Friday, May 24, 2013

Fight or Flight (but mostly flight)

I thought Henry's shunt had malfunctioned the other day. While I sat on the couch cooing at Henry, June ran back and forth between our two couches, climbing over the edges and flopping down on my shoulders. One of those times, she missed, and flopped down on my lap, grazing Henry's head with her foot. Right near his shunt.

Who knew it was possible to feel so so furious at a two-year-old? I marched her right over to time out and sat down to nurse Henry, who promptly calmed down and fell asleep (obviously I thought OMG CONCUSSION but he was sleeping so peacefully I didn't want to wake him up. Mom fail). June sat in time out for a whole five minutes -- although it probably wasn't at all effective since she could see Barney on the TV from where she was sitting, and I couldn't reach the remote from where Henry and I were sitting. Double mom fail.

The next morning while we were nursing, Henry gagged. And then he gagged again. And again. I stopped feeding him and he gagged some more. For those of you who don't have a passport to Special Needs World, Henry has something called a Chiari II Malformation, where his cerebellum is pushed down into his spinal column as a result of the hydrocephalus. This, in turn, affects his breathing and coordination and his suck/swallow reflex, which is why you see some Spina Bifida kids using tracheas and feeding tubes. His hydrocephalus is under control, thanks to the shunt, but if that shunt were to malfunction, his Chiari symptoms would come roaring back. A persistently downward gaze, choking/gagging, apnea spells, and irritability are all things to watch out for as a sign of malfunction.

To illustrate. 

Long story short, Henry is totally fine. I think. He's not showing any Chiari II symptoms, and I guess the gagging was just a one-time, weird fluke. That still hasn't stopped me from eyeing his shunt suspiciously, and feeling on it every second I get, and putting a mirror under his nose while he sleeps to check for apnea. So basically, I'm still an anxious wreck. Today we're headed up to the city for another doctor's appointment -- maybe the sixth in the past two months? -- to check his kidney function and whether or not he has any muscle tone in his buttonhole. (I can't say "anus." Just ... no.) I'm not ready-to-run-out-of-the-room terrified ... but I'm still getting that panicky, nervous-diarrhea feeling.

Motherhood is fuggin terrifying. Whenever one of my kids have any kind of ailment my first reaction is "Oh, no, sorry, this is too hard. Can't do this. I gotta bail."


Especially with puke. I cannot tell you how much I hate puke. And not in a "oh it's so gross way," but in a heart-pounding, stomach churning, fight-the-urge-to-run kind of way. I've never actually been officially diagnosed with anything, but I'd bet a million, billion dollars that I have some kind of emetophobia. In fact, if I go a few days without taking Zoloft, I start having these mini-anxiety attacks when I put the kids to bed at night, wondering if they're going to wake up in the middle of the night sick. (That's always how it happens, by the way, for you non-parents reading this. They're always fine when they go to bed, and then, at 3 a.m.? Puke city.) A friend of mine once rubbed her stomach and mentioned casually that she was getting over the stomach flu, and I literally stood up and left the room in mid-conversation. Probably not normal behavior.

Part of the reason I was so upset when Henry was diagnosed with Spina Bifida was that I have what I like to call "crazy anxiety brain." Five years ago, I had to have emergency surgery when I was studying abroad in India, and that kicked off a cascade of terror that would wash over me whenever I had to deal with anything even remotely medical, even routine doctor's appointments. Getting an ultrasound, giving birth -- that was challenging enough for me, but I was handling it with zoloft and constant prayer. But then ... to get pounded with the double whammy that is medically-related PTSD and a kid with special needs that will involve approximately a bajillion doctor's appointments and surgeries to manage??? Uh...

Not cool, God.

You'd think I would hate motherhood, since children just spray puke and pee and are generally just little disasters waiting to happen. In actuality, motherhood is my vocation -- the path God has chosen for you, by which you draw closer to Him and thereby closer to heaven. It may send me fleeing from the room at times, but even the puke and the poop and the anxiety is worth it, because it will turn me into a saint. That's the idea, anyway. And I'm like, definitely getting into heaven, y'all. Because all I do when I'm around my kids is pray like crazy. Case in point:

[while cutting June some hot dogs] Please, please Jesus, don't let June choke on these. Please don't let her get pediatric cancer from all the nitrites and pig feces that are probably in here. There's probably a lot of sodium in these things, too. Oh, dear God, please don't let her get sodium poisoning and die and then let CPS take Henry away like that one Dateline special I saw that one time. Oh, please God, don't let her get food poisoning and then have me take her to the hospital and have the doctors think she has Munchausen by proxy like that one book I read. Oh, and please, please, please don't let her get salmonella, e coli, or botulism. Or autism. And please don't ever let her get molested somehow. Thanks. Amen. 

You can just go ahead and canonize me right now. Obviously.

Maybe I should talk to the doctor about getting some more Zoloft.

Or maybe I should just stop giving her hotdogs and watching Dateline.


  1. Sarah, you're a GREAT mom! Any mom who cares has the same doubts, reactions, fears, etc., as you. Don't forget, you have a great support system; people who love you and the kids (and Lou) very much. Don't be afraid to lean on us when you need it. BTW you pray great prayers.

  2. with tear in my eyes.....

  3. You are so strong! I love this post and can relate a little. Both my kids were born with something called craniosynstosis, which meant a bunch of surgeries for them as babies. Cranio is nothing compared to spina bifida, but I can definitely relate to the wanting to jump out the window part. God bless you and your family!

  4. They make nitrate free hot dogs. Not sure about pig feces free, but it's a start :)

  5. Sarah...Just stopped by your blog for the first time! I also have anxiety and emetophobia (in a big way) and I have two special needs kids (autism for us). I have a ton of medical anxiety and I freak out just for regular doctor visits. I can't tell you how many times I have been thankful that my kids have a type of special needs that, although it sucks and does require more medical visits than a typical kiddo, does not require a zillion medical specialists and procedures and equipment, etc. You are amazing. :)


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