28 September 2011


Sam has been crafting some custom made gifts for the kids in the studio.

Tiny wee skateboard


This is SO sweet but I am terrified.  I grew up in a thoroughly sport averse family.  My sister was by far the most athletic and she was a swimmer - not exactly a thrill-ride.  Sam, however, grew up in the country tearing up through the brush on 4-wheelers and throwing himself down a mountain on skis as soon as he could stand up.  I am not sure that I have the constitution to tolerate a daredevil of a kid.  Nonetheless, that appears to be what Roan is being groomed for.

Lula got an entirely different kind of present.  Lula's Physical Therapist has been really wanting to work with her standing so Sam devised this unit.  It's actually quite similar to ones that you can order through EI but it takes 3-4 months to get them.  I think this one is far more stylish, too.

It definitely has a slight Spanish Inquisition Rack vibe but I think the friendly animal blanket mitigates this. Actually, my first thought was that with some modifications we could totally dress Lula up as Hannibal Lecter with a straight jacket and a leather mask, but that may be a bit over the top.


Here is Roan's impression of Ralph Kramden and Ed Norton having an argument.

27 September 2011


Now that we have had a taste of escape we are desperate to get out of town at any opportunity, so  Sam and I took the kids apple picking.  Whereas in years past I would have spent too much time researching the picturesqueness of far flung orchards free of crowds, this time I looked quick and close.  We found the nearest orchard, which was called Harvest Moon Orchard (formerly Outhouse Orchard. Hmm, I wonder why they changed the name!)

On arrival we were herded through the parking lot like so many cattle, but the fields were open and the trees were bulging with fruit.  Roan staggered through the tall grasses and found his lunch on the ground.

We still do not take it for granted that we can leave the city and do things like this so we soaked in the expanse of sky and meandered through the apple and pear trees. There is something undeniably restorative about picking your own apples and we spent far too much time mulling over the quality and breed of apples at different trees all over the orchard.

big sky country

Sam favored the small Macintoshs


Adjacent to the orchard was the requisite old timey store that sold cider and donuts and jam.  This place was a bit on steroids, what you get for going to a place an hour outside of the city.  And, like the Queens farm we went to last week the prepared food, amid hundreds of acres of fresh produce and livestock, was all ultra processed and fried. Lunch was apples and hot dogs, go figure.

There were pears too, but they were being picked by the pros.

Lula (and a bit of Sam)

We have more apples than we know what to do with, so Sam has been gifting them to anyone who stops by.  We might go again anyway, not for the apples but for the trip.

25 September 2011


An old video of Roan and my mom courtesy of Sam.

24 September 2011


My friend Kristy sent me this link.  It's a song called Lula by a kids band called New Raspberry Bandits.  I think the song is remarkable and suits our Lula perfectly:


23 September 2011


Courtesy of Sam


I've had a really tough week, one has reminded me why I thought I wouldn't miss work to stay home with the kids.

I have this on my phone as a little pick-me-up that Sam took at home while being Mr. Mom

21 September 2011


The OT at Bellevue finally got in a demo model of the chair that she wants to order for Lula.  Sam took Lula over to give it a spin.

It's awesome.  It's fully customizable and adaptable and will grow with her until she is 5 years old.   It needs some help though; no matter how hard they try these medical devices all wind up looking like a cross between cheap Ikea office furniture and the creature from Aliens. It ain't pretty, but I think we can jazz it up.  I am imagining custom made covers in cute patterns, grosgrain ribbon, and maybe some christmas lights.

NB: We will NOT be getting this vomitous color of pink.

I was a bit skeptical at first that we would need this huge thing but the OT won me over.  Then after convincing us that we simply could not live without it we found out the catch; it will take the insurance company about 4 months to process the request.  Hopefully this will be Lula's New Years present.


19 September 2011


In a pinch, a peach works as well as a cake.


16 September 2011


It has become apparent to me in the past 15 months of motherhood that those in the business of creating, designing, and/or manufacturing anything for children or their parents has never actually had a child of their own. Ever. As mom to both a special needs child and a normally developing child I can also tell you that this incompetence appears in everything from socks to nebulizers. I don't know how this has happened. I can only hazard to guess that companies assign all children's products to recent product design grads or medical students who are too young to even think of asking parents for their input.

So, I thought that some unsolicited advice was in order.


1. Everything has to be made so that the parent can use or operate any product with one hand. THIS IS MANDATORY. Parents never have two free hands and to require us to figure out how to put something down before doing something else sabotages our amazing multitasking capabilities. If by some miracle we are not holding a child or a dirty diaper we are holding a large cup of coffee. Products that have failed in this task include cans of formula, wipe dispensers, diaper pails, bottles, car seats, and most of all, strollers. This also includes all medical apparatuses such as nebulizers, suctions, oxygen masks and especially feeding pumps, which pretty much require three hands.

2. Anything that might be used at night should be glow-in-the-dark. Any nobs, switches, buttons, closures, or clasps especially. I am still amazed that the genius who designed my daughters tiny fussy g-tube didn't think to turn the lights off in his office and give it a whirl. Hooking her up at night is akin to threading a one centimeter jellyfish tentacle through the eye of a needle in the dark.

3. Wipe warmers are bullshit. Stop trying to market them to us.

4. Somebody in the pharmaceutical industry had better come up with a cold medicine that we are allowed to give babies and an idiot proof way of dispensing it. I am not looking forward to another winter of colds when all I can do is sit in a steamy bathroom with a miserably stuffy kid.

5. 1950 has come and gone. So why must everything still be Pepto Bismol pink for girls and Viagra blue for boys? I'm not talking about bespoke wooden toys from Park Slope. High end designers got the memo on this years ago. I'm talking to you Buy Buy Baby. Nor does everything have to look like the jungle threw up all over it either. Chill on the monkey graphics.

6. Anything battery operated should automatically come with the batteries and if you sadistically decide to add four insanely small screws that need to be undone please include a screw driver that can be stored on the product somewhere.

7. Enough with the "Mommy Thinks I'm the Best" and "I Brake for Bottles" t-shirts. First person miming for babies is very "Look Who's Talking". It's creepy. Cut it out.

8. Anything that comes with a cover (car seat, high chair, bouncy chair etc) should automatically include at least one other cover. Much like a dog, a child knows when something is brand new and will instinctively mark it's territory by puking or shitting on it immediately. Cover number two should last the wash cycle on cover number one before another eruption.

9. Don't even bother designing toys anymore. My son has toys up to his eyeballs and all he wants to play with is the broom and Sam's keys (it's hilarious, btw, he looks like a janitor).

10. If you insist on designing toys and, even worse, design toys with flashing lights and mind numbing sounds please include a mute button so the child can play with the toy without driving mommy to take a sledgehammer to it.

Designers, I hope these are helpful tips. I expect to see these in effect STAT!

15 September 2011


 I awoke to this note from my mom this morning:

Oh my.  No good. I had to get ready for work, though, so mom had to fend for herself.

We had a relay race of a day with sitters, which meant that Sam was alone with the kids by 6:00pm.  I promised to be home as early as possible but I was late leaving work and the train was slow. I didn't get home until about 7:15.

Walking back from the G train I got this text from Sam:

Paris beckons for sure, but I would certainly miss the entertaining literature around here.

14 September 2011


Day three of working and let me tell you it's all so different now.  I think everyone learns as they grow in their job and in their life not to sweat the small stuff, but I think for me it's perhaps more extreme.

I used get so overwhelmed at work- mostly about not being able to resolve things fast enough.  Producing photo shoots takes a certain amount of faith that everything will somehow come together and I wasn't always so good at that.  Now after everything I've been through in the past year things I used to stress out about incessantly are now fun.  You need to reschedule an entire shoot because of rain?  No problem!  The manicurist cancelled the night before the shoot?  I'm on it!  I've had neurologists cancel on me.  I've had the post office fail to deliver essential medication and sent Sam off to the wilds of Queens to fetch it.  I know how to operate an effing oxygen tank and thread an NG tube down someone's nose!  Stress is relative, for sure.

The only time I don't like working is when I get home at 7 and I have half an hour to be with my kids before they go to sleep.  I have retroactive yearning for the day I have missed with them.  I quiz Sam and my mom - Where did you go?  What did you do?  Did Lula eat oatmeal?  Did she get tummy time?  Did Roan eat well?  Did you go to the park? The notion of quality time is bullshit.  For kids it's all about quantity.

When I miss them at work I troll back through my phone for funny videos to watch of them.  Here's one I found today from the weekend.  Cecelia, Sharda, and Sonya came over for a visit and we had an impromptu dance party (in the buff for some of us).

12 September 2011


I started a new freelance project today, which I am really excited about.  I get to leave the house in heels, speak to adults, eat lunch sitting down, and I never have to clean up puke. It is heaven.  However,  I fear that this may curtail my blogging, or at least the more extensive rantings that are time consuming to complete.  So expect more videos and less chit chat for the next few weeks.

Sam is embarking on an insane schedule during this time where he is spending the day taking care of the babies and then going to the studio at night as soon as I get back from work for several hours.  It is this level of nonstop work that I always fear will lead to an accidental loss of fingers with a chopsaw at 2am.  Sam as usual is trying to make everyone happy, so of course his own well being is the first thing to go. 

Since we are both working so much we have decided that it's time for Roan to stop lazing around on his little butt and start earning his keep.  He is heretofore in charge of the cleaning.

11 September 2011


Yesterday was my mom's 65th birthday, which she celebrated at dinner with friends, which was lovely.  Friday was her last day at work as a nurse at Lenox Hill Hospital which she celebrated by giving two old men enemas.  But I digress...

Happy Birthday to my mom who has taught me that being a mom can only make you more yourself than you were before.

Grandma Marion, me, mom circa 1982

Blinded by the light

10 September 2011


Well, not really. Lula had two and a half hours of therapy during that time, but otherwise I had neither sitter nor Sam.

It went great. I tried to be two steps ahead of the two of them all the time.  When the feeding therapist was here I prepared Lula's tube feeding and Roan's lunch.  When Roan got up for Lunch I gave Lula tummy time.  When the PT came I got everything ready for us to go to the park - packed the diaper bag and loaded the stroller with a blanket, ball, etc.  When the OT came after the PT I strapped Lula onto my front, loaded Roan into the stroller and we headed to the park.  I looked like some sort or urban pack mule, but I actually felt pretty balanced. We sat in the grass behind the tennis courts in the park. The OT worked with Lula, who despite being on her third therapy session of the day rocked it out.  Roan flirted his ass off with the entire Brooklyn Tech girls track and field team.  My neighbor Eva and her son Isaac, who turns one tomorrow, joined us and we blew bubbles.   When we came home Sam was waiting for us with two neighborhood kids who were trying to do hand stands on the sidewalk.  Roan tried to join in which was pure entertainment.

It felt like a victory to me, as close to a normal day for most moms as I have ever had. I have to constantly remind myself to compare us to ourselves and not to others.  Compare Lula to a normal 15 month old and she fails in nearly every regard.  Compare 15 month old Lula to 14 month old Lula and she is now able to put her hands in her mouth, she's making more eye contact, she's tracking some and her lungs are much clearer and stronger. Lula has also turned a bit of a corner with feeding therapy.  It's been such a fraught and stressful thing to work on with her, but since we changed our approach to food being about flavors, textures, and about enjoying them, about food being fun and not something to force down Lula's neck, it's all gotten so much better.  Now she's gnawing on pickles and lapping up peanut butter.  I am trying to think of myself in the same regard.  Being a mom is still difficult but less daunting and frightening and more about fun.

After dinner I walked across the street to the ice cream stand (yes, there is an ice cream stand within 50 feet of my house). We have tried really hard not to make a regular habit of dashing across the street for a quick cone of salted caramel ice cream, but it was a glorious late summer evening.  We sat out on the stoop and enjoyed.

Bitter chocolate almond with strawberry black pepper sorbet. yum!

08 September 2011


I am sure you were all afluster not knowing who sent us the mystery trike.  Well the mystery has been solved!  My dear friend and fellow twin mom, Suzan, was the culprit.  I had to email the company to sleuth it out.  So sneaky!  Thank you Suzan!

07 September 2011


I came home this afternoon to a very large box.  We had all been out - my mom, Roan, Lula, and I - at Beer and Babies, and upon our return this had been mysteriously left in the kitchen:

We have no idea who sent it, where it came from, or who even signed for it.  I called the company who shipped it and they were closed (at 4:45pm. Seriously??) It's a fantastic but very large tricycle.  I think Roan will be in second grade by the time he is big enough for it.  It is so fancy though, I must say.

I feel like the conclusion of this mystery is going to be someone saying "I told you I was sending the Schwinn last week. Remember?" but unfortunately my mind is now a mere way station between thoughts and my ipad calendar.  If I don't write it down within 30 seconds the thought is gone forever.

Anyone out there taking credit for this extremely generous gift?

06 September 2011


...that is indeed what little girls are made of.  Especially Lula.

My friend Lior is a chef and something of a spice wizard.  He concocts amazing mixtures of exotic herbs and spices for restaurants.  He once showed up at our house carrying $200 worth of Madagascar vanilla beans that were on the way to a customer (he gave me one, which I think cost about $8, and I made cookies. Delicious!)  He also sells the blends in his store and online.  When I was pregnant I photographed all of the spices for him in my basement.  I set up a still life studio and spent hours pouring and spilling endless mixtures of orchid root, smoked salt, and star anise among many others.  No basement ever smelled so divine.


A couple of months ago Lior, who is newly married to my great friend Lisa, called to ask if it was OK to name his newest spice blend after Lula.  I gasped, and then started sobbing immediately.  My friends never cease to astonish me with how wonderfully creative they are in their generosity.

The spice is a blend of fennel, fleur de sel, and seaweed, which is perfect since Neave, her middle name, is an island off the north coast of Scotland.  The coastline is covered in seaweed and the sheep wander down from the grasses to feast on what has washed ashore. I want to come up with a recipe that marries the spice with a traditional Scottish dish, maybe like a fish stew, once the weather crisps up.

Here it is.  How many kids can say they have their own spice blend? So recherche.

05 September 2011


Friday afternoon we packed the car with the kids, two diaper bags, a cooler, an oxygen tank and a heap of other crap and headed for Fort Tilden beach with Cecelia and Jason.  Things got off to an iffy start. As we drove up to the entrance we saw the gates locked and a rather large PA (lowly assistant on film shoots) shooing people away.  They were filming Boardwalk Empire.  We were dismayed - the one day we finally make it to the beach and it's closed?!  He redirected us towards another path and off we went.  And went. And went.  We were walking parallel to the ocean, which was clearly a problem, but once we turned to cross into the dunes we dipped down into what I can only describe as a low budget reenactment of Apocalypse Now.  I was wearing Lula, Sam was wearing Roan and we had a stroller packed with about 8 bags of baby and beach gear.  Sam wanted to forge ahead through calf deep mud.  I was on the verge of a total sense of humour failure, but I plunged one flip flopped foot in front of the other into the sludge desperate for the ocean.  We got it.

If you can only get a single 5 hour vacation your entire summer I would highly recommend this one.  It was a perfect day, the beach was practically empty, and everyone enjoyed themselves immensely.  Lula was completely zen from the moment we hit the sand.  Last winter she was so sensitive to the wind that she would hyperventilate at the tiniest gust, but she turned her head towards the ocean and was about as calm and content as I have ever seen her for the entire 5 hours.

Sam and Jason rigged an elaborate makeshift tent for Lula and we took turns taking dips in the water and hanging out with the kids.  Roan finally made his peace with the sand, which he had not been a fan of before.  I had been so worried that the kids wouldn't adapt well to this totally new environment.  I imagined Roan trying to eat the sand or refusing to walk in it and Lula freaking out about the wind and everything would be difficult and messy, and instead it was all pretty effortless (apart from the swamp).  Having Jason and Cecelia there made everything easier too, and of course it was great to sit on the beach with our friends and catch up.

Courtesy Cecelia

Courtesy Cecelia

Yes indeed

04 September 2011


Not that I want to revisit our trip to the hospital too much, but I forgot that I took these photos in the hospital last week and I wanted to share them:

At least Lula gets great views in hospital rooms

Lula in recovery.  I love the sort of wistful expression on her face

Tiger gown

NB:  Can you believe that the nurse in recovery told me I wasn't supposed to take photos??!!! As a photographer I have been told this umpteen times and I don't take it personally and I stop shooting.  But this is my kid!  I just looked at him and said "I don't give a shit" and kept shooting. 

03 September 2011


Lula LOVES the beach.  Further details to come.

01 September 2011


Whenever Lula is in the hospital her little alien heart monkey mascot, as yet unnamed, goes with her.  She was a gift from Lula's aunt Aggie.  This time around our little mascot got frisky.  I think she needs a name.  Anyone have any suggestions?  Leave them in the comments!

Lula getting Frankensteined up for her EEG


Well, Hellooooo there!

!! HELLO !!


Hospitals are places where even the most astute medical professionals have to be constantly reminded that their patients are people whose lives have been uprooted. When you enter the gilded doors, passing the wings and elevators named after people who were surely rich and are certainly dead, you are presumed to check your life at the door. A hospital is very much like an airport or possibly a prison. You have no ownership of your own time, your own space, or your own body.

Lula was admitted to the hospital on Monday, a scheduled stay to perform an array of tests including a nerve conduction test (she failed), an EEG (abnormal but no sign of seizures), an eye exam (normal), and a muscle and nerve biopsy (results in a few weeks). From the outset mistake were made - small ones that did not affect treatment or diagnostics but very much affected the experience of our stay. A roaming assemblage of doctors of various residencies and specialties wandered into her room uninvited and would bombard me with the same questions again and again. Hours of nothing would end with 3 different departments showing up at the same time to examine her.  Where was anesthesiology, who was asked several times to come by?  They had the wrong ID number for her.  There was no feeding pump ordered for her and they didn't have the right formula. 

Sam stayed on Monday night and didn't really sleep at all.  At 7:30am he went to the OR with Lula for the biopsy with no time to eat or drink anything.  After 5 minutes he could feel the blood draining from his face and he had to lie down on a cot.  It would have been prudent for the staff to make sure he had a break before surgery, but I don't think that's ever a consideration.  Later in the day Lula's nurse drew 7.5mls of her dysmotility medication instead of 0.7 mls because of a clerical error.  I caught that one. The doctors were suitably horrified at the error, but could not figure out how it happened. When they came in to apologize they had to also tell us that blood that was meant to be drawn in the OR hadn't been.  Did we want to come back another time to do it?  Um, NO.  I wanted nothing more than to get it all over with.

I don't mean to belittle what doctors do. They can only contribute to the future of medicine by learning from the present, and they devote obscene amounts of their life towards furthering healthcare. But as good as they are at medicine they are absolute masters at wasting other people's time. They are chronically incapable of streamlining and coordinating with other doctors. And they seem unconcerned with how their poor timing and inefficiencies affect their patients. They are so focused on how medicine is affecting their patients health that they are oblivious to how their quality of life affects their health.

I propose that hospitals need to be run more like hotels.  Every patient needs a concierge; someone whose sole job is to coordinate the patient's schedule, stagger the doctors exams,  make sure all equipment etc is there in advance, and to make sure that caregivers have time to eat dinner or take a nap.  Every doctor should have to sign in upon entry to the room with their name, specialty and direct phone number which the patient should be given at the end of their stay along with a list of support groups and online resources.

Lula has recovered so well from everything now that we are home.  We are back to being people, not patients, and we took the day off from therapy and doctors, and tests.  My sister and I took the kids to the Prospect Park Zoo, where we petted the Alpacas and ogled the Baboons.  Caitlin wore Lula in a carrier and I put Roan on my shoulders to watch the Sea Lion show.  It was the perfect antidote.