Wednesday, January 30, 2013

Third Tri-monster

You guys. YOU GUISE! I was nominated for a Sheenazing Award for Funniest Blog!





I'm totally not buying it -- surely I was nominated as some kind of cruel joke, seeing as I'm up against Calah Alexander and Simcha Fischer, outstanding writers who routinely make me pee myself with laughter. But if you could make the clicky on this link and vote for "wifeytini" in the first category, I would be forever grateful.



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In less exciting news, I'm in the third trimester, and I'm starting to feel like Precious. And to be perfectly honest, I haven't really been wanting to update this blog. Between writing about my grandpap dying and Henry's impending birth, I'm starting to think that every post I write has this woe-is-me vibe, and I don't want to give the impression that I'm drowning in grief over having a handicapped kid. I'm really not. I don't know if it's denial, zoloft, the prayers that have been covering our family, or some combination of all three, but I feel so much peace about this little boy. Most of the time.

Truthfully though, there isn't much to update about, and while we both feel strangely peaceful about Henry's prognosis, we're still cycling through the same old stages of grief, guilt, terror, optimism, and excitement. I'm ready to be done with the "wait-and-see" game and just dive into it, already, because anticipation is the worst. He could be mostly fully functional or he could be completely paralyzed and cognitively delayed. Or he could not survive his spinal surgery at all. Either way, I'm sick of waiting. I just want to meet this little guy and get to work on nurturing him to his fullest potential. In moments of excitement and optimism, I think of this quote by St. Joan of Arc and I feel PUMPED: "I am not afraid. God is with me, and I was born for this." Fuck yes, Joan. That's how I feel about Henry. There are definitely times when I'm sick with worry, but mostly I just want Henry to get here so we can start getting to know our boy and start kicking Spina Bifida's ass. This is the baby I was given, and if he has to use a wheelchair, or he needs a one-on-one, or he needs special occupational therapy -- well, are those really that horrible? It's scary to think that I'll probably have to catheterize a newborn ... but once I learn how to do it, won't it just become a normal part of life? Won't things like loading up a wheelchair in our car and driving to different specialists just become totally commonplace after a while? That takes the sting of his disability away, for me at least, for the most part -- knowing that waiting is the hardest part. Someday soon it won't even be that scary, it'll just be totally normal. 

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I'm finally at the point in pregnancy (32 weeks) where I can start looking forward to just being done already. It's easy to forget, but pregnancy lasts a long-ass time. We've been anticipating this baby since JULY - basically forever ago. As much as I dread our NICU stay and my c-section, I am, however, completely ready to stop craving milk every single second of the day. And wear normal-sized shirts. And tie my shoes without getting winded. And drink wine. And beer. And spirits. And wine.

My thoughts, at every waking moment

And in addition to not carrying around 40 extra pounds and DRINKING ALL THE BEER, there's also going to be this tiny little person with a round, smooshy little face who I'm going to completely fall in love with, and I can't help but be really, really excited to finally meet him. Surprisingly, I kind of miss having a newborn. Then I remember that all I have to do to re-create the newborn stage is  douse myself in milk, light my nipples on fire, and have someone punt me in the crotch. Not at all like those newborn stock photos you can find on any random photographer's website:


That's sweet but no seriously you'll never sleep again

It's more like this, if these things were honest:


I had way too much fun photoshopping this. 


I'm starting to think that newborns are only something you can appreciate in retrospect.


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Rhogam. So it turns out I don't need a rhogam shot and I've never needed it. One of my first visits with my initial OB (my very first OB that I ended up firing, not the one that I have now and love), she insisted I get a rhogam shot because of the possibility baby June could be born with negative-type blood, and I could miscarry her since I had positive-type blood and so did Lou. At the time I thought nothing of it, but it turns out she made me get the rhogam shot because she wasn't sure if Lou was really the father of my baby. She told us as much before she gave us the shot, but I thought surely there was another reason she wasn't telling me. When I relayed to Henry's Maternal Fetal Medicine specialist that my last OB insisted on a rhogam shot, he raised his eyebrows at me.

Doctor: "Don't you have negative-type blood?"
Me: "Yeah, I'm O negative."
Doc: "Mmmm." [to Lou] "And what's your blood type?"
Lou: "AB negative."
Doc: "Well, then you don't need rhogam. It's impossible to have a baby with positive-type blood if both the parents are negative."
Me: But ... shouldn't I have it anyway? I had to get it last time because my OB said she couldn't prove the paternity of the baby, so it's better to be safe than sorry.
Doc: ...
Me: No?

So I guess I totally don't need rhogam and my other OB sucked. I thought there must have been some other reason she wasn't mentioning that I should take advantage of a rhogam shot, but apparently not. Don't two negatives equal a positive, or something? Can't a baby, like, inherit negative blood from somewhere else in the family? Does blood work like that?




Math. Science. Logic. They're not my strong suit.


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Lately I've been following the story of this family, whose eighth child, Dominic, was born with encephalocele and just successfully underwent major facial reconstruction surgery. Dominic's miraculous story was featured in the Boston Globe yesterday, and oooh lawd. The comments. THE COMMENTS YOU GUYS. Someone actually called this boy an "error of nature." LORD JESUS HELP ME. Someone actually wondered why one tiny boy deserves so much medical attention when the majority of the country can't get access to "basic" health insurance. "Who pays for this?" one commenter asks angrily. "All the other folks on the same insurance plan who have to foot the outrageous bill for this kid."



Dudes. Exactly what do you think health insurance is? THAT IS EXACTLY HOW INSURANCE IS SUPPOSED TO WORK. You're sick, you get treatment. You need life-saving surgery, you get it. The cost is leveraged. This is a health insurance success story. But apparently it's some miscarriage of justice when it actually works in favor of a sick little boy who would otherwise die without it. Apparently, according to these commentators, this is a tragedy which should have been "faced" (read: aborted) and the family should have "moved on."



"Honey, just take care of it. Then in a few years you can try again and have a real baby." 

Between my pregnancy brain and my four hours of sleep, I can't form a super-rational argument as to why exactly I think this line of thinking is barbaric, able-ist, and wrong, so I'm just gonna give it a big "AW HELLLL NO" and resolve that much harder to fighting for my own little "error of nature" who also needs expensive neonatal surgery, and who I'm sure these coldly utilitarian dickwads think should have just been tossed in the trash. I'm going to show these eugenic-loving assbutts that a life with a disability can still be a life of purpose and joy. Henry is here, and he's here to stay. If anyone has a problem with that, you're gonna have to go head-to-head with one extremely pissed off mama bear, and I promise it won't be pretty.





Thank God -- THANK GOD -- our families have been nothing but supportive of us, and one hundred percent welcoming of baby Henry. The joy and love that they've expressed to us over this little boy is truly proof that good exists in this world, and that God has sent us guardian angels in the form of our friends and family members. Every prayer, every kind word, every card -- we have felt it. And we are so grateful for it. And, frankly, it's what renews my will to live after reading the drivel of these awful, awful commentators.

/rant. Someone is standing in front of me pointing to her diaper, so duty calls. Mama out.

6 comments:

  1. Doesn't June know how to change her own diaper yet? Shameful, simply shameful. lol

    Sarah, you're the tops!

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  2. Let me know if insurance gives you crap when Henry comes. Having Daniel has taught me how to bitch-slap insurance companies, Medicaid, and the SSA when they screw up.

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  3. I am being glared at right now by my 8 year old whom I just woke up out of a snore with deep belly laughter that I could not suppress. I think that the word love is tragically overused and misused in our world today, but I'm just going to go for it here and say that I LOVE your blog! I've been scrolling through the list of bloggers from the Sheenazing awards, and yours is BY FAR one of my favorites! Thank you for your awesome honesty. And, God bless Mr. Henry (we have a henry too - one of our 5 boys), he is going to be one amazing little man. We will keep you in our prayers - and I do mean that! - Susan www.solesearchingmamma.com

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  4. I often think those people (much like the ones ranting and raving that a little boy "gets" life-saving surgery while others don't get crap) have "taken care of" their own "problems"...meaning, they've aborted their own "defective" babies on the advice of their doctor, spouse, family, etc.etc.etc. I often think they're rip roaring mad when they see others give their children life, when they didn't, and so they say the most insulting, culture-of-death things. If Guilt could have a face, it would be theirs.

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  5. Hope you can keep all of us lurkers updated. You don't know me from Adam, but I have been praying twice per day for Henry and for all of your family. May God bless you and all your family. I would bet my left arm there are a lot of me out there praying very hard for the best possible outcome for all of you.

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