QUIZ TIME!

Lula has an extremely expressive head of hair, capable of inadvertently transforming her into various guises.  And so we here at the Walker/Murray household have created a post bath quiz game called "Name that Iconic Hairstyle!"

Now we invite you to do the same!

Click on the image below to view. Results will be posted later in the week.  Check back to see how you did!

BALLGOWN

Aunt Aggie bought this skirt for Lula but it's a little big so we thought Roan could break it in for her.  He loves it!

SLEEP NO MORE

Last night Sam and I went with 27 friends to what I can only describe as an "experience" called Sleep No More.  It is 3 hours where you are submerged in another world completely outside of the one you normally inhabit.  That world is Macbeth meets The Shining meets Vertigo meets hallucinogenic mushrooms.  For those of you who are neither faint of heart nor weak of knee I would highly recommend going.

I was physically and mentally tapped out, however, and slept fitfully with a sour stomach (this was likely due to a dinner of pork dumplings and lobster rolls from the High Line food trucks, but nevermind). I woke up feeling disjointed.  Sometimes the problem with letting go for a few hours is that the reentry into my real life can be jarring. 

Lula had an eye appointment at Bellevue today so off we went and my mom stayed with Roan.  We got to Bellevue at 1:30 and it did not look good. The waiting room was full and the receptionist was already defensive before I even opened my mouth.  "There are 14 people ahead of you so I have no idea when the doctor is going to see you".  Then she added "this is a public hospital so that's how it goes".  i.e. If you have no money your time isn't worth anything either. Fabulous!  Welcome back to my real life.

The appointment went great, though.  The doctor examined Lula's eyes and dilated them with drops (Fun fact of the day: Blue eyes dilate faster than brown eyes because they have less pigment.) She was looking for some disease that the geneticist thought might have caused the demylenation and she didn't find it.  It's so rare for Lula to have a doctor's appointment where they say "Everything looks great! See you in six months", so I truly savor the times I don't leave Bellevue in tears. As an added bonus she slept in the cab both ways with no fussing at all.

When we got home my mom was still out with Roan, who had failed to take a nap for more than half an hour.  I don't know what it is but whenever my mom is here Roan's naptime evaporates.  This was the first nonstop Roan marathon day for my mom since she was on vacation and since Roan learned how to walk. She was asleep by 7:58pm. Sleep tight mom.

KISSES

I know he's my kid but is he the sweetest or what?? (the husband's not bad either)

SPECIAL DELIVERY

It was a banner day here at the Walker Murray house.  Started the day with a temperature for Lula, who had spent the night sans dysmotility meds due to a pharmacy snafu.  Not sure if the temp and lack of meds were related but neither helped the other.  Whenever Lula gets a temperature my heart leapfrogs up into my throat and my stomach drops to my ankles and they both stay there until she's back to normal.  Rounds of Albuterol, Ibuprofen, a little supplemental O2, cool washcloths, plus lots of fussing, lots of rocking, and a little singing. (By the way - a little aside. I totally underestimated the usefulness of singing with babies, for the baby but also for the parent.  It drowns out screams, regulates your breathing, and does wonders to calm you down by distracting you with visions of farm animals.)

The fever put an end to my ambitious plan for the day, which was to go to the grocery store. So much for leaving the house. 

Then our sitter Sacha, who is awesome and such a great energy to have around, was giving Roan a bath when I heard a splash, a cry, and a howl and Sacha came running into the kitchen looking alarmed and holding a bloody faced and wet little boy.  He had managed to spread the blood all over himself so he resembled Heath Ledger as The Joker and he got a good amount on Sacha just for added effect.

Turns out his new front teeth cut the inside of his lip, which instantly went all Angelina Jolie on him. We cleaned him off and gave him a lemonade and blueberry pop which worked wonders.

You shoulda seen the other guy

Crisis averted we moved on to the next catastrophe, which was that Lula's meds still hadn't arrived.  I called UPS and they claimed they tried to deliver it but no one was home.  I was fuming.  I have scarcely left this house in over a year.  I spent an hour on the phone.  The people were so robotic.  I know it is so foolish to get angry at other people for not caring about your problems, but I was pretty amazed that a sick 13 month old baby did not seem to elevate their efforts one iota.

In the end we tracked the package down and Sam had to haul his ass up to Maspeth to get the drugs.  He then went back to the studio, where he still is now at 12:20am.  He has been working like a maniac trying to keep on top of all of his various projects and a detour to Queens was not on the agenda.

But now the babies are asleep, Lula is back to normal temp, and I am going to go collapse.
Nighty night!

GOING FOR A STROLL

To the doctor who said Lula will never walk...

...we'll just see about that.

OLD SCHOOL

I was clearing my phone out of old photos and I found this doozy.  I think this was day 1.

Sam and Yoda

THE LONG HOT SUMMER

It is absurdly hot here.  It was 104 degrees today.  It is 11:00 at night right now and it is 87 degrees. 87 DEGREES!! It was so hot that when I took Roan to swim in the pool across the street today the water was too warm.  It felt like a giant bathtub.


Lula has the right idea and is keeping her movements to a minimum.  OK she often keeps her movements to a minimum, but this right here, believe it or not, is a therapy exercise.  She is trying to stay upright.  Sometimes she reminds me a little bit of a tree sloth.  I personally think tree sloths are adorable.

Roan started to drift off in his swing as soon as I took him outside.  He dozed like a drunken hobo in a hammock.  Pardon the shaky camerawork, by the way,  I was standing in a bush.

THERAPY DOG

Gracie likes to keep very close when Lula is getting therapy.  I'd like to think it's because she is protecting Lula, but honestly I think she's hoping for a little scratch from the therapist.

ON DOCTORS AND OTHER PEOPLE

Formerly, when religion was strong and science weak, 

men mistook magic for medicine.

Now, when science is strong and religion weak, men mistake medicine for magic.

Thomas Szasz, The Second Skin, 1973

We have had two colossally devastating but enlightening doctors appointments of late.  The first was with Lula's geneticist, who explained that she has something called demylenation.  What this means is that the white matter around her nerves is lacking and therefore it inhibits conduction or communication between the nerves.  Also her corpus collosum, the part of the brain that connects the left and right sides, is small.  He said that essentially this means that it is unlikely that she will ever walk or talk or do much that a "normal" person does.  He was compassionate in his delivery but did not offer much hope.

Our next appointment was with the neurologist.  I am aware that people will often blame the messenger for bad news, but all news aside, she sucked.  I thought she might be able to add more nuance to the geneticists explanation, maybe have diagrams of the brain to explain what was on the MRI.  She did not.  She repeated some of what the geneticist said, but her delivery was akin to a mechanic telling you that the transmission in your 1990 Honda is going and there's nothing you can do about it.

Neither doctor offered support groups, counseling, or fellow parents to contact.  The neurologist started to put on her jacket and said "I'm going to let you go now" when I was still sitting in her office sobbing.  Clearly she had moved on already.  She basically suggested we put a DNR on Lula (Do Not Recusitate), take her home and wait for her to die.  I suppose to her not having a properly functioning brain means that your life has no purpose.

Here is what I have realized about doctors;  I have asked too much of them.  They can read MRIs and do blood tests and diagnose things.  They cannot tell you how to live with the information they give you.  They have no clue what it is like to be the parent of one of their patients.  They never ever have to change and bathe and feed their patients. They are scientists, which makes most of them great doctors but absolutely shit philosophers.  Do not ask someone who spends 100 hours a week working what the point of life and existence is for someone who will likely never be able to have a job. 

The night of the geneticist appointment I emailed my neighbor Eliza who has an 8 year old son with Cerebral Palsy and she came right over with a big smile and a bottle of wine.  She is amazing. A M A Z I N G. She said that the first year of her son's life every doctor's appointment made her feel like utter shit.  He failed every test. He can't walk or talk and he will certainly never become a neurologist.  But he loves music and the ocean. He horseback rides and eats chocolate croissants in the park in the morning.  He is completely dependent on others for his care, but he gives so much back to them in return.

I have noticed that the further away I get from doctors appointments the better I feel. I don't think this is denial, I think this is perspective.  Even the most concrete medical diagnosis is still only one piece of the pie.  The diagnosis pushes you to a place that most people are too terrified to ever be, the place where you wonder what the point of existence is, why we are here, what our purpose is.  I realize now how unbelievable narrow my perspective was before.  Our purpose is not to excel, to achieve, to be talented, get into college, get a job, and support ourselves. Our purpose is not even to be self sufficient and independent.  We may be all of those things at some point in our lives but we will also not be any of these things at other points.  Right now I can say that the only purpose, the only purpose is to love and be loved.  The rest of it is all distraction and circumstance.  I don't think I would have ever begun to realize this without Lula.

LOOONG DAY

Man, I'm tired!

COLD WATER / HOT DAY

Roan is still a bit leery of the sprinklers. He wants to fit in with the big kids but he's not quite there yet.  I still cannot get over the sheer volume of the screaming that children emit at playgrounds.

ROAD TRIP!

Roan and I went on a road trip this weekend, and it was long overdue.  I have always been a road trip person, and up until having the babies I would usually get a case of insufferable wanderlust every month or so and need to book it for further fields.  Our lives have become significantly less portable, and apart from a day at King Spa in NJ I had not left New York State since February of 2010 until this weekend.

We set off for Connecticut to visit my sister at 9am, large iced coffee and podcasts of The Moth on hand.  I miss driving so much!  It felt incredible to be on a highway. Roan was great and chatted to himself in the car for a while and then dozed off after visiting his first I-95 rest stop bathroom.

Caitlin is working as a counselor at a summer camp.  This is a real camp, not some fancy resort camp. Everyone sleeps in big canvas tents on platforms and they have to cook their own meals on a campfire. We tested out Roan's new backpack.

On the Road

First we took Roan swimming in the lake.  He was not a fan of the sand, which he seemed to think was trying to devour his feet, but he loved splashing around in the water.

He did not go on the trampoline (back left)

Next we set out on a hike, but not before a much coveted NYC snack of a bagel with tofu cream cheese.

Not exactly camp food

I have found that singing is one of the most useful tactics for distraction with the babies but my repertoire is small so Caity taught me a new song

We hiked up to Lookout Point (doesn't that sound so camp-y?) and could see the other side of the camp.  Caity pointed out to Roan that this is where he will be in 7 years

Summer 2018, here I come!

I got to take like a 10 minute nap under the trees...

Then we went to the farm, but there were only 2 donkeys and some spitting alpacas so it was kind of a bust :(

At the end of the day we gave Roan a bath in the slop sink in the girls bathroom

Kiss on a clean nose

At 7pm we hit the road back and Roan had his first ever dinner at Friendly's!  It was his first time sitting in a standard issue restaurant high chair. He did pretty well except for a major wardrobe malfunction that happened just as our food arrived and necessitated me stripping off all of his clothes in the bathroom and throwing them away.  What fun!

 

We made it as far as Westport CT and I started to get a little sleepy so I decided that we would stay in a motel.  I love cheap, old motels but I have never stayed in one with a baby before.  I decided to forgo all the chain motels and stay in a local place called the Garden Park Motel.  Roan was sound asleep in the car so I figured it would be easy to plunk him down on the bed and get some rest.  Um, no.

Postcard courtesy of the Garden Inn Motel

The room smelled exactly like this strip bar that I used to photograph in Michigan called the Gold Nugget, 50 years of stale cigarette smoke.  But the bed seemed clean and I turned on the AC hoping it would clear out the smell.  And then Roan woke up.  At first he seemed a bit spun out about his strange new surroundings, and then he thought it was awesome.  So awesome, in fact, that he wanted to stay awake and roll around on the bed and explore every inch of the room.  I got him in bed with me and we snuggled a bit until I realized that the ashtray smell had permeated the mattress, the sheets, the pillows, everything.  Every time Roan laid down his little face I pictured the skeezy truck driver who had no doubt previously occupied this bed.

I couldn't take it. I packed everything up and went to return the key and beg for a refund. It was midnight.  The office was closed. Everyone was gone and there was no suggestion as to how to contact anyone. Shit! I left the key in the room and made it back to Brooklyn by 1:15am. Roan slept the whole time and stayed asleep thankfully when Sam put him down in his crib.

I was thinking the whole time about how little this little boy has experienced outside of our everyday routine. He did pretty well but I think that neither of us was quite ready for the Garden Park Motel. We will have to get on the road again soon, hopefully next time with Sam and Lula.

DINER

There comes a time every week or so when I literally must leave my children this instant.  It's like I develop a sudden allergy to them and to my home. My body rejects everything but solitude.  I try where possible to schedule at least a couple of hours of me time every week or so, even if it's something as engaging as going to get dog food or going to the doctor (a fellow mom I know was so excited because she has an optometry appointment and an obgyn appointment on the same day!)  If I don't plan a reprieve I hit a point where everything and every one starts to make me irate and I have like T-minus 15 minutes before I lose the will to live.

This happened to me yesterday.  My previous respite of brunch with the ladies was thwarted by Lula spiking a temperature of almost 105.  Prior to that I had hardly left for more than an hour since my birthday (when she also had a fever. Coincidence? I think not). Knowing in my mind that I would have my dad and Sam here I had been plotting my escape all day.  Sometimes this can backfire though because I panic that I won't exploit my freedom enough.  Feeling pressure to relax is a bit like rushing to yoga class.

Anyhow, I wound up going for a walk in Fort Greene Park, which was gloriously dusky. I listened to "This American Life" on a podcast and watched a bunch of guys playing soccer (or futbol).

The clouds suddenly came in, however, and there was a fantastic rain storm so I booked it to a nearby diner.  The light was remarkable, the combination of dark clouds on one side of the sky and sunset on the other.  I thought there might be a rainbow and sure enough, there it was:

I treated myself to a serious diner dinner, which was perfect.  I spent the better part of my formative years sitting in a booth in a diner, smoking cigarettes, drinking coffee, and eating food that my internal organs shriek at in horror.  To this day nothing restores me quite like a tuna melt with fries and a vanilla shake.

I felt grossly overfull but a bit otherwise a bit calmer and clear of head.

BACKYARD

Quote of the day:

In the midst of winter

I found there was within me

An invincible summer

Albert Camus via "Keep Calm and Carry On"

Not sure that I have yet found my invincible summer, but a Brooklyn summer with my brood in the backyard ain't bad.

GRAMPS

My dad has come to NYC for another visit. I put him to work immediately.

LIFE LESSON

I was reading today an obit for a folk singer named Facundo Cabral, who was tragically shot to death in Guatemala. The Huffington Post article included this incredible and heartbreaking quote:

The 74-year-old singer gained notoriety in the early 1970s as a protest singer in Argentina. In 1978 he lost both his wife and infant daughter in a plane crash... In an interview with Associated Press in 2008, he said:

'I love life so much because it cost me so much to enjoy it.  

From the cradle to the grave is a school, 

so if what we call problems are lessons, 

we see life differently.'

CARRY ON

After months where this blog served as a reservoir for a flood of thoughts and emotions, I have felt a bit at a loss as to what to write of late. I am trying to process things, to grasp ideas so much larger than anything I have ever been confronted with before that I don't yet have any words.

So, I have been looking to the thoughts and words of others. Sam gave me a book for Mother's Day which went along with some coffee mugs I got from my mom for Christmas, all bearing the now ubiquitous slogan from Britain during WWII, "Keep Calm and Carry On". The title is an apt goal for this house, but my favorite quote in the book is this one:

Always be kind,
For everyone
Is fighting a
Hard battle.

- Plato

I have the sense that we keep from each other our deepest pain because it seems out of place in our day to day lives, but in protecting our pain we collectively do each other a great disservice. Pain is only exacerbated by loneliness.

There is nothing I can do to change Lula or our situation. All I can do is share it and share her with the world and hope that others feel she has a place in this world even if it's in a way no one has understood before.

I would like to ask anyone who is reading this who wants to to share their dark moments and/or how they found a way through them in the comments section. You can be anonymous, you can reveal all or no details, but please share what you think will help me and others who are trying to get through a really hard battle.

Thank you

THUMBS UP

Lula just started doing this today - I love how she uses one fist to prop up the other one so she can get to her thumb. Clever!

And this was after spiking a brief fever of 104.7 and giving everyone a heart attack (again).

Video Courtesy Auntie Aggie

HEAVY METAL PARKING LOT

We went to some free music in Fort Greene Park this morning, apparently along with every other kid in Brooklyn.  I don't think I have ever seen so many strollers!

It was a folksy, fun bluegrass band and all the kids seemed to love it. Unfortunately the concert coincided with nap time so my kids were a bit dazed.  Still, it was fun for Sacha and I, and it's always good to get out of the house.

KISSES FOR LULA

LASCAUX

One of the first things I studied in Art History at RISD were the cave markings in Lascaux, France.  They are among the earliest forms of art and include hand prints on the walls.  They are considered the world's first "signatures", which I guess is what this is:

GRAVITY DEFYING PACIFIER

SUMMER STROLL

The weather here has been great so we have taken to an afternoon walk in Fort Greene park, often with our neighbor Eva and her 8 month old son Isaac.  We sit in the grass and chat and watch the kids.  It's a blissfully simple daily routine.  I am getting better at orchestrating outings, including taking Lula's feeding in a travel backpack.  She doesn't love the stroller but she is getting a little better at tolerating it.

On our way to the park

The heat is still getting to Lula's skin and I was finally able to coax her hair into pigtails! She was not thrilled with the process, but come on, how cute?!

Add caption

In other fashion statements, Roan wore his daddy's old t-shirt.

Ahoy!

TRICK OF THE DAY