The Angel and Screamy McScreampants

Oh, the Angel. How angelic he is. He casts a spell of amnesia thick as fog. He is sleeping right now in the Boba wrap against my chest as I type! I have thoughts like, This is great, this is perfect, I’ll be able to write again! I will always put him in this wrap, and it will always work out just like this! Totally forgetting how just yesterday the sound of my clicking fingers really annoyed him and made him cry (this has happened before–he’s snoozing away, and I start typing, and he begins to stir in annoyance. I try typing lightly, lightly…). The Angel was so angelic and fascinated at the mall the other day with me and DH, but Screamy McScreampants was completely annoyed and overwhelmed by that same mall yesterday and did his red-faced, real-tears-streaming screamypants the whole time. I thought I might try to go mall-walking—as much as I don’t like malls—for exercise, as it is winter wonderland out there and I am going stir crazy. But Mr. McS had different plans.

Is it too young for mischief? He’s only two months old. But I could swear that sometimes when Screamy comes out, and I pick him up, he gives me an ornrey smile, putting those little hands up to his mouth and looking at me out of the top of his eyes. Other times, he seems truly traumatized, like he just got lost deep in Screamypants Land and is deeply upset and maybe kind of scared.

In any case, he is definitely becoming more and more of what we think of as a person. The other day, I was chatting with him and I said, “I feel like I have something in my teeth.” I sucked my teeth, and he thought this was hilarious. He chuckled big! Three or four times. And gave me that open-mouthed grin that contains a purity I’d forgotten existed.

I also have been giving him mini-concerts with my guitar and singing. He watches my hand strum. I hope he can play guitar, or some instrument of his choosing, some day. I don’t think I mentioned yet (?) that one of his hands is significantly smaller than the other. It’s the microtia-ear hand. That little hand goes up to that little ear all the time, especially during sleep. I think I mentioned that my theory is that they are smaller due to positioning in the womb, pressure.

I’m very glad that he is good-looking, not just because it’s nice to have a cute kid, but because he’s going to have all of these extra challenges in life based on noticeable physical difference. We have no idea how these two physical aberrations are going to play out in his life, but I do know that I need to be strong for him, be optimistic, and be his guide.

Yes, it makes me very sad to think of teasing, bullying—because I have to be realistic, he will definitely encounter some of that. And it makes me feel anxious to think he might have trouble with language acquisition, or with picking up objects, playing instruments, sports, and so on. But there is just no way to know what is going to happen, and it does him a grave disservice to expect the worst.

By the way, Paul Stanley of KISS has microtia of the ear! How awesome is that. I mean, not for him, but for ST. (My brother and cousin were huge KISS fans as kids, and I know all of the words of “Beth” by heart.)

Trying to get out the door today. Just to pick up some lunch and coffee. It’s never easy, but I keep trying to force myself. Being snowed in for three days straight did a number on my noggin. That plus sleep deprivation. ST had a couple of days where he went back to an earlier feeding pattern—even closer together feedings than two hours. It was tough. Now he seems to be back on board with the 2 to 2 and a half average. I can’t imagine four hours. Four hours would be nirvana. It has happened once.

Okay, little baby is yowling like a kitty, gotta git…

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  1. I hope yall got out! And I fear those nights when she’s eating more frequently! I know daycare is prolly gonna cause an onset of such craziness. Is ST hand otherwise normal? I wonder if it won’t catch up now he has more room. But if not, he will have all the tools to adjust because you are such incredible parents! Do you like the halo sleep sack? I almost got one cause the swaddle fight was like out of control. But we have kind of figured out the miracle blanket. I just can’t wait not to swaddle!

    • we made it to the cafe. but he, um, didn’t *prefer* it at that particular time, ahem. so home we went. yes, his hand is otherwise normal, hurray! and it is growing. we are hoping it will catch up, but there is a little bit of webbing that is making some of the fingers a tiny bit bent…we’ll have to consult a specialist and see about correcting the webbing with surgery eventually. do i like the halo sleep sack…oh oh “like” is not the word. love, infatuation, respect—now those are the words i have for the halo. the fleece kind. we strip him down to his diaper and wrap him in the fleece halo sleep sack. i highly recommend. and it is so much easier than the miracle blanket or regular blankets, and plus it was designed by a couple whose child died of SIDS (horrible) and bends in such a way around the baby that they will not suffocate if it happens to go up near their mouth and nose.

  2. Ok I think we should hook our two up online when they get older because my Fiona has a thumb that doesn’t bend at the knuckle joint along with her little ear. It’s another part of her condition. Might be good to have someone to chat to with similar stuff going on. My biggest worry with that one is that she won’t be able to play a musical instrument. My DH was quick to remind me of the one armed drummer in Def Leppard when I brought that up to him.

    • I agree. What are the chances of these similarities? Admission: I just had a totally Hollywood-movie fantasy of them becoming great friends. By the way, your posts haven’t been showing up in my feed so I’m going to fix that…it has been ages since I’ve checked in….
      I forgot that about the drummer! Goes to show that when the drive is strong enough, anything is possible!

  3. Oh, babies. Like tiny drunks with schizophrenia.

  4. Julia

     /  February 1, 2015

    We call our little one the Tiny Dictator…sounds like ST is too. He makes the plans and calls all of the shots.

    Regarding the possibility of teasing- I truly believe that some of the best people that I know have been dealt some sort of challenge in their life and they have learned to thrive along side that challenge. I truly think that you three are up for the challenge. You already sound like the best parents, and he is so precious…and yes, it doesn’t hurt that he is so darn cute! I just know deep in my bones that he is going to thrive in life. I see your little ST developing into the most wonderful, confident, talented and empathetic man.

    • Wow, thank you from my heart for this. I work hard to have the best attitude possible about his challenges, but I’ve had middle-of-the-night cries, imagining him being hurt by others’ words or looks, imagining him crying because he feels unliked, different. All of those nice things you say about our parenting and about your vision of him for the future make me want to hug you. He IS gonna be one awesome little guy. I’ve been thinking a lot lately about what a great male role model DH is—this kid is so lucky to have him as a dad, particularly when it comes to these challenges. xo!!!

  5. Loved this update though it was bittersweet (bullying sucks. Can’t everyone just love each other). Good for you for getting out! Even 9 months in i still get paralyzed by all the gear that we stay in far more than we should…


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