without a definite route

it took some time…

on March 24, 2009

a lot has happened since i last wrote. a lot a lot. life altering scary-ass a lot. and i’ve wanted to write about it. but i couldn’t do it. i was afraid that writing about The Scary would give it a voice so i’ve let a couple months go by without a word.

i thought maybe i could ignore The Scary and write about other very important topics. things like josh & my conversation about who the best male rock singers in history are (josh had to make two separate lists, one for regular boys and the other for metal boys). things like the struggle i’m having with loving nursing, but wanting to free my boobs from the peskiness of pumping. things like my new love for pink wines (to be clear, rose not zinfandel). things like 24, battlestar gallactica and how lame the new cycle of america’s next top model is. and things like jasper starting to walk and say the word “down.” okay, those last two shouldn’t be uttered in the same breath as a reference to david lee roth and freddie mercury, but my point is i’ve been blocked because of The Scary. and being blocked by The Scary makes it all the more scarier. so i shall jump in and write about it. and get it out of the way.

emmit had a seizure in january. it sucked. at the hospital, the doctors asked, “has his head always been this big?” i wanted to point to josh and my heads, like, “you think his head is big? i’ll show you big heads!” boy comes by the big head honestly is all i’m saying. after many tests, including an EEG and a CT scan, the docs told us that emmit has hydrocephalus and something called a dandy walker malformation (DWM) of his brain, which is a rare congenital malformation that involves the cerebellum and the fourth ventricle. my beautiful, silly, funny, loving, evil genius boy has a brain malformation. what on earth does a mama do after being told that?

the answer to that question, actually, is bake. then eat baked goods until they are gone. then bake again. in some cases, baking can happen before the previous baked item is gone. cakes, cookies, cupcakes, olive bread, boules. lather. rinse. repeat.

i am generally a researcher, but i’ve had to stay away from the internets on this one. the only time i poked around looking at DWM, i came across the phrases “poor intellectual development” and “sudden unexpected death.” i decided to only let the doctors tell me what i need to know. trouble is, we couldn’t get appointments until two whole months after the seizure. that’s a lot of time to sit with “sudden unexpected death” tooling around in my head. but it has also been enough time for my mama-confidence to grow in terms of making sure emmit is a person to the docs and not just a patient. it has been the right amount of time to help me remember that emmit is still emmit and he’s going to be okay and to stop sleeping on the floor next to his bed every night for fear that he would have another seizure, which shouldn’t happen because he’s on anti-seizure meds. strangely, the seizure was kind of a good thing. as it turns out, emmit’s DWM and hydrocephalus are the cause of his developmental delays. without the seizure, we wouldn’t have known to look at his brain. um…thanks seizure?

the most important thing to mention at this point is that emmit is doing great. wonderful, in fact. lately, his speech has taken huge strides. he’s making more full-on sentences and picking up vocabulary words like crazy. he’s a madman at the park, jumping and climbing and sliding and swinging. he’s just emmit. there is a huge spectrum of people with DWM (dandies?). some are very seriously sick. and some don’t know they have it until they are adults and something else brings it to the light. we already know, based on how healthy he is otherwise, that he’s on the better-case side of the spectrum. knowing what we face gives us the power to help him reach his potential.

tomorrow, i’m going to write about the MRI and doctor appointment we finally had last week. wow. it’s kind of great to write about it. i’d like to kick myself for being silly about The Scary, but i also trust that it feels good to write about it now because now is the right time.


2 responses to “it took some time…

  1. anne says:

    thanks for writing this.

  2. […] March 25, 2009 this is the second post about The Scary events of emmit having a seizure in january and us learning that he has a brain malformation. the first part is here. […]

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