GROSS /  by Micaela

I know you were thinking this post would be about poo given it's title, but it is not.

Anyone who knows me well knows how utterly petrified I am of large and fast moving bugs. My previous post about Cecelia's encounter with hordes of grasshoppers was ever the more apt because of my own tendency to completely freak when anything with more than 4 legs gets near me. Well, Brooklyn monsoon season has apparently drawn all the critters out of their dens, and a giant heaving waterbug made a b-line across the living room right for me today.

I have actually wondered what I would do in such a situation now that I have kids.  I am so terrified of especially waterbugs, which I can only attribute to a childhood in an old, rent controlled New York City apartment, that I can't even kill them.  Usually shrieking and arm flailing is all I can manage and I leave the killing and corpse disposal to whomever I am with.  If I am alone I am screwed.  I once slept on the living room sofa and let a large green katydid have my bedroom for the night because Sam was out of town.

But now am I not meant to be the defender of my children from all that is creepy and crawly? What would I do in such a situation?  The answer is this; not complete heroism since I still managed to avoid any mortal combat (thank you Sam) but I didn't run screaming from the room either. In that moment my brain managed a rather odd compromise between fight and flight:


Note that Lula is actually hooked up to the feeding pump, and she slept through the whole palava so I'm going to call this a success in parenting. Yes, I am kneeling on the armrest of the sofa.

THE MEANING OF NO /  by Micaela

According to Lula's speech therapist you should start saying "no" to kids around this age (11 months) but they won't fully understand the meaning of "no" until around two years of age.  I am not so sure about that.

GRANNIES AND GRANDPIES /  by Micaela

We've had the good fortune to have a relay race of grandparents here the past couple of weeks.

First my dad and stepmom came to visit. Grandpa Terry spent two full days here with me and the twins, more childcare than he's endured in the last 20 odd years. I believe he even changed a diaper or two. I've never seen him look more exhausted and happy at the same time. My stepmom Cam, who once claimed to have no interest in children under age three has been completely converted and is utterly besotted, although I am pretty sure she managed to skirt any diaper changing duties.

Then just as they were leaving Sam's mom arrived.  She giddily took Roan, a little firecracker of energy at 6:30am, so we could sleep until 9:00am every morning. She held one or another of the kids pretty much nonstop, or else she was buying them presents, cooking, or folding mountains of laundry. She tackled baths, explosive nappies, and naptime.  She even danced around the living room with the laundry basket on her head to entertain Roan. 

A couple of times my mom came over too, and I hardly had to lift a finger. Sam and I went out to dinner.  I went to the gym.  I got a manicure.  I seriously haven't been this relaxed since they were born. 

So let's hear it for grandparents! Only they would think of this kind of indentured servitude as a vacation. 

EPIPHANY /  by Micaela

My friend Cecelia told me a story years ago about going to see a soccer game in the Dominican Republic.  It was a night game and they used huge floodlights to illuminate the stadium which attracted thousands of grasshoppers.  The light made them frantic so you had to sit there with all of these fat green bugs bouncing around, kinetic as rubberbands. 

She was horrified. Normally one grasshopper landing on her would have freaked her out, and here she was being pelted with dozens of them, as was everyone else.  The Dominicans would just grab them and throw them off without noticing because they were too focused on enjoying the soccer game. Cecelia had a moment where she realized that she could either panic and manically fight off every kamakaze insect or she could try to focus on the soccer as much as possible and on the bugs as little as possible, but either way she was stuck there for the duration of the game.

Speaking with a woman at Bellevue the other day prompted me to remember this story. I was telling her about how hard everything was and how I felt trapped by the schedule and how stressed out I was about the future and what we were going to do if I ever wanted to go back to work or take a trip or buy a house or save money because I couldn't even figure out quite how I was going to survive next week!

She said something that I brushed off initially but has been brining in my brain for the past few days and has fermented into a nugget of clarity, a pickled egg of sanity if you will. She said that aside from all of Lula's many problems, and even aside from having 2 babies, twins even, being a parent is really, really hard.  That's it.

I realized that I have been attributing all of my stress, anguish, and strife to Lula's medical problems and delays with the misguided belief that if we could make her better that being a parent wouldn't feel so completely overwhelming, relentless, and daunting.  Bullshit!

If I could somehow make Lula perfectly healthy tomorrow these feelings would not go away.  I would still feel utterly suffocated by my new life and mourn the days when I could go for bike rides with friends, cook meals, have hobbies, take pictures, travel, even walk out of the house unaccompanied.  Remember how annoyed you were when you were a kid that you couldn't go anywhere by yourself without some adult monitoring you?  It's the exact same feeling for the parent. I know this is so cliche but I am kind of in mourning for my old life.

Realizing that my every bad thought and feeling does not rest on the dainty little shoulders of my baby girl is a huge relief.  For one it's not fair to her.  She is doing the best she can.  It's also not fair to me. I am doing the best I can but I am just going to have to accept this shitstorm as my life for a while and not fight the current like some manic OCD salmon on steroids.  And hopefully if I can accept some of it I can give myself more space to find the happiness in my new life.

So the moral of the story is this:  Life continually smacks you in the face with giant grasshoppers but if you pay them too much attention you will miss enjoying the game. How's that for a metaphor?

FIRST TIME SWING /  by Micaela

Here are the kids with their Grannies Sue and Joss.
We decided to try plopping Lula into a swing in the park. She seems to like it, although next time I think I'll bring a pillow to wedge in the back. Roan is an old pro at the swings by now.  It's kind of an interesting challenge to try to figure out how she can do the things that he can do.

PHOTOGRAPHING TWINS /  by Micaela

Some of you may wonder why there is a distinct lack of pictures of Roan and Lula together.  Well, let me confess.

I am a photographer.  I got my first camera at 12 years old. I went to a very expensive private art school and studied photography as my major.  I have been a photo editor for 10 years since then.  Sam was also a photo major. We first met over some negatives on a light table at the art school in Glasgow, for God's sake.

One would think that this would have prepared us to photograph our own children, but no.  In the past 11 months I have tried and failed again and again and concluded that it is impossible to get the two of them to look good in the same photo.

Never mind that I rarely have a free hand or second to even attempt photos of them together. But in the rare opportune moment I am always defeated by two uncooperative subjects.  Separately they are very photogenic, I think. Put them together and I have Sean Penn and Björk.

Think I am being a bit dramatic? Behold:
OK not bad but it only goes downhill from here
A bit serious, aren't we?
It's not long before one of them gets pissed off - usually Lula
Even the dog is dismayed
Honestly?  Now you're both going to cry?  OK let's put you on the bed...
...OK now we've reached operatic proportions of unhappiness

Not into matching outfits at all
I give up.  Grandma can have you both

HOPE /  by Micaela

Last week we went to a very informative seminar taught by a thoroughly knowledgeable and irritating man. He provided us with troves of contacts, resources, phone numbers, agencies, etc that can all provide support, people, or money of some sort for your disabled child.  Unfortunately, his style of delivery was two parts Rodney Dangerfield and one part Mr. Seidenstein, my 10th grade history teacher. It's very surreal to watch someone trying to be entertaining while telling you about the American's with Disabilities Act.  I don't recall ever before hearing a joke where the punchline was " ...he died when he was 6 years old!"

He also kept telling us how important it was to stay hopeful, that hope was more important than doctors or therapists or anything else. He kept telling inspiring stories of kids whose parents were told that they would be vegetables all their lives but who managed to learn how to eat and talk, etc.  I can appreciate how amazing these successes are, but the problem I have with hope is it's contingent on success and change, which are not things you have in the present.  Hope is an illusion, a possible future, but it doesn't do anything in regards to now. 

Truthfully, it is very hard to enjoy Lula as she is now.  She can't really express happiness, she can only express when she doesn't like something, and she doesn't like a lot. She hates cars, carseats, sitting in a chair, lying flat on her back, being changed, being bathed, the wind, the list goes on.

She is learning to like some things, however; she now likes to lie on her stomach, she likes squash and oatmeal in very small quantities, and she likes being held. All the time. But like is expressed mainly as not fussing. She doesn't smile or coo or laugh.

So my Mother's Day wish for myself is this:  Of course, I will hope that my child gets better, that she learns to hold up her head and crawl and smile and laugh and play.  I can even ambitiously hope that she outgrows all of this, although that's extremely unlikely.  More than all that, though, I hope for myself that I can find happiness and love in being Lula's mom as she is, for who she is, if none of my other hopes come true.

BLAST FROM THE PAST /  by Micaela

I have thoughts and opinions (as always) that I keep planning to blog about but, frankly, I am too damn tired tonight to form any cohesive sentences.  So I'll go for cheap thrills instead.

I took a little dip into the archive and came up with some random and obscenely cute photos of the babies.  I can't believe they were so small and squirmy.  Even Lula looks like a total porker now compared to back then.  Enjoy.
AAAAwwwwwww!

aaaWWWWWwwww!!

OMG Frog legs!

OMG orange sized head!

DOWN AND OUT /  by Micaela

Roan's newest preoccupation is chucking everything out of anything he is in.  He's the opposite of a hoarder, it's like he's obsessed with some stark Bauhaus vision he has for his surroundings and must, must rid his environs of anything that could be considered clutter.

It always looks a little disquieting. Every morning we wake up to a stuffed animal version of Jonesstown, all of his dear friends callously tossed overboard like so many sacrificial lambs (or bunnies).  It can usually buy us a few more minutes sleep, however, so we will happily clean up the massacre afterward.

JACK IN THE BOX /  by Micaela

We do a lot of chest PT on Lula, who is in an endless battle with mucus (no one really knows why, possibly a symptom of dismotility). She reminds me of something here, a Jack-in-the-box or a wind up toy of some sort. Or a marionette?  I can't put my finger on it.  Thoughts, anyone?

TEA /  by Micaela

We here on Clermont Avenue are still awash in royal wedding fever, and kept with the theme for tea (that's dinner to you yankees).

BONNET /  by Micaela

In honor of all the nuptial brouhaha today, and because it was sunny, Lula donned her best spring hat.

SPAAAHHH CASTLE /  by Micaela

Sam and I took out very first full day off together today. 

I remember my mom telling me years ago about the first time she and my dad went out together after I was born and I was 6 months old and they went to see a play but my mom kept running out to the lobby to call the sitter and I remember thinking "oh my god what lunatics - 6 months?? How could they not have gone out sooner?? What uptight first time parents, blah blah, etc etc". Yet somehow the past 10 and 1/2 months literally slipped through our fingers and even my masterful planning skills were not able to find a single day that we two could be away sans kids for more than 3 hours. 

Today, however, we spent 7 blissful hours at Spa Castle which is like a Korean Disneyland for adults. 5 floors of saunas, hot tubs, outdoor pools, steam rooms, masseuses, beauty treatments, nap rooms, big bowls of korean stew, and bubble tea. It's like being cocooned in warm air and water for the day and emerging scoured, scrubbed, soothed, and amazingly relaxed.  Since it's unlikely that we will be going on any vacations anytime soon knowing that it only takes an occasional trip to northern Queens to be reborn is inspiring.

We are already plotting our next trip there.

PT WITH PAUL /  by Micaela

Here's a little sample of one of Lula's therapy sessions with her PT Paul.  He is amazing with her and I really think the therapy has made a difference with her.  Notice that he never ever stops talking to her. I used to think that was a little kooky but I think it's actually a deliberate technique of giving her constant feedback.

http://www.youtube.com/watch?v=ccg2h05uc_I