30 May 2011


I just found this old video of Auntie Aggie and Roan. So cute. He never sits that still anymore.


This is how Roan sleeps - curled up, butt in the air, arms tucked in like a turtle.  I now understand exactly where "childs pose" in yoga comes from.
Note he is wearing my undies circa 1977
Lula used to hate being on her tummy and would immediately roll over onto her back, although she didn't really like being on her back either.  Then one day she was fussing and I put her in Roan's turtle tuck and she zonked out immediately.  However, it's impossible to get to her G-tube when she's on her belly so we put her on her side and prop her with so many sandbags it looks like we're protecting her from a flood.
She's sleeping in the buff because it's already hot as hell here.
This is exactly how I slept when I was pregnant. Propped up with countless pillows and blankets; the poor man's zero gravity machine.

Of course, we're all so tired around here that we will sleep in just about any position if given the chance.


I made an appointment to get my hair done today (i.e. hide the gray) several weeks ago and warned Sam that he would have to get himself backup, but in the end he decided to go it alone with both babies for the entire afternoon.  I think the longest I have lasted with both of them by myself is about 2 hours, although I'm pretty sure I had lost the will to live after about 45 minutes.

Some people probably think that sounds insane - to always need reinforcements with just two kids. I can't imagine what Lula's namesake, my great grandmother who had 12 kids including triplets, would think of my wimpiness.  I am willing to bet that she never hired a delightful Pratt student to babysit her kids in Mississippi.  Truthfully, much of the time it's fairly manageable, except when it's not, and then it's unbearable. Lula always wants to be held,  Roan always wants to move, and when they both need to sleep or eat there is literally no way for one person to do it all at once.

Things started well. Mid-highlights I got these two photos from Sam. He took both kids to the park - one in the stroller the other strapped to his torso like a devout Brooklyn dad.

Both asleep?! What a showoff! I think he was quite chuffed with himself at first, but by 5:00 he was getting desperate.  I got home at 6:00 and he looked pretty frazzled.  But both kids are still alive and my hair looks fabulous.

27 May 2011


I was never very dogmatic about breastfeeding. It drives me nuts when people make blanket statements about child rearing like "Mother Nature knows best!" and consequently turn birth and childcare into a contest of organic showmanship. In the case of breastfeeding I was actually quite lucky and after a bumpy start I was able to simultaneously nurse the twins using a pillow the size of a truck tire for two months. At that point Mother Nature and an extremely dimwitted doctor conspired to throw everything for a loop and Lula started to lose weight.

Once they put in a feeding tube she pretty much stopped nursing, which was heartbreaking, but I pumped so she was still getting breastmilk. I do think it has made a difference to her health, and so do her doctors. When we last saw her Gastroenterologist she said Lula is ready for formulas that will be more caloric and that would allow me to stop pumping, which is something I am VERY ready to do.

I have now pumped 3 times a day for 1/2 hour each time for nearly a year. That's 525 hours of pumping, or almost 22 days. Twenty two days,  people.  22 days of feeling kind of like a cow.

However, I am really not digging the new "food" options.  The doctor gave us a sample of one of them and here is the list of ingredients:

I am by no means a purist when it comes to food - I like my peanut butter of the "Jif" super creamy variety - but in general we try to stay away from ultra processed foods. We mostly make Roan's food, and try to cook for ourselves if we have the energy.  I haven't been to a McDonalds since 1998.  Hell, I make my own soda (Soda Stream! Best invention ever!)

I think what bothers me is that this would be almost her entire diet.  She gets some formula now and eats a small amount of food by mouth but this bottle of mystery liquid would be all of her nutritional intake. I know that she's not exactly the poster child for natural living - she has a plastic tube permanently inserted in her stomach and takes 3 medications every day, but this feels like nothing will be natural.

The problem is we don't really have any other choice.  I asked the doctor if there was a more "natural" option and she said well sort of, it's less processed and is a sort of blended food, but it's made by Nestlé. Natural does not come to mind when I think of Nestlé. Hot chocolate powder with dehydrated marshmallows in it comes to mind.

Unfortunately, for Lula the more processed the food the more easily she will be able to digest it. Maybe this is a family trait. My mother eats like a 13 year old boy if left to her own devices. I have never known her to not have a freezer stocked with Hershey's kisses, but if you buy her fancy organic chocolate she never eats it. She keeps threatening to take Roan for his first Big Mac.  Her cousin Robin is just as bad.  She once told me she can't eat any fresh vegetables because they make her sick.  I swear she subsists entirely on Black Russians, soda, and whatever snacks they have at Bingo.

I am going to keep looking into better options, but as with most things child-related my ideals are going to have to be set aside for a while because they will probably just make me stressed out. In the end I can only hope that, being a girl who myself was raised almost entirely on chinese takeout, pizza, and bagels, the family constitution will see her through to a better place.

23 May 2011




New hat from Grannie Joss
Mango juice at the Brooklyn Flea


We here in the Walker/Murray household are extremely divided on the subject of Marmite.  For anyone who doesn't know what Marmite is Sam would describe it as a delicious spread that you lather on buttered toast and eat with your tea.  I would describe it as a foul smelling jar in my cupboard filled with gunk that tastes like a smoothie of stale vitamins and molasses.

Sam's side of the family, being wholly patriotic, are all pro-Marmite. It gets more complicated on my side because my stepmom Cam is a Brit and therefore pro-Marmite too, so team Walker has a traitor in it's midst. Cam used to have a newspaper clipping on her fridge, in fact, about a study that showed that you had to start feeding someone Marmite regularly before age two or it was unlikely that they would ever like it.  I believe this is called brainwashing.

But as Roan will literally eat anything he can get his hands on we thought a little Marmite on toast was worth a go.

Reluctant but curious

...Yeah, not convinced. Although he ate a ton of it.

21 May 2011


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.

20 May 2011


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.

16 May 2011


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. 

15 May 2011


I haven't seen "The Hurt Locker", the movie about bomb diffusing experts,  but I imagine it's a slightly less domestic version of this (make sure you have your sound up as the narration is very low):

13 May 2011


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?

11 May 2011


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.

10 May 2011


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

08 May 2011


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.

05 May 2011


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.


OMG Frog legs!

OMG orange sized head!

02 May 2011


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.

01 May 2011


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?