Wednesday, September 30, 2015

How We Do It, Part LV




I drove up Venice Boulevard today, back from a doctor's appointment on the west side, no traffic, blue skies, hot dry sun, the silk floss trees dropping their pink petals. This is what I thought. Sophie had a huge seizure this morning, a big one, related, I'm certain, to the fact that we've cut her drug in half. I rubbed some THC on her gums during the seizure, and she recovered fairly quickly. I don't know what's what, but what I do know is that I've lost all trust, or maybe not all but most trust. You must have figured that out all ready.  Trust in what if not what's what? I don't remember exactly when I became unmoored -- was it when that doctor from New York City told me that I'd had a good idea when I suggested that the three drugs my baby was on were perhaps interacting with one another? Was it that moment when he hmmmmed on the phone and I realized the gig was up? Is it because I'm a woman, formerly a girl who was taught to please, to defer to authority, to pipe down, shut your mouth, too opinionated, your head in the clouds?Just the other day, I was told, Who told you that you're special? What makes you think that? with all the implication that I'm not, which I know, at last, to the questioner. But this -- this trust -- lost -- the sense of trust lost, the yearning to hand it all over (not let go, let god), the impossible decision-making, the plunges, the leaps. The silk floss tree blossoms are like windmills on Venice Blvd, spinning and falling. The trunks are spiked, so sharp that we shaved them from the tree in the backyard when the children were young.  My windshield -- wind shield -- covered with flowers that fall, whole. She seemed confused today, her brow furrowed, her eyes too often swiveled to the right, a jitter, a blip. I imagine taking Sophie under my arm and running, running to China, away. She's still that baby, under my arm, so many trips to China. Don't get me wrong. I'm not going anywhere but there in my head. These seizures, those, this loss, that baby, trust gone -- they are compressed in time, over and over, just mused over on Venice Boulevard while I drive.

25 comments:

  1. We're moving back to Calif the end of October and I am seriously contemplating whether we even need a neurologist anymore. He's on a low dose of Keppra which I don't think is even helping, not sure why I have him on it. Actually, I do know why, only to appear that we're still in the "system" and... because it's been drilled into me that he MUST be on something. He's got a broken VNS in his chest that I don't want to fix because it didn't help and he probably doesn't need to be on a med. The cannabis is the only thing that helps his seizures. Can I legally not bring him to a neurologist? I feel like they'll only harm him or maybe even jeopardize our use of cannabis. Can we live off the grid forever? I have soooo little trust in neurologists anymore.

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    1. I hear you. I think it's always good, though, to keep one in your stable. Or you can just flee to China in your mind like me.

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  2. (all) trust gone doesn't seem like a good place to be, but you're still driving on, and i hope you'll get to a place that where you can find trust again

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  3. For what it's worth, you ARE special, regardless of what that person said.

    Sometimes you gotta wonder about doctors. I know you wonder all the time.

    I think silk floss trees are the same ones we call kapoks in Florida -- I love those trees. So beautiful.

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    1. They are beautiful -- and such a strange combination of sharp and soft.

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  4. It's tough when you get to the point that you realize you are the only expert on your child because you want to make the right choices and it would be nice to have a professional back up those choices and tell you yes, you're doing it right. But you don't have that and it must be like living without a net. Elizabeth, trust your gut. You know Sophie better than anyone. You've seen her seizures decrease dramatically. You've seen the light come back into her eyes. You are moored.

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  5. Trust your own inner guidance.

    "Who told you that you're special? What makes you think that?"

    Stay as far away as you can from someone that is so disconnected they would deliberately try to hurt you with such mean spirited questions.

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  6. I'm telling you you're special. That's who. And I know special.
    You know more about Sophie than anyone in this world. You, with your tiny little mother mind, have figured out what is right for her, what is not. You are The Mother. You are the fierce one. You DO carry her under your arm, right next to your heart, every second of every day and night.

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  7. Elizabeth this is the first time I've commented but the comment about not being special just made my blood boil. I couldn't agree more with fullsoulahead.com, I hope you can stay far, far away from someone who is so intentionally mean. I know it's been said a million times, but the comment truly does say far more about that person than it does about anyone who would have been on the receiving end.

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  8. Elizabeth. I feel your loss of trust. I understand it. I ache for it.
    I hope today is an easy day, a good day for Sophie. I hope the same for you.
    Trust your heart. Trust your gut. Trust your experience.
    And fuck whoever said that.

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  9. Maybe it's less that the trust is lost but was misplaced all along. I sure do trust you, and I think you trust you, too. And maybe that's what Sophie needs most. (and Henry and Oliver, too). Love you.

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  10. Somehow there is trust in the middle of all of this. I mean, it feels like that, when I read what you wrote here. Like the kind of truth that we can't see when we're in the middle of something big and bad. I'm saying it badly. But I see the beauty in you, the raw brave beauty of you and Sophie and the love that doesn't fail and the Love that exists for you, for you all, even when it doesn't seem to. And I'm trusting in that, for beautiful, beyond special, you.

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  11. Oh, no. Yes, you knew, but you didn't trust yourself STILL. Now what? keep her at that half dose? Go back to where it was? Go to 90% of what it was, 80%, what percent? You knew that the neurologist had no idea and was just guessing, didn't you? Now you know that 50% was likely way too much to decrease.

    I don't know what to tell you. Any info on how that med is supposed to be weaned? If you can get that info, maybe halve that weaning schedule, putting a delay on the Onfi weaning for now. Clearly, you have a better sense of what Sophie's balance is than her doctors, likely any doctors. I am sad, sorry and angry that any parent, anyone be put in such a situation.

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    1. Hi, Cath! Actually, no. You've misunderstood me. It was absolutely necessary that we cut out her Vimpat with speed. That WAS my gut feeling, and we did it fully aware that she was going to have withdrawal side effects. We also have THC and CBD to help with this. You don't have to tell me anything at all! I do appreciate your support and kind thoughts. I'm pretty certain that we'll get through this period as we've gotten through all the other periods. The difference now is that we have cannabis.

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    2. That makes me feel a little bit better that you were prepared. Do let us know how this fast weaning goes, with the THC and CBD to help Sophie through this. Is the Onfi weaning continuing, or is it on break while the Vimpat is being withdrawn?

      You need a photo of a precarious balancing act to show what you are doing right now! No one finds photos that fit the sitchooation better than you.

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  12. Trust is something I give away freely but I am learning now that trust is something that is gained. It is sad that we live in a world like that. At the end of the day you are the only one that Sophie can rely on but you already know that. Sending love, for what its worth. ;-)

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  13. The things that pop in to my head as I read this are, first of all, Anne Lamott's statement that the opposite of faith isn't doubt, but certainty, something that most physicians have too much of (falsely, I believe), and second, that nowhere is it anyone else's job to tell someone that they are special (although they are certainly welcome to affirm that fact) because, dammit, WE ARE ALL SPECIAL! And we are all the ultimate authority on ourselves and, often, as mothers, our children.

    I would like to point out that even as you falter with trust of outside sources, you obviously still know what's what when it comes to the rubber hitting the road. Sophie seized and you did what you knew, instinctively, you rubbed THC on her gums and she stopped seizing relatively soon. It is so hard to not buy in to the voice of authority that is trying to remind us how little we know and, by contrast, how much they know. We are conditioned to do that in so many ways, but as I get older, I become ever more convinced that the loudest voices proclaiming their superior intellect and authority belong to people who are trying to convince themselves of their prowess more than they are trying to convince me. Keep on keeping on, sister. Sending love and light.

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  14. Unmoored doesn't mean alone. We are all in this little boat with you, Elizabeth, like a life jacket we will make sure you don't drown.

    It's very hard to trust others, just in general, but knowing that they are the one's who've made the most mistakes - gut wrenching. Having the courage to make and trust our own decisions may be even harder. I believe 100% in your ability to make the best decision. Whether it's the right one or the wrong one, it's the best. This child is skin, bone, blood, heart and soul of your own body, Elizabeth. No one can get into that place. No one is a part of Sophie in the way that you are, truly, a PART of her. So in all matters, the best decision will come from you, whether it's to follow the doctor's advice or your own gut. I believe it's always what Sophie would want - because she trusts you more than anyone else. SHE'S the strongest member of your team cheering you on and believing in you.

    The definition of special is: exceptional, uncommon, remarkable. How strange it is to me that anyone should not be able to see that in you and your family. All they would have to be able to do is to look into your eyes, Sophie's eyes, Oliver's eyes, Henry's eyes -- but a lot of people just can't see.
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  15. I'm reminded of so many things from my journeys with Miel, with a thousand iterations of loss of trust and confidence, including in myself. And that impulse to grab the baby and flee. I've always thought there should be another set of initials for this state, not PTSD, but something more like Ongoing Traumatic Stress Response. The war isn't over. I hope you'll give us updates on Sophie as you accompany her through this narrow passage with your flower-strewn shield. Holding both of you in my thoughts.

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  16. Beautiful writing, as always. I'm sorry for all the suckiness. Those petals...

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  17. As you always do in your words, I am there and can see the sky the petals Sophie's eyes the wind shield your hands on the wheel like they were mine. What makes any of us important? Our sum of moments within us and not one of those moments unimportant. You matter. Sophie matters.

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  18. As you always do in your words, I am there and can see the sky the petals Sophie's eyes the wind shield your hands on the wheel like they were mine. What makes any of us important? Our sum of moments within us and not one of those moments unimportant. You matter. Sophie matters.

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  19. I completely understand this...You are not alone, there are plenty of us who live with a lack of trust in the medical establishment and the PTSD that you describe too...You and Sophie both matter and to hell with any idiot, no matter how credentialed, who says otherwise.

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  20. Just catching up. You're a special. The other person knows it too. I hope the wean gets easier soon. Dear Sophie.

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