feel. It's all too much, it's always been too much and yet- you handle it all with grace and tiger-mother-strength.ReplyDelete
This is your daughter. And you have done for her with all of your heart and anything you feel at any point is understandable, real, and valid.
I am so sorry.ReplyDelete
It is sort of the lull after the storm, isn't it? When the frantic activity of a health crisis dies down and you tell yourself you should be grateful for all that went well, and instead you are left with an uneasy feeling of vulnerability - that transitory nature of things, as you put it.
Last night I made a pot of Tom Ka soup - the fresh lemongrass, the limes from the tree in the yard, the sweet sting of the chiles and coconut. I can't help but imagine a big bowl of it would help to set you right.
Whatever your pleasure, dig deep to find it today friend.
I always am in awe of you.ReplyDelete
I'm pleased that she is relatively seizure-free for now and I completely understand that "waiting for the other shoe to drop" mentality. It is so hard to remove that from our experience when we have had to be on guard for so long. I imagine Sophie is as confused as you, but I am certain that she continues to be grateful for you as her touchstone. I hope you have a strong, grounding touchstone of your own, and I second Michelle's words - be gentle with yourself.ReplyDelete
Just reading the comments here gives me such peace.ReplyDelete
Isn't that strange ?
Please give Sophie, and yourself, a hug from me today.