CLEVER /  by Micaela

It was an absolutely stunning day here in Brooklyn.  Cecelia and I tried to keep the kids outside as much as possible, which seemed remarkably easy to do since we didn't have to spend any time safeguarding the kids from the elements. 


We took the kids to the park and on the way back Cecelia gave Roan her water bottle to play with and he did this:
 

Roan started assuming this loungy stance with his ankles crossed when he was only a few months old. This is the first time we noticed:

ADDENDUM /  by Micaela

I don't know how this one previously escaped me but I just found another of Sam's wackadoo outfits for Lula.  I added it to the original post as well.  Enjoy.
Vivien Westwood meets Eddie Munster

SWINGING /  by Micaela

Roan in the new swing that Cecelia and Jason picked up for the kids in Costa Rica and Lula doing PT with her therapist Paul in the back yard.

DONK /  by Micaela

For this shiner right here, Roan can thank his Grandma Susan, who forgot to strap him into the stroller.
My mom's parenting style is classic 1970's in nature, a method my landlady describes as "benign neglect".  She sneaks off during naptime to smoke cigarettes. She rolls her eyes at my repeated requests not to give Roan cranberry juice cocktail or put him to bed with a bottle, things that any self respecting 1970's parent didn't think twice about. I am vetoing my own childhood! Given that none of us wore seat belts until about 1982 or had much in the way of childproofing it's a wonder that any of us are alive, but here we are.

 On the other hand, she is usually the one to first recognize when Roan is ready to try something new like finger food or a bigger bathtub. And he's an intrepid and nimble kid so the two of them make a dynamic pair.

We may just need to buy Roan a helmet.



WORK ETHIC /  by Micaela

Yesterday was my last day at work, which I say with trepidation. I've been freelancing at Cosmo part time for a few months now, and I am not exaggerating when I say that I owe any sanity I have had to the respite of work.

Originally I honestly couldn't see how my brain, awash in feeding schedules and doctors appointments, would function when asked to work with other adults.  That is, until my first day back when I was able to get up from my desk, walk to the bathroom, and pee without first making sure no one would cry/fall/puke/choke in my absence. How liberating!

I now think of the perennial question, "How do you balance work and family?" as contrary to it's own point. The real question, I think, should be to stay-at-home parents, "How do you maintain your sanity without work and family to balance each other out"?

Nothing that occurs in an average day at home with the kids is particularly difficult, but the endless, relentless, sameness to every day and night for weeks and months on end is a serious test of endurance. A marathon is hard, but it's over in a couple of hours if you're fast. Parenting is akin to a walkathon around a track inside a public school gymnasium that lasts for 10 months straight. I am amazed at how everything is simultaneously mundane and crucial nearly all the time.


To wit, here is a sample of what one days schedule is like around here:

7:00am Roan wakes up
7:30am Lula meds
7:30am Lula Nebulizer treatment
8:00am Roan breakfast
8:00am Lula G-tube feeding/feeding therapy
9:00am Night nurse leaves
10:30am Lula meds
10:30am Roan bottle/nap
11:00am Lula 1 hr with speech/feeding therapist
11:00am Lula G-tube feeding
12:00pm Roan lunch
2:00pm Lula G-tube feeding/feeding therapy
3:00pm Walk to the park, errands, etc
4:00pm Lula 1hr with physical therapist
4:30pm Lula meds
5:00pm Lula G-tube feeding/feeding therapy
5:00pm Dinner for Roan
6:00pm Baths
7:00pm Roan to bed
7:30pm Nebulizer treatment for Lula
8:00pm Lula G-tube feeding
10:30pm Lula meds
11:00pm Night nurse arrives
11:00pm Lula G-tube feeding
1:30am Lula meds
2:00am Lula G-tube feeding
5:00am Lula G-tube feeding

I should note that I was working at Cosmo part time and my bosses and colleagues were uncommonly supportive of my other life. My boss has twins and could wholeheartedly empathize with me.  

But even the most insane of photo shoot production catastrophies have hardly prepared me for the schedule of parenting these two puppies.  If I want another vacation I think I will just have to find another job.

FASHION VICTIM /  by Micaela

For a guy who has worn pretty much the same uniform since I met him in 1997 (mildly ironic or graphic band t-shirt, zip up hoodie, slouchy jeans, clumpy trainers) Sam is pretty eclectic when it comes to dressing Lula. He sends these photos to me, tauntingly, at work. I suppose he probably didn't get to dress up dolls as a kid, and we won't have too long to put them in whatever getup he chooses without protests from the kids so he might as well enjoy it while he can.
Vivien Westwood meets Eddie Munster
That "Ms." t-shirt was mine. SO seventies, no?
Note the cable ties on her ankles to keep her booties on
The little CBGBs top is from when my sister worked there before it closed
Punk Rock Princess. Her hairstyle reminded me of someone...
...oh yes

HOPEFUL /  by Micaela

This is Gracie's favorite new spot in the house. So far stray dinner droppings are the only perk that Gracie can see to having the kids around.

A FRIEND IN DEED /  by Micaela

I have always been incredibly lucky with friends. I mean really, really lucky.  And since birthing twins has put me under a de facto house arrest, I have been pretty much dependent on them coming to me.

We have had the most remarkable trail of friends and family come to the house to see the babies and feed us, like an endless parade of the Three Wise Men bearing gifts of baked goods, ice cream, and entire three course meals. I blame the baby weight on the steady supply of carbs being brought my house rather than the actual babies.

There have been a couple of people, however, who have literally had to scrape my brain up off the floor and pour it back into my skull, and then feed me coffee and Oreos, and they are Cecelia and Aggie.  They have hung out in multiple hospital rooms, learned how to flush a G-tube, laughed at my ridiculous breast pumping bra, and listened to the endless minutae of my life with limitless patience.  I never go more than a week without at least one of them coming to visit.

Truer friends I could never have asked for. Truly.

Cecelia and Lula doing physical therapy

Aggie doing some weight lifting

A WALK IN THE PARK /  by Micaela

Yesterdays thunder and lightning storms gave way to a fantastically brisk spring day today.  The 4 of us went for a walk in the park and it was glorious.  Lula still freaks out over any gust of wind but I've figured out that I can calm her down by keeping a scarf wrapped around her and using it to shield the wind.

BELLEVUE /  by Micaela

Lula went for a follow up with orthopedics yesterday. A scan in January indicated the possibility of hip displaysia, so we kept her little legs in froggy position as much as possible and the new scan came back A-Ok. The orthopedist was very happy with how much she has chunked up and said that her thigh muscles look strong, which are the most important ones for walking. She may need to wear a little boot on her left foot when she starts trying to walk, but overall it was good news. Almost.

Except there was one sentence in 3 hours of being there that has superseded everything else. Betty Keating, her primary care nurse practitioner said, as we discussed her progress, "well you know, you don't need an MRI to see that her brain isn't developing as it should be."

Crushed.

Betty is amazing and the toughest broad on the block and she doesn't mince her words, but I don't do well with open ended statements like that. Sam has repeatedly mocked me for saying things like "I don't want problems, I want solutions!" If you're not giving me good news you'd better follow up your bad news with a plan of action because my brain doesn't tolerate open ended catastrophe (whose does though?)

But that was it. "You don't need an MRI to see that her brain isn't developing as it should". I am nothing if not a pragmatist, and I have held the blanket insistence of others that "she's going to be fine!" at arms length, knowing that these declarations aren't made because they are experts or soothsayers but because they generally want to end the conversation about my sick baby. But I don't know what to do with a statement like that. Moments like that make fussing over her infinitesimal progress (she can sleep on her tummy now! She likes being carried in the Baby Bjorn! She maintains eye contact for 3 or more seconds!) seem delusional and trite.

Afterwards Sam and I went to see Macbeth at BAM- his birthday present which we had to start orchestrating in February. I kept watching the performers and wondering, "were any of these people born with hypotonia? Did any of them not smile or have weak vocal chords?" Could Lady Macbeth have been so plotting and manic if she had been born with neurological issues? Maybe that's why she was so nuts!

I look at people constantly on the subway, or coming and going at the cafeteria at work. I watch for a sign that they were once like Lula. I never see those kids, the ones in the waiting room with us at Bellevue, listless limbs and empty eyes, drooling in elaborate wheelchairs- I never ever see them in the cafeteria. I don't see them playing Lady Macbeth at BAM. Is Lula going to be as invisible as all of them?