Funny church sign
I just re-read a post I wrote a while back about my waning Catholicism, despite the lifetime of church and a true appreciation of the beautiful traditions, art and literature that lie at the base of the Catholic faith. It was called "Dwindling" and I realized tonight as I read it, that the dwindling has increased. I haven't taken my sons to church at our parish in almost a year and when Sunday rolls around, I still feel a twinge of guilt. Nonetheless, my boys are deeply spiritual, and I talk about spirituality warmly with them all the time. Today, in response to some of the news about the enormous earthquake in Chile, Oliver said I hate that God makes earthquakes. I told him that God didn't do any such thing, that earthquakes were a natural, albeit terrible process and that surely God and good were found even in the middle of it. Oliver then said what about seizures?
What about seizures? is what I am thinking right this moment. As I typed those words, I heard the lonely cry come from Sophie's room which means she is seizing, a deep cry that is primal and makes the hairs on my arms rise and my heart beat fast, no matter how many times I've heard it. I admit to wearily getting up and going to her bedroom, only five steps away. I sat down next to her, realizing that the seizure is happening in her sleep and it is over. I smooth the hair away from her face and place a dry cloth under her head where she has drooled. She is already back asleep and I sit there for a moment and wonder what the hell? I wonder what the point of taking two powerful antiepileptic medicines is if she continues to seize erratically, usually several times a day? I wonder whether the little white pill that I have to pay a lot of money for and get from a pharmacy in Canada is making her worse, putting her into a sort of trance during sleep that seizures love. I wonder whether this type of seizure might happen silently and kill her. I stop wondering that, say a few words of peace and leave her room. I come back here.
What about seizures? Now I am spiritual enough to feel the presence of God, of something ineffable in just about every waking moment, but I'm not religious enough to believe that god's hand is in this, somehow. The only faith I have in science, probably, is in defining that seizure as an electrical disturbance in a wildly dysfunctional brain.
I am bone tired -- and not in a physical way if you know what I mean.
When I pray now, I pray for mercy, believing that mercy is random.
I began this post with the intent of telling the story of Oliver getting into the car when I picked him up at school on Friday afternoon. As soon as he was sitting down, buckled up, he said, Mom, is fuck a bad word? Henry, in the front seat, gasped and looked at me.
Yes, it's a very ugly word, Oliver. You should never use it is what I said and then he told me that he saw it written on a wall and his teacher put tape over it (I wondered whether he had sounded it out and thought given his reading difficulties, it was pretty darn good). A few minutes later he said So how come fuck is such a bad word? And this time, it was just so obvious that he wanted to say it, to feel the thrill of the verboten, so I just said what I've probably said at least a million times in his almost nine years of life: OL-LI-VER!
When I began writing this post I debated whether or not to write out the word because I do feel a certain frisson when I see the word, hear it or say it. I was going to use all those little symbols after the letter f.
But you know what?
What about fucking seizures?
There's so much to say and like about your post that I don't even know where to start. But at the bottom of it is a parent who cares for her children. And to that I tip my hat and bow to you, Madame. As for your boy and the swear word, both your initial reaction and your eventual retort had me nodding my head like a headbanger in a heavy metal concert.
ReplyDeleteMany thanks.
Greetings from London.
Ah...so there with you...
ReplyDeleteElizabeth, I have been composing a response to your post for quite awhile this morning. Trying to find words of wisdom from a former southern baptist who is now a unitarian. Trying to find words of hope. Trying to find words of comfort. I'm at a loss. I'm simply wishing you a "day at the beach" with the children.
ReplyDeleteBonnie
I used to be Catholic. Before I abandoned my faith and severed my relationship with God. Sometimes I miss it, most times I am just angry.
ReplyDeleteI use the f-word a lot myself...probably too much, but the anger gets jammed up in me, needing a release, and the F is the only thing that sometimes un-clogs the blockage.
Great fucking post though...
:P
There are times (many), when no other word will do. I used to think Rojo would think it was his first name, as every sentence using his name began with that in those early years.
ReplyDeleteYeah, what about fucking seizures!!!!
ReplyDeleteRight there with you.
I'm truly sorry for your struggles but I do love this post. Your honesty. I'm a fully lapsed, (still recovering) Catholic so I can give no encouragement in that direction. However, I can surely relate.
ReplyDeleteA word about kids asking these questions about ugly words. I don't know if I'm right or wrong, but my philosophy is to let them ask, let them use it during the asking. I think the freedom to ask at home and the knowledge they'll get a free pass during communication with their parents (yes, even at the dinner table) helps take away the thrill of using it elsewhere with their friends.
I do know my kids think cursing is a bad thing, even if they hear their parents using the words far more often than I'd like. My high schooler was just saying yesterday, in a disapproving voice, that a friend of his has started cussing. So I think SO FAR my strategy is paying off.
The problem with that word is that it is not used well. Over-used, its effect is really lost. And, as you point out so well in your closing moment, there is a need for the word.
ReplyDeleteAnd you deserve to use it.
Oh Elizabeth. You are such a good mama to your Sophie and your boys. I am sitting here and trying to find the right words, yet they all seem too crass. Just wanted to let you know that you are a wonderful and beautiful woman, and I feel so happy to read your words.
ReplyDeleteYes, it seems completely appropriate in that context.
ReplyDeleteI quit swearing after I had children - just QUIT. And then, after Katie was diagnosed with cancer, I found my language deteriorating FAST. I gave the kids permission to use the word "fuck" when referring to the tumor and the illness. I always thought of the tumor as "that fucker." So fucking seizures? Yes, I do agree.
It's funny...I swear now, more than ever, and I always say, "Pardon my language" after I do! I think it's unladylike, but I still do it.
shntih shantih shantih
ReplyDeleteor as Joyce put it: "shan't we shan't we shan't we"
I thought about Sophie when I went to church today and the preacher was asking god in his mercy to touch physically those in need and I wondered why that almost never happens. Why do we keep praying for that which never happens?
ReplyDeleteFuck if I know.
Fucking seizures.
And I judge potential friends on whether or not I can comfortably say "fuck" in their presence.
I think I can be friends with you.
I'm constantly dropping f*bombs.
ReplyDeleteYOU are one f***ing strong and f***ing amazing woman-mama.
And I honestly don't think God gives a fuck about the eff word
Bombs away
I once heard a commentary by someone, can't remember who now. But two people were talking about Hitler's mass destruction and what I remember is that a person posed the question, "Where was God?"
ReplyDeleteThe answer, "God was in the camps with the people."
Last I checked, God has no religion.
I don't know the pain of a child with epilepsy but I know the pain of a sister with it... And it sucks. I'm sorry that they haven't figured out a medical cocktail for your Sophie that stops the fucking seizures. This former Catholic will also pray for her to have a little peace....
ReplyDeleteI don't know what to say.
ReplyDeleteI remember reading about someone who was dying of cancer and when asked didn't she question God who would do this, she replied she asked why not. That the world is what it is and we are supposed to be thankful for the good, never assume anything better. Sort of the less Western attitude. Joy in our gifts . No guarantees.
I don't know.
I imagine myself ripping the walls apart with my bare hands if I had to watch my child gripped by suffering.
You're right. There is no higher-power plan in what happened to Sophie. She's a victim. Her condition should make us all want to shout about fucking seizures and diseases without cures and innocent victims and families who suffer.
ReplyDeleteEvery day, you do everything you can for her, and for your family. It's wearing. But you see the moments of calm as gold; and cope with the seizures as best you can.
You tell the world what Sophie's life is like, so others will care enough to do something. And to keep your sanity by sharing the load.
And you take everyone to the beach every chance you get, a pure spiritual observance. Sounds like religion to me.
perfect posting/timing.
ReplyDeletedid you realize the first week of march is no swearing week??
i think NOT!
thanks for an extremely moving post, laced with humor and your beautiful heart woven through out.
ah, Elizabeth, I always love your posts. They are so honest, so real. If I were sitting at Sophie's side during a seizure I'd be saying "what the fuck! what the FUCK!" every time.
ReplyDeleteYes, indeed... what the f*@%$? There, i did the little symbolly-thingies for you :). First of all, Oliver cracks me up!
ReplyDeleteSecondly, i love this post... as I always love your post. But it reminds me of how I wish you lived near me... theres no one here in jersey who thinks like you do... and i feel like I have a long lost friend when I read your posts (not tryin' to be creepy here ) ;)
I too worry about the noctornal seizures - most of my daughter's occur while she sleeps too... though hers are not as frequent as sophie's. everyday when I go into her room to wake her in the morning, I think "is this the day she doesn't wake up bc of some crappy status epileptus that happened at 2am????" It's an awful feeling....
i too pray for mercy, and i too believe it's random... but i pray bc its the only thing i have the power to do right now :)
Hi i am new here, came via your comment on Hill Country Mysteries. When i saw Aquino i thought maybe you are Filipino and your little thumbmark profiles have black hairs.
ReplyDeleteYou are a brave and wonderful mom, i salute moms like you. I have a friend in Hawaii whose only son has it too. They said many deliveries there had this condition. Maybe it is not yet properly research on but maybe some unusual mix of conditions and medicines during birth give these resulting symptoms. However, when you study karmic consequences, past lives, etc. somehow many questions get answers. I wonder if you read Brian Weiss articles or books. I am still a Catholic but not a devote one, and i am into other alternative philosophies. Maybe my belief now is the integration of many religions as i have lots of those in me. I got lots of answers from beliefs by meditators, karma, and the philosophy that WE ARE ONE!
God bless you. I am sure you are learning a lot spiritually from having Sophie, and Oliver. That is a gift for you to improve your soul. take care.