30 December 2011


Courtesy of Whitney

When I remember who I was before having Lula and Roan I am astonished at the sense of entitlement that I had to my plans. Plans.  Plans to accomplish certain things, do certain things, own certain things, be certain things. I had so many plans and so many petty frustrations at not being able to force them into realization. Nothing that happened in 2011 was ever, ever a part of my plans.  But it is without a doubt the year that I have accomplished the most, that I have been the most present in my own life.

As hard as 2011 was it was the last year that Lula was here and I am therefore sad to let go of it. I have a fear of retreating into peacefulness from the chaos of Lula's condition. When you lose someone everything becomes sacred, even the bad things.  I had to pause before throwing out a bottle of Miralax yesterday because it was hers.   I want to learn to remember Lula without being swallowed by sudden, urgent pulses of grief. I want in the new year to learn to let go of things that keep me tethered to loss and to unrealized expectations without retreating from feeling in general.

 My new years resolution is to think of Lula whenever I am overcome with petulance or longing and simply be grateful that I can walk and talk and breathe with no effort.  Anything that happens beyond the health and safety of myself and my family is an unmitigated bonus. I know it will be a lifetime of letting go to get there.

Whitney's painting for Lula surrounded by hearts from Jake

27 December 2011


Here is a link to the "Lives they Loved" section on the New York Times Magazine, where readers submitted photos and stories of the people they lost this year.  See if you can find one amazing little lady. I can say that from reading all of these, Lula is in remarkable company somewhere in the ethos. 


Christmas was wonderful. Christmas eve we braved the tourists at Rockefeller center to see the tree followed by a viewing of the sob-fest that is "Its a Wonderful Life". Christmas day a present opening extravaganza was followed by a massive potluck dinner for 14 and a bonfire outside until 1am.  We are still recovering.

The best ornament
Pre - holiday ornament snack

Roan's maiden voyage in a NYC horse-drawn carriage
The first present he opened and by far his favorite. After that he lost interest.

We have an odd mustache tradition at Christmas.

24 December 2011


I wanted to do a post thanking all of the incredible nurses that helped take care of Lula, and I will do so at another time, but right now I want to tell you about Faith and her mom Nicky.

Nicky was the last nurse we were assigned.  She was a day nurse who was sent to us after a series of decidedly lackluster day nurses; women who probably wanted a job where they could read Us Weekly between resetting machines.  After the third nurse bailed on once she realized that being with Lula was 10 hours of nonstop action I railed the nursing agency; you had better send me someone A M A Z I N G or I was going to pull all of Lula's nursing and go to another agency.

The first day that Nicky arrived I was in a royally foul mood.  I had spent a stressful morning at the hospital with Lula getting yet another EEG and wanted a few minutes to myself before meeting the new nurse, but Nicky arrived early.  I was overwhelmed and cranky and I walked in and barked at her to leave and come back in 20 minutes.  I think most people probably never would have come back but Nicky did.

Thank God she did, because I am not exaggerating when I say that Nicky is Florence Nightingale meets Mary Poppins.  First of all Nicky has 6 kids of her own. SIX kids. The oldest is 21 and the youngest is 5 months old.  This woman knows a thing or two about kids. She connected immediately with Lula, which was not easy for many people.  She was warm and sweet.  She never put Lula down and constantly massaged her feet and hands. She spoke to her in endlessly gentle tones.  She was also fantastic with Roan.  At the end of the first day she said to me, "I know it must be so hard to take care of a sick child all the time so if you ever need a break you can call me any time and I will come and watch both of the kids for you for free".  I started sobbing. 

Last week I got a text from Nicky that her baby girl Faith was being admitted to the hospital.  Over the past couple of weeks Faith had stopped making eye contact and tracking and was making some odd involuntary movements.  Nicky started looking online for the symptoms and up popped infantile spasms. It turns out, of all the things in the world, that Faith started having infantile spasms, the same seizure episodes that Lula had. They are difficult even for doctors to pick up on but because the spasms had been so much on Nicky's radar with Lula she realized what was happening immediately and started hunting down neurologists.

Despite the fact that her 5 month old was having these sudden episodes she couldn't get a neurology appointment anywhere until mid January, which, if you know Nicky at all, wasn't going to cut it.  She managed to get Faith admitted to Beth Israel for a video EEG two days before Christmas and has been there ever since.   I went to visit them and Nicky was beating herself up over not picking up on the seizures sooner.  She only cared about not being at home for Christmas because of her family who clearly missed them both terribly.  

Faith is already responding well to the meds (the same as Lula, ACTH) but I know the next month or two are going to be hellish for Nicky.  The meds will make Faith blow up like a puffer fish and they will mess with her blood pressure and immune system, making her vulnerable to every germ and virus right in the middle of cold season.  But she has such a good chance of recovering fully from the spasms so it will be worth it. 

On my last visit Nicky said, "I knew there was a reason that I was sent to Lula but I just didn't know it until now" and I completely agree.  My pragmatic brain does not know what to make of this, but she is a guardian of sorts.  Faith is even more proof of how much purpose Lula's brief life had in this world. 

Faith - such a pretty girl.  I might add that the EEG team at Beth Israel does a much tidier gauze helmet than Lula had at Cornell.

21 December 2011


I think often of one of Lula's namesakes, my maternal great grandmother Tally Lula.  She and her husband had 12 children on a farm in Mississippi around the turn of the last century.  She lost 4 children, including 2 boys from a set of triplets who died two days apart at 18 months old. She likely had almost no support outside of her family.  The story goes that the two triplet boys died from being given bad medication by a drunk doctor.

I do not know how she coped with such an accumulation of tragedy.  I imagine that her children may have all survived if they had had the benefits that Lula had in her eighteen months.  I am sure that we would not have had Lula in our lives for as long as we did were it not for the astonishing network of support from Lula's many doctors, therapists, night nurses and babysitters.

We learned early on to be ruthless in our judgements of the people caring for Lula and we assembled an army of only the most devoted, honest, and attentive caregivers. We wound up hopscotching between between 5 different hospitals in 3 boroughs but it was always worth the extra effort.  I think in many ways the better a doctor you are the more the job takes a toll on you.  Truly gifted doctors cannot and do not remove their feelings from their work. 


Betty Keating - Bellevue Pediatric Nurse Practitioner
Relentless, devoted, a total force of nature.  Betty works only with kids with complex health issues, most of whom are also poor.  She helped us navigate the mind-blowingly complicated medical system and was the first person to tell us that we were entitled to night nurses and other help. 

Dr. Fiorino and Giusti - NYU Pulmonology
Both endlessly kind and patient with our frantic calls whenever Lula's breathing was labored.

Dr. Rickert - NYU ENT
Did the quickest scopes (where they put a camera in Lula's throat, which she did not enjoy) and the best dressed doctor she had.

Dr. Vo and Jackie LaMothe NP - Cornell Neurology
I think as a rule neurologists are not "people" people.  The previous neurologist made me feel like Lula was her science experiment, and also completely missed the presence of seizures. The neurology team at Cornell was a little overwhelming (there were 4 or 5 people coming in and out at every visit) but Dr. Vo and Jackie were always constants.  They always made us feel like Lula was worth trying to help.

Dr. Pappas - Bellevue Genetics
Dr. Pappas was the man who told us that Lula had demylenation and essentially would never be "normal".  I do not know how someone does that for a living.  He is brilliant but so gentle.

Dr. Davis - Cornell Genetics
Dr. Davis is currently growing Lula's cells so that scientists can try to figure out what genetic mutation caused Lula's condition.  She told us what a huge contribution to the world Lula was making by donating a tiny piece of herself.

Dr. Patton - Bellevue PICU
Bellevue is the red-headed stepchild to NYU in terms of money and equipment but you would never know it from the staff.  Dr. Patton and the PICU nurses were the definition of vigilant and fought to get us transferred to Cornell for Lula's final days.

Dr. Howell - Cornell PICU Attending
Dr. Howell had to help us decide not to intubate Lula.  She had to help us to understand how letting our baby die was the most caring and compassionate decision to make.  She was articulate and endlessly patient.  She had a certain maternal aura that made us trust her.

Dr. Phillips - Cornell PICU Fellow
Reminded me of the character Dill from To Kill a Mockingbird (the neighbor boy believed to be based on Truman Capote). His temperament was so far from the typical type-A trauma doctor. He was the man who guided us through the process of Lula's passing.  It was something he did with a heavy heart. Although he was utterly professional, he was not removed. He made sure that she was always comfortable and that we had as much time and space as we needed.

Dr. Millman - NY Hospital Queens Gastroenterology
Dr. Millman is the gold standard for how every doctor should be. She would spend upwards of an hour with us every time we came.  She was open minded to our thoughts (my wanting to experiment with blended foods) but clear on her opinions when needed.  She never resigned to anything inferior.  Last time we saw her she snuck us in to the ER because "if it's an emergency, why should you have to wait 4 hours?"
At an appointment several months ago I was setting up the feeding pump and Dr. Millman was holding Lula.  She was rocking her and talking to her and she said to me, "she makes me want to have another baby".  It was the most generous, wonderful thing that any doctor ever said to me. Lula was not just a cluster of problems, she was an enchanting spirit and Dr. Millman was able to see that.

19 December 2011


For those of you who believe that the art of letter writing is dead, let me tell you that you are wrong. We have been inundated with cards and letters from all over, some from people we haven't seen in years and years. They are all so thoughtful and heartfelt; even the grammar and penmanship are beautiful. It's as though my mother edited them all before they were sent (my mother was maniacal about thank you note writing when I was growing up).  Miss manners would be so proud of every one of them.

By far the most unusual one was from my friend Cecelia.  It is a heartbreakingly personal and sincere letter from my oldest friend, and it immediately made me cry, but it also made me immediately laugh.  It was definitely an interesting choice, one that I believe may be a new market in bereavement cards for the future.  We gave gave it to Roan in hopes that he will wear out the batteries.

(make sure your sound is turned up)

16 December 2011


We have been filled with love this week from our friends, and that love has in large part come in the form of delicious food. It's set to continue for the next month, by which time I think we will have sampled food from every culture imaginable.

Monday Dave and Jess brought heaps of Dominican rice, beans, and roast chicken.  Tuesday Lucy and Georgia dropped off Korean food - kim chee, rice, some kind of amazing marinated beef, and miso soup. Wednesday Forest and Jordan made chicken curry and brought an array of One Girl cookies.  And yesterday Aggie brought us a polish feast - beets, sour kraut, mashed potatoes and mountains of pierogis, finished off with cannolis courtesy of Sharda.  It's been a world tour of cuisine, and not really by design; it's just a testament to the worldliness of our friends.  Although I do think there is just a touch of competition going on.

The best part has been the company. The continuous socializing and celebrating has kept me very much out of my own head and connected with people.  It's sort of exhausting but in a good way.  It's kept me from my natural inclination, which would be to curl up on the couch and watch endless reruns of Hoarders and Cops. And the thing is, all of these people have been so involved in our lives, making such effort to stay connected to us for all those months that we were virtually housebound.  They all knew Lula too, and they all have their own grief to process. 

Tonight we are taking a break and I am going out with the ladies while the dads are coming here with the kids. We have enough leftovers to keep us well traveled for days. 

14 December 2011


Last night I received an online order that I placed a couple of weeks ago with Christmas presents for the kids.  For Lula I bought a reversible cotton summer dress with hippos and giraffes on it and black and white striped leggings.  They are adorable and so hard to look at.

I am constantly trying to override reflexes.  The instinct to covet girly things that I no longer need.  Again, it's somehow the things that are oddly hard to cope with.

Someone asked me in the park this morning if I thought Roan missed Lula and I had to say "no".  I really, truly don't think he perceives her as being gone.  I think she is still with him in a way that us as adults and not her twin are incapable of knowing.  This could be wishful thinking or bullshit.  My imagining that Lula has magically been folded into her twin brother is a tremendous comfort.  But I also think that Lula's presence was never something entirely physical to him.  She was always, and still is, just that, a presence.

I am going to give the hippo dress and the leggings to another little girl and I hope that I can find a way to enjoy seeing her wear them. 

13 December 2011


What would we do without moments like this?  Thanks Uncle Will

12 December 2011


So now the pain begins.  It comes in sudden, urgent pulses.  It is akin, I would imagine, to heroin withdrawl, a tugging in the veins that takes your breath away.

I find myself fixated with the things that I use in my house.  When I started using the bottle of bottle of shampoo in my bathroom Lula was alive.  The hands I used to wash my hair I used to hold my baby.  When I use up this bottle of shampoo somehow I will be losing a tenuous connection between the time that Lula was alive and the time now that she is gone.  Everything that existed when she was here is a thread to her that I am scared to sever.  I am scared to use up the mustard.  I held the box of baby oatmeal to my forehead for minutes, thinking of her daily ritual of feeding therapy with oatmeal and cinnamon. I am trying to let go of all of the reminders around the house because they ricochet like a slingshot whenever I touch them.

One of my closest friends passed away suddenly several years ago.  At the time I remember wondering how her mom would ever survive it.  Her mom sent me a letter this week that, among many wrenching insights, said this:

"When the life we wanted gets ripped away from us we have to come to terms with the irrefutable fact that everything we love is impermanent."

I am trying my hardest not to anchor my memory of her in things because their permanence is exactly what separates them from her essential spirit.  I am trying.

Half eaten lollipop from Lula's feeding therapy.  For now it stays.


I have always always felt lucky to have the most generous, loyal, remarkable friends, but until something like this happens you rarely get to witness the lengths your friends are willing to go for you.

One of my oldest friends, Cecelia, has been incredible.  We have been what I can only describe as soulmates since we were eight years old.  She has organized a food calendar so that we have one friend or other delivering dinner to us almost every single night for the next month.

We are the luckiest people in the unluckiest of circumstances.

11 December 2011


We had a bonfire after the memorial service and drank whiskey and sang songs and raised our sparklers in the air.

Photo by Jake Wallace



Once I knew a girl and her name was Lula
She was sweeter than a petunia
She rode to school on a zebra
And back home on a kangaroo.

Everyday she dressed like a princess
She carried her magic in a suitcase
She could turn a grey sky blue
and thistles into candy.

So if you see Lula, tell her I miss her so
Tell her to write me a letter or call me on the phone.

Lula could be as tall as a pine tree
she could be as tiny as a flea
She could roar as loud as thunder
or quiet as a rainbow.

She could run as fast as a jackrabbit
She could fly as high as a bird
Such a little girl with her heart opened wide
and her arms around the world.

So if you see Lula, tell her I miss her so
Tell her to write me a letter or call me on the phone.

Lula, she had the face of an angel
But Lula she had a devilish side
She could be tricky and a bit of a rascal
But only once in a while.

Last time I saw Lula, she was holding a flower
and dancing a jig all around the room
with a kiss and a wink and a fiddledy-dee
she vanished into starlight.

So if you see Lula, tell her I miss her so
Tell Her to write me a letter or call me on the phone.

-New Raspberry Bandits


Many thanks to our dear friend Will Adams who was put to work making this slideshow moments after he arrived from Glasgow.  Also thanks to the New Raspberry Bandits who very kindly sent us a copy of their magical song Lula.


The memorial service for Lula yesterday was an absolutely amazing experience. We are still drinking in all of the love and support.  We had people from all aspects of our lives, from every point in our lives.  I have never been so full of admiration for the human race.

We are so grateful to Catherine at the Brooklyn Society for Ethical Culture, who led the service and who was kind and reassuring through every moment of planning.  She completely understood everything we wanted to convey and helped us to make it happen.

We had eight readers who could not have captured Lula's essence and the impact she had on all of us more perfectly. They were all so poised and thoughtful and wonderful. I am especially indebted to my friend Sharda who lent her amazing voice to me.  I knew I wouldn't be able to speak and she was able to deliver my feelings better than I ever could.


My name is Susan Walker and I am Lula’s grandmother.  I will always be Lula’s grandmother, just as all of you will always keep your relationship with Lula.  I am also a nurse and so have seen my share of deaths in my chosen profession.  I have no great insight into death, but here is what I know; when someone dies, the light changes.  Look around you; every person in this room, this world, carries their own light.  Lula was a little girl and carried a little light, but it shone brightly and fiercely.  That light doesn’t disappear, it is released.  It moves into our hearts and lives there, it soars into a welcoming universe.

I want to talk about the beginning, because another thing I know is that every parent in this room remembers their pregnancy, the birth, and the first time they looked into their newborn’s face.  My own words were inadequate, so I found a poem by Maureen Hawkins that encompasses, for me, the wonder, joy and complete surrender to the new baby.  It’s called, THE MIRACLE, and it’s about the honor of love.

    Before you were conceived
    I wanted you
    Before you were born
    I loved you
    Before you were here for an hour
    I would die for you
    This is the miracle of life.
    The pain, so great,
    Was more than the throbbing of your final journey
    Into my love
    But part of a process
    That came accompanied with
    New Life
    New Consciousness
    New Understanding
    New Wisdom
    A bigger heart
    New Love
    At last Liberation
    At last Freedom
    How special, how valuable
    How close to all things right
    Nine months of worry and expectation
    Brought more than imagination can conjure
    Never really knew until…
    I feel you coming
    I am ready for you
    I am ready for life
    I am rejuvenated
    I am Blessed
    With the gift of life.

It has been my very great privilege to be part of Lula’s life in my extraordinary family.  We have all been truly blessed with each other and with the loving friends who surround us.


The first time I held Lula I was transported back to holding Felix when he was a baby.  I had never held a baby who was as floppy as Felix before. And Felix, back then, also had red hair. I held her, thinking of Felix. Then she opened her eyes. They blasted into me.   She was not Felix.  She was very much her own self.

The experience of knowing her was immediate and deep.  She connected to me like this: hand and fist.


Back in the days when I didn’t know much about disability, the idea of living without being able to talk, swallow, barely move was so unbearably cruel, that I felt that the heart should just stop beating. Life would be torturous and not worth living.   But I didn’t know people like Lula then. Her life was not all torture.  And very much worth living. She was stripped of what almost everyone in this world takes for granted, and yet there she was, loving and being loved, connecting with people and the world around her as powerfully or perhaps even more powerfully than those of us with more conventional gifts.

Sam and Micaela very generously asked their friends and family to give donations in her honor to the community center for families with children with disabilities that I am helping to build, and because of this we have been receiving donations from all over the country and all over the world. Attached to these have come very touching notes speaking to the grief and sorrow and love that people all around the world feel for Lula.

This of course is a testament not only to Lula, but also her parents, who loved and celebrated her and did everything they possibly could to make her life as good as it was.  Who are an inspiration and comfort to me, and who I would not have known without Lula.

In the words of my grandmother, who can no longer speak, but who, when she could speak was a great one with words,   Lula was  a “rare creature.”  It was my grandmother’s phrase for people she particularly loved.  Lula was a rare creature. I am grateful to her for teaching me, perhaps more strongly then ever before, how connected we all are.


Nothing Gold Can Stay

Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

- Robert Frost


Hi—I’m Micaela’s Dad and Roan and Lula’s Granddad.
    •     As parents we have special protective feelings about our children.  Especially when they are young, or sick.  Micaela and Sam have had the benefit of this particular emotion for the last 18 months.
    •     When we learned that our grandchild, Lula, had profound disabilities we knew Micaela and Sam would be worried about her but, as parents, we were worried about them.
    •    Would they be able to cope?  How would the stress affect them and their marriage?  In my mind I had complete confidence in Micaela and Sam’s abilities to cope but in my gut I was worried.  My mind told me one thing but my gut told me another.
There were three things that helped me:
    •    First, when we told friends about Lula’s disabilities, we could see that they thought it was an unremitting tragedy.  But that wasn’t how we felt.  One time my wife, Carolyn, surprised me by saying, “You know, viewed from Lula’s perspective, in some ways she lucked out.  She couldn’t have had more wonderful parents or a more wonderful family”.
    •    Second, in this sort of situation you worry that the parents – in this case, our children --- will burden themselves with unrealistic ideas about what they can control and are responsible for. Maybe they can find a magic cure, a super pill or a revolutionary therapy.  But I realized that they were far ahead of me when Micaela said “Lula is who Lula is meant to be and we love her”.
     •     And finally, we were all worried about the strain that being house bound put on the entire family, including Gracie.   Last summer, Susan, Micaela’s mother, realized there would be no vacation for them this year. She suggested that Micaela, Sam and Roan make a weekend trip to visit their cousins in Philadelphia while she watched Lula.  It was a generous offer but Micaela and Sam declined it.  They said, thanks but when we make a family trip we take the entire family --- and that includes Lula.  But Susan’s offer got them thinking.  And, thanks to this thinking, Lula’s short life included a trip to a petting zoo where she fed a pig, a trip to the beach where she loved feeling the breeze on her face, apple picking and, at Halloween, a pumpkin patch.  All essential elements of an American childhood that Lula was able to experience too. The pictures and videos of these trips are truly inspiring.  When watching one of them I no longer had that awful feeling in my gut.  I knew our kids would be OK.
Lula taught us so much and we will miss her.    


Hello everyone. It's an honor to be standing in front of such an amazing crowd. Lula really did know how to curate some of the best groups of people didn't she? I was not going to get up in front of you today as I have only been to two of these in my entire life. But I realized that Lula shared something extremely similar with another person whom I hold very dear to my heart. At the opposite life span spectrum, she is someone who has inspired me for decades. That person is my grandmother. 29 years ago, I was faced with the first funeral I would ever attend. It was for my great grandfather who would have turned 92 that year. As we sat at the gravesite, my grandmother sat next to me in the chair across from the tombstone and she said 'It's a shame that they only put the date they were born and the date they died, separated only by a dash. How could you possibly put all that life into one little dash? Promise me that you will make your dash spectacular.'

My grandmother is still with us and I continue to be inspired by her. And it is with this,  that I was able to see such a spectacular dash in you Lula. What you did in 18 months is a far cry from what it takes entire lifetimes for some. Your determination, will power, strength and patience was fueled by the love and support that surrounded you. You, along with your brother Roan, could not have been born into a better family. What I have seen in Sam and Micaela in the last 18 months has been heartbreaking and breathtaking at the same time. For parents who have only been doing this for 18 months, I can't even begin to express how amazed and proud I am to call them my friends. I can only image how proud you are to call them your mom and dad. You touched so many hearts, brought families closer and will forever be side by side with Roan. What the caterpillar perceives is the end, to the butterfly is just the beginning. I am forever grateful to have been graced and inspired by such a beautiful little force. Albeit brief, your dash is spectacular Lula.


Dear Lula,

I couldn’t wait to meet you when your mom and dad were finally able to bring you home from the hospital. I fell instantly and madly head over heals in love with you. I knew you weren’t MY little Lula-bean but it didn’t matter. I was hooked. I would find every excuse possible to stop by your house during the week and on weekends. I would tell your mom and dad that I wanted to stop by to visit them when in reality it was you I wanted to see and hold in my arms.

We became fast friends you and me.

The last time I got to hold you, we were by the lake in Prospect Park. Roan and your dad were watching the geese swim around. Your mom was taking photos. I held you and we looked out at the water. The breeze picked up and it blew through your hair. Your eyes popped wide open. I kept turning you towards the wind. You sighed in utter peace and contentment. I will hold that moment and memory deep in my heart always.

Thank you for coming into our lives little Lula-bean.

Thank you for allowing us to love you.

Thank you for showing us what it means to live a meaningful life filled with love, struggles, fierce determination and complete and utter joy.

I will love and miss you for all eternity.

Auntie Aggie


Recently, Micaela and I were asked how long we had been close, to which we both replied “always”.  When you’re born, your world starts small and gets progressively larger throughout your life.  When my world was just our home, Micaela taught me about unconditional love.  Aside from spending countless hours reading to me, playing in the park and tucking me in to bed, she made it clear that no matter how much I drove her crazy, she would always be there.

As my world got larger Micaela introduced me to a second type of love, the love of female friends.  Micaela has always surrounded herself with the most amazing women I have the privilege of knowing.  These women have taught me the importance of brunch, long phone calls and that true friends will always be there when you need them and true to form, they are all here today.

When Micaela brought Sam home for the first time, everyone instantly loved him.  Not only because he’s great but because of the way he treated Micaela and the happiness her brought to her face.  Through their respect and love for each other they taught me that the ever elusive, true love is a possibility.

The most recent type of love Micaela and Sam have taught me about is the love they have for their children.  In every thought and action they put Roan and Lula first.  The past two years have been a whirlwind and every decision they have made has been with their children’s best interest in mind.  It is with this selflessness that Micaela and Sam traded their own sorrow for Lula’s peace.

Lula experienced and witnessed all of these types of love in her eighteen months here and I know that as Roan’s world gets bigger he will have the good fortune of learning about love from his parents, just as I did.

I would like to leave you with a quote from C.S. Lewis which reminds us to keep ourselves available to love.

“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”


The twins were due on my birthday, June 21st, the summer solstice. Throughout the pregnancy Sam and I resisted finding out the genders, but I knew I desperately wanted a girl. We had weekly sonograms in the third trimester and each time I reminded the technician; don’t tell us the genders.  One day she let it slip: baby B was a girl.  My heart was full.

They were born on June 11, 2010, the day after our fourth wedding anniversary.  Roan Douglas Walker Murray at 11:37am, Lula Neave Walker Murray two minutes later.  Roan and Neave are both islands off the north coast of Scotland, an inspired place that we both love.  Lula was my maternal great grandmother and as I learned later, my paternal great grandmother as well. Roan burst out with a scream, but Lula was silent.

We never had a moment when we believed that Lula was healthy.  From the first day an avalanche of mystery symptoms and deficiencies were piled on us by specialists; global developmental delay, hypotonia, poor eating reflexes, weak vocal chords, failure to thrive.  But in her own complicated way she was utter perfection. She was sea green eyes and the softest skin imaginable.

Despite her catastrophically uncooperative body, Lula’s spirit emanated. She found a way to connect with all of us without any of the conventions of communication that we all take for granted. She couldn’t smile, cry, laugh, she couldn’t even hold her head up. But she was a brilliant little girl; she insisted on being held nearly 24 hours a day for her entire life. When you held her you couldn’t help but feel her very essence pouring through her skin. She oozed love through her pores to anyone lucky enough to hold her.

In eighteen months Lula was able to teach us everything that eluded us during a lifetime of conventional living. There is only one thing that means anything in this universe and that is love.  There is no cause, job, accomplishment, or goal greater than to love and to be loved, to care for the people closest to you.  Her needs and complexities stripped us of all the artifice of a life without meaning. She struggled to survive for eighteen months, through endless deficiencies, illnesses, procedures, tests, and hospital stays until she knew that we understood what she wanted us to know.

In the end the greatest gesture of love that we could return to her enchanting spirit was to release it from the beautiful but broken vessel that was her body.  Lula died on December 4th, my grandmothers birthday. We were able to hold her, bathe her, kiss her, and rock her without the tubes, wires, machines, or needles. Losing Lula is a pain of withdrawal that has reset our heartbeats, that is only survivable because we have been engulfed in overwhelming love from friends and family. She has gifted her twin brother Roan with an ethereal sidekick who will be with him always. She has given us an indelible legacy. In the blink of an eye she has managed to reinvent us all.

07 December 2011

How can someone write a perfect song for a magical little girl they have never met?  I do not know, but this band has done it. 

by the New Raspberry Bandits

06 December 2011


Celebrate the extraordinary life of


Saturday, December 10, 2011

Brooklyn Society for Ethical Culture
53 Prospect Park West, Brooklyn, NY 11215

All are welcome, including children 

In lieu of flowers or food we would love you to make a donation in Lula's name to Extreme Kids and Crew:

04 December 2011


In lieu of flowers or food we would love you to make a donation in Lula's name to Extreme Kids and Crew:


 Lula Neave Walker Murray passed away peacefully in her sleep December 4 at 12:55am.  She was in her mothers arms in a rocking chair overlooking the East River, surrounded by her father, Grandpa Terry and Aunt Caitlin, and listening to Ella Fitzgerald.  She was a gift that we had the pleasure of having in our lives for 18 months. She truly had a village to care for her and many of you were an integral part in helping her in her very challenging life. We are immensely grateful for all of the love and support that you all gave to her and to us.


01 December 2011


It has been a week of life and death, and will continue to be for some time. Lula has contracted RSV and has been in the hospital since Saturday. What we thought was going to be another respiratory infection has turned into a near death illness.

In addition to RSV and pneumonia at several points Lula had what appeared to be several severe seizures. By Monday her pupils were 2 different sizes which is commonly a sign of catastrophic brain damage. When Sam and I arrived she was having difficulty breathing even with a BiPap mask on. The next step if she couldn't maintain her O2 levels is Intubation. It is the most painful moment of my life. Sam and I agreed that we did not want to intubate her, that this beautiful little girl had fought harder than we ever could have asked and that it wasn't fair or right to force her to stay alive. We signed the papers for DNR and DNI. I could barely hold the pen.

They managed to stabilize her breathing on the bipap. Sam and I stayed with her in the ICU that night, thinking it might be her last night. Somehow we slept a little. The Bellevue ICU is small and basic. It has the pallor of a public school and did not even have the ability to perform an EEG. But the staff was remarkable, attentive, warm, caring, incredibly thorough. We didn't really want to leave but lula needed an EEG so after some political wrangling between attendings she was transferred to Cornell where we have been ever since.

That night I went home with a palpable, indelible pain that not even Roans charming antics could temper. I began to see how empty our lives would be without Lula. As crowded and overwhelming as her schedule is, it has created a rhythm that we all live by. Once Roan was asleep I had nothing to do. One dinner, one bath, one bedtime felt so empty. We would no longer need my mom to stay over two nights a week. There would be no night nurse, no endless stream of therapists and meds and doctors appointments. We never wanted any of it, we only ever wanted two healthy children, but Lula has created an extraordinary life for all of us. I have never been so aware of her immense influence.

I woke up the next morning to the thought, once again, of our lives without Lula. Would I still say I have twins? Would Roan remember her? Would he always feel her presence, having lived intertwined with her for 9 months in utero?

Amazingly when I spoke to Sam a short time later the EEG results looked good. She was not having seizures. The CT scan had shown nothing to indicate brain swelling or bleeding. Her pupils were reacting and although uneven they had actually switched so the one that had been smaller was now bigger. She has utterly baffled the doctors with this. I am so glad that we did not intubate her because I know that Lula has chosen to fight to be here. We are helping her in every way we can but we are not doing it for her.

She is still critically ill but the RSV and the pneumonia are things that she can overcome. If she does get through this, however, she will still be Lula with all of her deficiencies and weaknesses and conditions. She will be vulnerable to this for the rest of her life and we all have to live here with her on the precipice of life and death as long as she chooses to be here with us.
Right now she is peaceful and calm. She is hooked up to so many things I can't really pick her up. Now we wait and see. We are taking things one day at a time.

27 November 2011


The strangeness of my day-to-day life is masked as normal through unending repetition until I have a moment like this: I was on my way out the door to a yoga class, the first in six months or so, when the doctor I had paged earlier in the day called back. Lula spat up some brown mystery gunk overnight and it showed up in her residuals (basically her stomach contents back up through her g-tube into a large syringe- not for the squeamish) so I called the GI for her thoughts. She wanted to see Lula before Thanksgiving so she thought it best that I take her to the ER in Queens that day. I said ok, hung up, and went to yoga.

This is not what most people do, is it? A doctor says your child needs to go to the ER and you go to yoga first? It's not that I was ignoring any urgency-the doctor didn't want to see her until the afternoon- it's the fact that I was able to detach enough from the situation to go to yoga.  One thing I've never been good at is compartmentalizing my life, but when everything is an emergency it's awkward finding ways to fit the rest of your life amid the crises. I find myself vacillating between and abundance of panic and an eerie indifference towards the same recurring events.  That day was a day for indifference, or not so much indifference, but distance.

Yesterday we were again in the ER. This time Bellevue, this time for labored breathing. Friday night we had to put Lula on oxygen because she was wheezing and pulling her breath in an out as though she were breathing through a straw, but I fell asleep fine and slept hard. I have moved beyond being kept up with worry and into sleeping deeply to escape it. I woke up feeling jarred knowing we were not going to have the Saturday we had hoped for, so I had coffee and cereal, read about a baby who was rescued from a fire on Thanksgiving in the paper and then called the pulmonologist.

The Bellevue ER was great, and I was the polar opposite of my last time at Bellevue. I let the events wash over me and made little attempt to control anything.  It was an extremely quiet day and the staff was fantastic and patient and thoughtful.  I mostly sat holding Lu and then my friend Sharda came by for a visit - it is a true friend indeed who gives up a lovely Saturday afternoon to sit in the windowless Peds ER holding a sick baby.

They kept her overnight, and best of all they allowed us to have our night nurse come and stay with her.  This was a huge advance for us because the night shift in the hospital is hell if you need to get any sleep at all. Our night nurse Beverly is tireless, attentive, a bit OCD (in a good way) and knows Lula better than we do during the night.  She came to relieve m at 10:30 and immediately started rearranging things.  She made Lula a nest from blankets and sheets and got her settled.  I never thought I would be able to leave my baby in the hospital but I am coming to terms with the fact that raising Lula really is going to take a village, and that I am going to have to be OK with some self preservation at the expense of being with Lula all the time.

Sam is with her today and she is doing really well. Sleeping and peaceful.  Hopefully she will be home tomorrow.


24 November 2011


It seems unbelievable that a year ago today Roan tried his very first solid food - sweet potatoes, no less.  You can see Sam giving Lula a bottle in the background.  This year she's having sweet potatoes too.

21 November 2011


Roan is deeply in the throes of the imitation phase of toddlerhood.  He is rapidly absorbing and then repeating everything that we all do.  It's a bit like having a small, spastic mirror around and it's a bit intimidating.  For one thing, Roan's obsession with sweeping has expanded into a full blown Joan Crawford style cleaning frenzy.  At every opportunity he is wiping down the baseboards or scrubbing the top of his highchair.  In the bathtub I gave him a washcloth with soap and instead of washing himself he began polishing the tiles. 

Clearly he has picked this up from us adults, and it does feel like we are all cleaning, washing, or folding something eternally, but if this were true then why does our house look like a yard sale most of the time?

19 November 2011


Talk about adding insult to injury: among the many side effects that the ACTH has had on Lula (fatigue, elevated blood pressure, irritability, being stabbed with a needle every day) Lula's face has suffered the full wrath of the steroids.  She's puffed up so much her cheeks look like two water balloons, and there's a constellation of acne between her brows. 


Cheeky McPuffypants

We have started titering her down off the ACTH so she will be completely free of it by December 2.  The puffiness should recede along with the other side effects.  Then we wait and see if all this misery was worth it.

16 November 2011


It was a little surreal around here last week.  We had a commercial for Garnier filming upstairs and it took over the whole block. The streets were cleared of cars and overtaken with tents, lights, cables and very busy people. Our neighbors were ready to mutiny.  Our poor landlords were blindsided by the scale of it all. 

Monday morning they started at 4am.  At 6am I marched up in my robe and slippers and told them to stop talking or they would wake up my kids.  I was SO tempted to dump Roan on them when he woke up at 6:30. While it was grey and raining all day outside, inside it was sunny California all day. It kind of messed with our heads.

Photo Courtesy Sam

Sam's mom was staying on the top floor in our landlords spare room and had to weave her way through the mayhem every day.  She was a good sport about it, willing to put up with smarmy production assistants so she could get her hands on her grandkids.

Monday through Wednesday we had my mother AND Sam's mother staying with us (I will pause here for full effect).  For some reason when we get them together they sing a lot. This time it was Teddy Bear's picnic.  They also conspired to buy Roan a scooter and even managed to take the kids to the diner.

We all had a lovely time.  Joss got to indulge the kids, Sam got to catch up with his mom and I got to take some time to myself.  Everyone wins!!  Joss is so enamored with the babies.  Here she is with Sam and the kids and I think her face says it all (either that or she's really enjoying "No Bed without Ted").


Me and Roan

13 November 2011


Continuing our marathon of grandparents, Granny Joss arrived on the day that my dad and stepmom left.

I always seem to realize too late that I am burned out, like an overtired child who hasn't napped.  I've been in a foul mood, overwhelmed and exhausted and fed up with everything. Luckily I have been able to basically take the last 3 days off and be a very backseat parent.  Joss and Sam and a series of sitters have all but taken over.  I got my hair done, went to happy hour, and had an all afternoon Mimosa brunch with my oldest and dearest friends.  I feel restored.

Unfortunately it wasn't so great for everyone else, especially Sam.  Both kids have come down with some virus that has led to extremely unpleasant diaper changes and projectile vomiting.  I am so glad I skipped out on this one :)

10 November 2011


I do not understand how anyone can have Munchausenby-proxy syndrome.  How can having a sick child make anyone feel like they are getting more attention?  I don't know of anything that makes me feel invisible, my time expendable, and my value as a mother reduced to nursemaid more than being around doctors.

Of all the indignities, frustrations, complications etc that Lula's complex web of medical support entails, nothing makes me lose my shit more than being made to wait for hours while being told nothing.  I am so tapped out, my wait time reserves long ago used up, that I am reduced to tears at any appointment where I have to wait more than an hour.

Thursday Lula was meant to have 2 appointments at Bellevue, one with her PNP (like a pediatrician) and one with the Orthopedist.  We arrived at 9:30am. I was told to get an ETA from Ortho and if it was going to be a while her PNP would see us first.  After 20 minutes at Ortho I was told Lula was the next patient so we should stay put.  Over an hour later and there we still were.  I started to get irritated.

The receptionist had the listless pallor of someone who hates their job and no doctors were reachable.  Finally another 20 minutes later I got an answer:  Lula was the next patient.  Still.  It was nearly noon. Lula was supposed to be home for a feed by 12:30pm and I had a phone conference scheduled for 1:30.  We had been there for 2 and a half hours and still hadn't seen anyone. 

The senior resident came out to say "yeah, sorry, things are backed up today" as though it wasn't like this every single day.  At that point I was livid.  Finally her PNP came down to the Ortho office to see what was going on.  She was more concerned that I was being difficult than why I was being difficult. Her response was, well this is what it's like and you should expect to wait for however long they want you to. This is the way it is.

Why should I expect this?  I have no idea what their reasoning is but if one of them was expected to, say, wait 3 hours to check out at the grocery store or 3 hours to go through the Lincoln Tunnel or 3 hours to buy golf clubs I think they might object.  It's not a matter of medicine, it's just bad manners. 

I can't tell you why exactly, of all the stress in my life this is the thing I truly cannot handle, but I think it is the helpless wasted time that gets to me.  Lula's (and therefore my) life is scheduled within half hour increments pretty much 24 hours a day.  I go to great lengths to maximize the miniscule amount of time she has each day to go to the park or when I can possibly do laundry or cook or run errands that to spend 3 whole unplanned hours sitting in an office where I can't even get phone reception makes me feel a bit like my life has been hijacked.  If I had 3 hours to do what I wanted with it would never be this.

By the time the doctor came in I was beside myself, bitter and full of tears.  She said something about how important it was that she see each and every patient as long as they needed and then proceeded to spend less than 5 minutes with us.  She said, "so tell me what's been going on with Lula?"  and I could tell that she absolutely could not remember Lula at all and hadn't even looked at her chart before the resident pulled it up on the computer.  I told her that Lula's physical therapist had requested supportive braces and she said we could get those and then she sent us to have casts made.  The guy doing the casts looked at my puffy eyes and said "tough day, huh" and I said "every day".  He spent more time with us than the doctor did.  We had a hurried meeting with her PNP, which I wound up having to finish on the phone later. 

I look around at the herds of other people who are there and I am amazed that there isn't a mutiny.  Either I am the most high maintenance mother ever and they have all studied Zen meditation, or they are all resigned to a life of waiting rooms. They aren't even reading magazines, they just stare blankly.  Their kids sit contorted in special wheelchairs and groan and drool. There is no anger but there is no joy either.  Everyone seems numb and that scares me, but I'm sure the doctors prefer it.

I don't want to be numb.  I don't want to be OK with other people wasting my time.  Therefore I am going to keep looking for another doctor for Lula until I am satisfied, or at least not miserable.

09 November 2011


Just ended another visit from my dad and stepmom, over from London for a week.

On arrival the first words out of their mouths are always, "what can we do to help?" Despite being very much out of practice, they always jump right in - or not so much jump since their knees aren't what they used to be - they sidle right in and do anything that needs doing. Cam followed Roan as he tottered around the playground and even helped give him a bath.  I have managed to pull out my back so my dad offered to wear Lula to the park and do all the heavy lifting. 

Dad and Roan at the top of the slide at Brooklyn Bridge Park

Modern day Gramps


07 November 2011


A few new positive updates on Lula:

She had a follow-up EEG on Friday (with a really irritating tech who kept telling me to "hold her head still" while he tried to put the electrodes on her.  How are you supposed to stop someone from moving their head??) that the neurologist was really pleased with so she has gone down to one dose of ACTH per day. We are having the night nurses do it so we have one less medical task to do ourselves.

Today Lula, mom, and I went to the gastroenterologist. Lula got a new g-tube, which was just in time because the old one was looking like something that might have been fashioned from the junk yard on Sanford and Sons. The plug had broken off so Sam had ingeniously made a plug from an old feeding tube but that started to leak so he plugged the end of something else in that.  Plus the hair clip clamp to keep it all in place made it look like a hot mess.  The new one isn't as flat to her skin but it locks and is much nicer.  The only caveat from the doctor was that it could pop out of her stomach more easily, and much like an earring hole you have to shove something in it ASAP to keep it from closing up.  I am completely impervious to any of this by now, thankfully.

The doctor also decided to give her less food. She has gained so much weight  (she is now 19 pounds!) that they are thinking she doesn't need as much as she is getting and are reducing her to 6 feeds a day from 7.  This may actually solve so many issues that we have and that especially the night nurses have with her being fussy, gassy, and uncomfortable after feedings.  Plus I have more recipes to try with the blended foods now.

We were in an out of there in an hour and a half, so mom and I had some celebratory bubble tea (we were in Flushing) before heading back.

Lula and Sam crashed out on the sofa later, both having had quite a day.

05 November 2011


First off let me say that the term "blenderized food" I find slightly irritating.  It sounds too much like slenderized, or jazzersize or some other 80's fad that involves a leotard.  Aside from that, however, I think it's a great idea.  Basically it's making real, normal, human food and then blending it very finely, adding water, and feeding it through a feeding tube.  Most people who have feeding tubes subsist on bottled formulas whose ingredients look alarmingly similar to a can of Coke (corn maltodextrin is like the third ingredient), so replacing at least some meals with homemade food is not only better for them, but makes the whole process seem a little less medicinal and impersonal.

I have been wanting to take a stab at the blenderized diet for some time but one thing or another always took precedence over it. Finally I made my first batch this week.  It has to be the blandest recipe in the universe:

1 oz carrot
1/2 oz chicken breast
1/2 oz cooked pasta
1/2 tsp olive oil

Steam and blend ad infinitum.  Add water to nectar consistency.

I still have some confusion over the quantities.  I'm used to everything with Lula's food being down to the milliliter but this is a bit more vague.  Then again I have no idea how many milliliters of food Roan eats every day, which makes me realize how much I actually rely on Roan to tell me what he needs.

I gave Lula her first blended meal today and she was absolutely fine. For the time being she will get one feed a day of the blended food and we will gradually increase the frequency over time. I have already bought a blended food cookbook which I am eager to test out.


He didn't actually eat any candy, but Lula got to try a Laffy Taffy and loved it.

Spider baskets courtesy of Grandma Cam and Gramps

31 October 2011


If you haven't figured it out yet I absolutely love Halloween.  I think it should be a national holiday devoted to imagination and creativity.  I think there should be a law that you have to make your own costume and that it preferably be creepy.

Fort Greene is perfect for me because I am not alone in my over-the-top adoration of this holiest of days.  There were block parties everywhere and hordes of people milling about in costume. One house creates an entire stage production every year complete with sets and elaborate costumes. Lula was surprisingly cooperative in her Bride of Frankenstein hair helmet and Roan made his own costume at lunch.  Halloween is awesome.

Roan making his costume

Beet killer

Bride of Frankenstein

Me and Lula

As usual our attempt at a group photo was a failure

Roan and Sam

Clinton Ave Halloween Extravaganza

Our neighbor Claire as cotton candy!