Wednesday, January 21, 2015

Fox Socks and Leopard Pants and Tiger Mothers

Sophie is on another drink and food strike. She has no problem picking up a myriad of toys and putting them in her mouth, though, so I'm loathe to think it a sore throat, a toothache or a canker sore.

She doesn't seem uncomfortable -- I don't think.

The agitation I feel is probably entirely disproportionate to the problem, and I'm hard pressed to tell you why this type of thing is so very difficult for me. Maybe it's just a behavior. I've heard of older teenagers with neurological issues suddenly becoming very aggressive and difficult to manage. A long time ago, I worked with a woman on a healthcare initiative who had a young adult with epilepsy. The boy was also developmentally disabled but quite high-functioning (those are the heinous terms we use), and as his seizures decreased, his behaviors increased. He was quite uncontrollable at times and at others, severely depressed. I imagine a brain screwed up by seizures and drugs, seizures and drugs, seizures and drugs and then, finally, no seizures, no drugs, a black hole that needs to fill up, a sort of chaotic world. That depresses me.

I guess I shouldn't go there. I should put on a cheery face and not project into the future. In the moment, it's all I can do not to syringe liquid down Sophie's throat. She did finally just drink a cup of juice and water, slowly, lying on her back. I kept bringing her cup to her lips and holding it there until it dripped down her throat and her reflexes kicked in. I remained calm in a sort of willed manner and kept at it for twenty minutes.

I could never do what you do.
This is how we do it.

I can relax a bit now, tamp down the strange and primitive mother tiger fires. Wait for things to resolve.


  1. I think it's just instinct, to want to nourish our kids. How can we not want to do this? The willed calm is impressive, a tribute to your strength. Hope things get resolved soon. Sending love to you and Sophie.

  2. You know all the things we've dealt with in Max's care...and the one thing that has been the hardest thing for me to come to terms with was getting him a gtube. But, he stopped eating, and we had no other option.

    I fought for that first year with a gtube to try to get him to eat and just supplement the rest with the gtube. I wanted to feed him. But, he thought it was great that he didn't have to eat by mouth anymore!

    I hope it's just a very quick phase for Sophie. And that syringe in the mouth isn't such a terrible thing. I've fed Max like that his whole life to give him food, and also just to give him tastes.

  3. That's A LOT to deal with.
    I think you should like on your back and drink a gin and tonic from a zippy cup. God knows I would. Sending love to you and to Sophie as always.

  4. In the same vein as what Denise said- do you still have that bottle of vodka in the freezer?
    You've gotten your daughter to drink liquids- a most primal thing- and now it is time to be reassured that you have, for this moment, done what you could and what needed to be done.
    And to relax a little, Tiger Mother.

  5. Is there a term for PTSD when it's not 'post'? On-going traumatic stress disorder?

  6. Yup, that's how we do it.... blessings to you girls.

  7. Maybe this is weird... maybe this is a stupid thing to say... but maybe she just doesn't know.

    I mean, my son just had a freak out because we've been messing with his PEG dose. He only has bowel sensation when he's constipated, so we've been letting him get constipated so that we can work on bowel training, and then we've been letting him choose when to take his PEG dose in the morning. So when stuff loosened up, he began losing sensation again. But this came for the first time after his seizures had calmed down and he actually noticed such things, and it terrified him, but he didn't know how to express it. He didn't know how to say, "hey, that feeling that I just had that I don't have anymore? Why did it go away and will I ever get it back?" And then he got it back.

    Maybe Sophie is like... "hey, what's this new feeling? Where was it? Is it going to go away, and will it come back? Why does my throat have feels?"

    Good luck. <3 <3 <3

  8. Carlie goes on hunger strikes too. Usually when she doesn't feel well (GI issues, a cold, etc). sometimes it's random. It's always unsettling... :(

  9. Sending love and light.

    And totally understanding the niggling feeling that your discomfort might be out of proportion, but then again...


  10. The "not knowing" is so hard to bear. I hope that you can rest from it somewhat, now that you have written it out. I can tell from the comments above that you are in the company of those who understand, who have parallel experience, and I hope that their words bring comfort to you. Sending love to you and Sophie.

  11. It's hard to be "in the moment" when the future has so many shadows in it.

  12. It's hard to be "in the moment" when the future has so many shadows in it.

  13. It might just be a bad season for seizures. I don't know. Love to you both and your adorable family.



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