Quick Takes

1. I misplaced my zoloft the other week and just haven’t been able to locate it since. So pretty much I haven’t taken zoloft in about five days, and boy is that a mistake if you have an anxiety disorder. The first two days or so you feel fine. You start to think wow, I don’t think I even need this stuff anymore! Later, zoloft! And then by the fifth day you start repeating snippets of movie dialogue in your head, just because it feels oddly comforting. And then you start not wanting to leave the house because, like, anything could happen outside, and you might overheat and die of heatstroke if you stay out in the humidity too long, and so why not just hang out inside? All day? In the basement? Under a blanket? Where nothing will harm you and you won’t have to talk to anyone? Because that sounds normal, right? And before you know it all you want to do is watch The Waltons for six hours while you  eat cheerios and nurse the baby and cry, and then you find yourself at the local Walgreens in the middle of the afternoon buying an ovulation predictor kit because you’ve started to become weirdly obsessively paranoid that you’re just going to spontaneously ovulate and conceive twins with spina bifida so you go home and chug three cans of Lipton’s and pee on thirty test sticks because I JUST CAN’T HAVE TWO MORE BABIES WITH SPINA BIFIDA RIGHT NOW, GOD, I JUST CAN’T.

because feelings are exhausting.

So, note to self — call the pharmacy tomorrow.
Totally not pregnant, by the way.

2. Doctor’s appointments. We have them. We see a neurosurgeon. A neurologist. A plastic surgeon. A physical therapist. A developmental therapist. A care coordinator. A urologist. A nephrologist. An orthopedist. And when I asked the neurologist during our visit last Friday a specific question involving his vision, she said she would have to refer me to an optometrist.

alas, she was not.

One frustrating thing about Spina Bifida is that there’s no central “Spina Bifida doctor.” Man, would that be great. With typically developed children, you go to a pediatrician who just specializes in general kid ailments and whatnot. Fever? Pediatrician. Learning delay? Pediatrician. Vaccines? Pediatrician. Random question? Pediatrician. Just call your pediatrician! For whatever! With Henry, he sees fifty different doctors who all specialize in very, very, very specific fields. Before having Henry I was under the impression that the neurologist and the neurosurgeon were kind of the same thing. NOT SO. I still don’t quite understand the difference between the neurosurgeon and the neurologist, but I do know that if I think his shunt is malfunctioning, I call one doctor, and if I want to ask how his shunt will affect his learning capability, I call the other one.

It’s disconcerting, after a while, to realize that you actually know more about SB than your own pediatrician does, and you got your degree from Google University. Everyone tells you before the baby is born (when you’re expecting a baby with special needs) that you’re going to become your child’s own expert. And it’s one thing to know that on an intellectual level, but there’s something about seeing your pediatrician shrug when you ask them pressing questions about hydrocephalus or Ponsetti casting.

the look your pediatrician gives you

I honestly have to bite my tongue to keep form laughing when I remember the things I used to worry about, with June: “What’s that weird indentation on her head?!” (Answer: her soft spot.) “What’s that weird piece of skin on her ear?!” (Answer: A skin tag.) “JUNE ONLY NURSED ONCE LAST NIGHT. CANCER?” (Answer: No.) At least with my typically-developing child, the doctors could just smile and pat me on the head and send me on my way. Silly first time mom! It was patronizing, sure … but it was comforting, too.

Now my anxiety has a little bit of credence to it, and frankly, I wish it didn’t. Now when I get weirdly paranoid about Henry sleeping too much, it could be nothing … or it could be a shunt malfunction. Big stakes. And as opposed to our pediatrician, who lives literally three minutes from our house, I would need to call our neurosurgeon if I suspected something was wrong with Henry’s shunt. And he practices one hour from our house. And our co-pay is $30. And I don’t have a car during the day. So like I said — big stakes.

3. One upside to having so many doctor appointments all over the damn Chicagoland area is that I’m getting good practice driving on the highway, something I’ve never done by myself in all my twenty five years until just last week. Up until recently, whenever I’d merge onto the highway it would go something like this:

I’m scared of driving, and everyone I know who drives with me is similarly terrified, and rightly so. If you knew me at all in high school, you know that I was a notoriously shitty driver and came very close to failing my driver’s ed class, and at one point I even made a left turn into the WRONG LANE into ONCOMING TRAFFIC and screamed and covered my face with my hands. Which is what I like to call defensive driving. Or whatever is the opposite of that.

I don’t know how I graduated high school. At least in college you can take courses that pertain to what you’re actually good at. In high school, there were so many subjects I had to take that I just did not understand and did not excel in. I didn’t understand most subjects, come to think of it. Except for English, which was my saving grace. I was great at English. And Spanish, I guess. And Oral Comm. And everything else, well…not so much. When I was good, I was really, really good, and when I was bad…people almost died.

pretty certain I actually said this at one point

4. My baby is turning two this month. I’m not really even ready to fully process how quickly my sweet girl is growing up. She’s got 16 years left with mommy before she grows up and leaves me forever, and I can’t even think about it or else I’ll start to ugly-cry:

way worse than this

Sunrise, sunset, am I right?

By the way, have you ever really listened to the lyrics from that song? From Fiddler on the Roof? Because, if you have children, just don’t. That song wrecks me. Parenthood has ruined everything. We played that song at my wedding at one point during the ceremony and I got a kick out of how many adults were dabbing at their eyes and sniffling loudly. Pussies. NOW I AM THE PUSSY. My little sweet girl is so big. And how is this the same child that used to be the size of a bread loaf? And what? And how? How does that happen? How does that happen so fast? And how do I make it stop?

5. We’ve all been battling really awful colds in the Wisniewski household lately. I slept almost the entire day on Saturday and only roused from hibernation when I had to nurse Henry. Henry now has the same cold I’ve got, and I’m trying to stay calm and assure myself that the reason he’s sleeping so much during the day lately is indeed because of his cold and not because his shunt malfunctioned. Half of parenthood is wishing your kid would sleep, and the other half is wanting him to wake up because you miss him and want to play. Or you’re aching and you need to nurse. Or you’re terrified that his hydrocephalus is going to eat into his brain. Whichever. Fingers crossed that I’m just being a paranoid mommy and nothing is actually wrong.

At least he’s sleeping through the night, anyway.

6. There is a little brown nugget on my floor that I’m pretty sure is a turd. I’m just going to ignore it until it’s time to vacuum. Good plan.

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8 thoughts on “Quick Takes

  1. Is there any type of doctor (geneticist?) that specializes in spina bifida? My daughter has Williams syndrome and has a thousand doctors but there is one geneticist in the Boston area who happens to be an expert in Williams syndrome. She is a Godsend when it comes to the BIG PICTURE and putting the pieces together.

  2. I stumbled here through some weird internet rabbit hole and I want to tell you that you're doing a great job with little Henry. My daughter was born with SB sixteen months ago and I've been told "you'll definitely know" when her shunt isn't working. Having said that, Liv's shunt malfunctioned at three months old and the only sign was that her head got so big it looked like a light bulb, which *I guess* should have been my first clue. Anyway, I enjoyed reading through your blog and I think you are hilarious!

  3. I discovered your blog, and read through the whole of it, in January. From then on, I checked, and re-checked for months. Of course, the silence from February on could have meant anything. Yet today (during a crazy time that does not even allow adequate time for blog-reading procrastination) I stumbled back on you blog through a link from Conversiondiary, and you pretty much made my day! How lovely, lovely, it is to read how everything is going so much better than one would have thought at the initial diagnosis. I am so happy for you!While I am unmarried, and therefore not (yet) in a place to encounter that sort of harrowing challenges, I must tell you that you have been probably the best inspiration for me, in this department, in the Catholic blogosphere. I am not that young anymore, and if I ever will have a child, it will probably be more at a risk of facing congenial disabilities than average, a thing that does scare me, as much as I believe in the worth of every human life. Your account, keeping it so real, has helped me a lot in seeing that God will help us even in those kind of situations and may make us happy in circumstances we would have thought would be really awful.Keep on blogging and being an inspiration for us! And put on more of those cute photos of Henry!

  4. Adopted our son in January (we have 4 bio kids too, so this ain't our first rodeo, as my kids like to say.). He was supposed to have a cyst in the right side of his brain. An easily correctable, just reroute the neurons around the damage with physical therapy CYST. Yeeeeah. Turns out he had a MASSIVE stroke sometime around his birth that took out almost the entire right side of his brain. Allllll dead. We found this out after the adoption was finalized. Which was shortly after finding out I was pregnant with bio kid #4. I was all, "gimme the wheel, Jesus, that's a freaking Mack truck!" Little boy had NINE specialists to go through so we could pinpoint a cause (NOPE. No reason for the stroke.) and put together a treatment plan. (physical and occupational therapy, plus special needs classroom…which is exactly the same plan as when we thought he had a cyst.) So we've pared the specialists down to 2 now, plus the physical therapists, fitted him up with some bitchin hardware (Batman leg brace FTW, yo!!) and moved on with our lives into something resembling normal. 🙂 I guess the point of all that was that I love your blog and can really REALLY relate to what you're going through.

  5. Hmm is anyone else experiencing problems with the pictures on this blog
    loading? I’m trying to find out if its a problem on my end
    or if it’s the blog. Any feed-back would be greatly appreciated.

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