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:
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:
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
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.
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
And this was after spiking a brief fever of 104.7 and giving everyone a heart attack (again).
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.
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.
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?!
In other fashion statements, Roan wore his daddy's old t-shirt.
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| 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?!
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| Add caption |
In other fashion statements, Roan wore his daddy's old t-shirt.
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| Ahoy! |
TRICK OF THE DAY /
GI JANE /
We had a very good appt with Lula's gastroenterologist today. Lula is now 14 pounds 8.5 ounces and I can't remember what height but Dr. Millman actually described it as a growth spurt! She's still below the growth curve, but less below it. She's been spitting up so much less in the past 6 weeks or so and I guess it's all gone straight to her hips.
Let me wax admiringly on Dr. Millman for a moment. I can't imagine that too many people who spend half a million dollars on medical school are too jazzed about the idea of being glorified plumbers (she herself even says that in order to be a GI you have to love poop!) but she is so utterly brilliant and dedicated. She had a medical student with her today who asked her what test was best to determine if a patient has dysmotility and her answer was "a really good and thorough history", meaning the best test was to sit down and talk with the patient about their health problems in great detail, and the medical student was like "wow, I've never heard any other doctor say that before". And honestly this is truly the difference. We spend about an hour with her going through every detail of Lula's GI issues every six weeks or so. She emails me links to support groups, listens to me bitch about the G-tube, and humors me when I ask for organic vitamins. She's encouraging and optimistic without sugar-coating anything. When she disagrees with something another doctor says regarding Lula she is so articulate in explaining why and I usually think she's right.
She was actually late to our appointment today because she was up in pediatrics getting her ankle bandaged up. When I asked her what happened to her ankle she said that all 5 foot 1 inches of her got a little carried away playing basketball yesterday and she sprained it. Somehow, that made me like her even more.
We are going to start Lula on a new food regimen over the next couple of weeks which will hopefully give us more time during the day to leave the house and will also give Lula a chance to feel hungry and therefore want to eat more by mouth. Wish us luck!
Let me wax admiringly on Dr. Millman for a moment. I can't imagine that too many people who spend half a million dollars on medical school are too jazzed about the idea of being glorified plumbers (she herself even says that in order to be a GI you have to love poop!) but she is so utterly brilliant and dedicated. She had a medical student with her today who asked her what test was best to determine if a patient has dysmotility and her answer was "a really good and thorough history", meaning the best test was to sit down and talk with the patient about their health problems in great detail, and the medical student was like "wow, I've never heard any other doctor say that before". And honestly this is truly the difference. We spend about an hour with her going through every detail of Lula's GI issues every six weeks or so. She emails me links to support groups, listens to me bitch about the G-tube, and humors me when I ask for organic vitamins. She's encouraging and optimistic without sugar-coating anything. When she disagrees with something another doctor says regarding Lula she is so articulate in explaining why and I usually think she's right.
She was actually late to our appointment today because she was up in pediatrics getting her ankle bandaged up. When I asked her what happened to her ankle she said that all 5 foot 1 inches of her got a little carried away playing basketball yesterday and she sprained it. Somehow, that made me like her even more.
We are going to start Lula on a new food regimen over the next couple of weeks which will hopefully give us more time during the day to leave the house and will also give Lula a chance to feel hungry and therefore want to eat more by mouth. Wish us luck!
WALKING IN THE PARK /
It is amazing how quickly Roan has gone from taking a few wobbly steps in the living room to tearing around the playground like a drunken sailor.
NO WHINING /
In response to my post from yesterday, Sam wore this t-shirt:
Somehow I have a feeling that this t-shirt will be making frequent appearances in the coming years. Stay tuned.
In other news, Lula, poor girl, has a rash on her neck. We have to put cream on it which necessitates a hairstyle so unbecoming that it brings to mind Donald Trump's comb-forward coiff. The horror!
THINK HAPPY THOUGHTS /
Wow, apparently I sounded more despondent and ornery than usual in my last post because I got a slew of supportive and encouraging emails. Thank you all! The blog is a great place for me to vent but sometimes I forget that other people are reading it! Things have already improved. Everyone is slightly less congested and I am therefore slightly less cranky.
Yesterday Roan, Lula, and I went with Kia, our sitter, to the Pratt campus, which is really lovely. We sat on the grass and blew bubbles. Lula practiced rolling over. It was only about an hour but we all felt a little more human again.
Yesterday Roan, Lula, and I went with Kia, our sitter, to the Pratt campus, which is really lovely. We sat on the grass and blew bubbles. Lula practiced rolling over. It was only about an hour but we all felt a little more human again.
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| Roan with stone men |
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| Gorgeous Lula trying to roll over |
A BITTER PILL TO SWALLOW /
Sick kids make me very cranky. As it stands on a perfect day I hardly feel like I'm keeping it together, but as soon as anyone in this house gets sick I just want to go postal on everybody. First off I am never the one who gets sick, so I am the defacto nursemaid. Right now Sam, Roan, and Lula are all sick and are all a spluttering, wheezing mess. Lula sounds like a 14 year old french bulldog and Roan sounds like Bea Arthur. Sam sounds like himself, only whinier.
Most days Lula's medical regimen is a hypochondriacs dream, but now that she's sick it's almost comical. In addition to her dismotility (3x/day) and reflux meds (2x/day), and her "spa treatment" (Atrovent nebulizer 2x/day) she is also on an antibiotic (2x/day), a steroid (1x/day), 2 topical creams, an oral cream, and an Albuterol treatment. I literally cannot figure out how to time all of these so that there is at least half an hour between drugs.
We have her hooked up to a machine called a pulsox which reads her heart rate and oxygen saturation and when her O2 gets too low we have to hook her up to oxygen (I have this bizarre association between oxygen tanks and old, chain-smoking ladies in Bingo halls, which is a little disconcerting). This whole medical circus has taken over our every waking moment and none of it even addresses the longer term problems that are going on with Lula. Most of this is to treat a cold. Once I have her stable and sleeping, once she is over this cold I will still have an unknowably sick child. It leads to an endless cycle of fear and anger, fear and anger, and who can I direct all of this fear and anger at? There is no outlet because it's no one's fault.
It's absurd, I know, but this is when I start to ask the universe "what did I do to deserve this?" I used to work with a photographer named Brenda Ann Kenneally, who documented crack addicts, including a woman who was actually smoking crack in the hospital while in labor and her kids were born healthy. I think this is part of why all of the doctors and the medical community are so frustrating to me. They address the "what" but generally avoid the "why". Their protocol is fix now, ask questions later (or never). They can't ascribe meaning to any of the immense life changing decisions they are involved in for other people. Suddenly you find yourself in your living room with half a dozen medical devices, a laundry list of medicines, and they haven't managed to address what any of this means to your life or the life of your child.
This entire thought process cycles through my mind endlessly and it's frankly exhausting. I think we are hoping that at some point me might find a modicum of peace and acceptance within our lives. I think we are just tired of being frightened all the time and weeks like this don't help with that. Thus the crankiness.
I just realized this post is a hopeless downer. I have been trying to re-edit it since yesterday to have some sort of upswing but I really can't, so here it stands. Hopefully when everyone stops sneezing on me I'll be in a better mood.
Most days Lula's medical regimen is a hypochondriacs dream, but now that she's sick it's almost comical. In addition to her dismotility (3x/day) and reflux meds (2x/day), and her "spa treatment" (Atrovent nebulizer 2x/day) she is also on an antibiotic (2x/day), a steroid (1x/day), 2 topical creams, an oral cream, and an Albuterol treatment. I literally cannot figure out how to time all of these so that there is at least half an hour between drugs.
We have her hooked up to a machine called a pulsox which reads her heart rate and oxygen saturation and when her O2 gets too low we have to hook her up to oxygen (I have this bizarre association between oxygen tanks and old, chain-smoking ladies in Bingo halls, which is a little disconcerting). This whole medical circus has taken over our every waking moment and none of it even addresses the longer term problems that are going on with Lula. Most of this is to treat a cold. Once I have her stable and sleeping, once she is over this cold I will still have an unknowably sick child. It leads to an endless cycle of fear and anger, fear and anger, and who can I direct all of this fear and anger at? There is no outlet because it's no one's fault.
It's absurd, I know, but this is when I start to ask the universe "what did I do to deserve this?" I used to work with a photographer named Brenda Ann Kenneally, who documented crack addicts, including a woman who was actually smoking crack in the hospital while in labor and her kids were born healthy. I think this is part of why all of the doctors and the medical community are so frustrating to me. They address the "what" but generally avoid the "why". Their protocol is fix now, ask questions later (or never). They can't ascribe meaning to any of the immense life changing decisions they are involved in for other people. Suddenly you find yourself in your living room with half a dozen medical devices, a laundry list of medicines, and they haven't managed to address what any of this means to your life or the life of your child.
This entire thought process cycles through my mind endlessly and it's frankly exhausting. I think we are hoping that at some point me might find a modicum of peace and acceptance within our lives. I think we are just tired of being frightened all the time and weeks like this don't help with that. Thus the crankiness.
I just realized this post is a hopeless downer. I have been trying to re-edit it since yesterday to have some sort of upswing but I really can't, so here it stands. Hopefully when everyone stops sneezing on me I'll be in a better mood.
MUCH BETTER /
Lula is much, much better and now appears to have some sort of common cold or virus. Unfortunately, it appears that a cold or virus for Lula involves fevers, labored breathing, a low oxygen count, and heart attacks for all adults involved. She's on a bevy of meds, more than usual, but some of them are precautionary. Fortunately, her trusty assistant is always there to lend a hand.
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| I heart nebulizer treatments |
SPLISH SPLASH /
I know I'm saying "no" but he knows I'm not really saying "no" because how could you say "no" to this??
TIMING IS EVERYTHING /
It has been quite a week. In one week Roan has gone from taking his first wobbly steps to toddling around like a drunken Frankenstein. It's just obscenely cute:
We had a great weekend, very relaxed with a lovely Father's Day Sunday in the park and chilling in the back yard:
We were getting all geared up for my birthday on the Tuesday - our maiden voyage away from children for 24 hours - and wouldn't you know, Monday night Lula got sick. She fussed all evening, but we thought it was gas. Then we had a new night nurse - her second night on the job - who had to wake us up at 4am. Fever, labored breathing, definitely not a happy baby.
The next day I was sure we were going to have to cancel our plans. I was too frightened about Lula being sick to truly appreciate her colossally bad timing. I have heard this before from parents, however. Kids will never fail to get, say, chicken pox on Thanksgiving, or the flu just as you are going on vacation. I think it's their way of reminding you who's in charge.
Were it not for my mom stubbornly insisting that everything was fine, that Lula was much better and everything was under control, there is no way we would have left. But she pretty much kicked us out of our own house. It seemed so unnatural to leave my sick child to go out for the night, and when we got in the cab my stomach was tight as a drum (figuratively speaking - physically I haven't done a sit-up in two years).
First stop was sailing. This was a belated Father's day present for Sam. A few minutes on the Hudson and we began to ever so slightly unwind. Sam got to do things with jibs and tillers, or whatever, and I got to sun myself.
We tried not to talk about the kids. We sailed past an amazing $200 million dollar sailboat and tried to peer in and see who owned it. We discussed Jersey City. So far so good.
Then we went to The Standard. I had casually mentioned several months ago to my friend Cecelia that I would love to stay there for the night. It's a super chic modern hotel in the Meatpacking district situated atop the Highline with amazing views. A few weeks later I got a card from 20 of our dearest and most amazing friends who chipped in and bought us a deluxe king room for a night (I mean, seriously, how fantastic are our friends?!)
We called my mom about a hundred times and she kept saying everything was just fine, but I knew she wasn't being totally honest. Aggie came over after work and stayed and held Lula all night and waited until the night nurse showed up. I called mom after dinner and she tried to sound casual when she said, "we have her on a little oxygen", which made me freak out a little inside because her doctor made me swear that if we felt we needed to put her on oxygen that we would head for the ER. My mom was insistent, though, and told us to stop calling and enjoy ourselves.
Truthfully, we both slept terribly. We were both too worried, but I'm glad we did it. Between my mom and the night nurse there were two RNs there watching her. That's more than she would get in the intensive care unit. And I think it was good for us to practice being away for the night. It was much harder than I thought and not just because Lula was sick. I missed both of them. That's the rub; when you are with them all the time you dream of getting away, but as soon as you are away you miss them.
After all our declarations that we were going to sleep until noon we were both up at 8. But we did order room service and watch crappy tv and have a bit of a lazy morning before we headed back to reality. That was actually my favorite part- there are no lazy mornings with children.
We got home and within half an hour my mom and I were in a cab with Lula on the way to the doctor. She's on antibiotics now and already has greatly improved throughout the day. She and my mom slept all afternoon. I think they had worn each other out. Had my mom made the slightest suggestion that things were not so great we would have been home in a heartbeat, but she was absolutely determined that we would get to have our night out. She single-handedly willed it to happen.
We had a great weekend, very relaxed with a lovely Father's Day Sunday in the park and chilling in the back yard:
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| First bike ride! |
The next day I was sure we were going to have to cancel our plans. I was too frightened about Lula being sick to truly appreciate her colossally bad timing. I have heard this before from parents, however. Kids will never fail to get, say, chicken pox on Thanksgiving, or the flu just as you are going on vacation. I think it's their way of reminding you who's in charge.
Were it not for my mom stubbornly insisting that everything was fine, that Lula was much better and everything was under control, there is no way we would have left. But she pretty much kicked us out of our own house. It seemed so unnatural to leave my sick child to go out for the night, and when we got in the cab my stomach was tight as a drum (figuratively speaking - physically I haven't done a sit-up in two years).
First stop was sailing. This was a belated Father's day present for Sam. A few minutes on the Hudson and we began to ever so slightly unwind. Sam got to do things with jibs and tillers, or whatever, and I got to sun myself.
We tried not to talk about the kids. We sailed past an amazing $200 million dollar sailboat and tried to peer in and see who owned it. We discussed Jersey City. So far so good.
Then we went to The Standard. I had casually mentioned several months ago to my friend Cecelia that I would love to stay there for the night. It's a super chic modern hotel in the Meatpacking district situated atop the Highline with amazing views. A few weeks later I got a card from 20 of our dearest and most amazing friends who chipped in and bought us a deluxe king room for a night (I mean, seriously, how fantastic are our friends?!)
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| Crazy view of the west side |
We called my mom about a hundred times and she kept saying everything was just fine, but I knew she wasn't being totally honest. Aggie came over after work and stayed and held Lula all night and waited until the night nurse showed up. I called mom after dinner and she tried to sound casual when she said, "we have her on a little oxygen", which made me freak out a little inside because her doctor made me swear that if we felt we needed to put her on oxygen that we would head for the ER. My mom was insistent, though, and told us to stop calling and enjoy ourselves.
Truthfully, we both slept terribly. We were both too worried, but I'm glad we did it. Between my mom and the night nurse there were two RNs there watching her. That's more than she would get in the intensive care unit. And I think it was good for us to practice being away for the night. It was much harder than I thought and not just because Lula was sick. I missed both of them. That's the rub; when you are with them all the time you dream of getting away, but as soon as you are away you miss them.
After all our declarations that we were going to sleep until noon we were both up at 8. But we did order room service and watch crappy tv and have a bit of a lazy morning before we headed back to reality. That was actually my favorite part- there are no lazy mornings with children.
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| French toast and eggs benedict |
We got home and within half an hour my mom and I were in a cab with Lula on the way to the doctor. She's on antibiotics now and already has greatly improved throughout the day. She and my mom slept all afternoon. I think they had worn each other out. Had my mom made the slightest suggestion that things were not so great we would have been home in a heartbeat, but she was absolutely determined that we would get to have our night out. She single-handedly willed it to happen.
DADS /
Sam is a truly amazing dad, and in the best possible way he totally reminds me of my dad. I think one thing they have in common is that they both really seem to enjoy being dads. I don't recall ever once thinking that my dad didn't want to be a dad, although I know I gave him many opportunities to feel that way.
Sam also seems to relish his new role in life and I think in some ways it comes more naturally to him than being a mom does to me. I think he really was born to be a dad.
HAPPY FATHERS DAY DADS!
Sam also seems to relish his new role in life and I think in some ways it comes more naturally to him than being a mom does to me. I think he really was born to be a dad.
HAPPY FATHERS DAY DADS!
MRI NEWS /
The news is not great, but I don't really know what the news is. Betty, Lula's pediatric nurse, called yesterday to say that the MRI was "abnormal". Today we went to Bellevue to see her. The radiology report is a jumble of confusing terms, syndromes, congenital possibilities, etc. but with no clarity or diagnosis. It's being sent to other radiologists, the geneticist, and the neurologist for further analysis. Likely this will all lead to more tests.
I was distraught, which seemed to confuse Betty a little, who said "none of this should come as a surprise to you". I suppose it's not that it's unexpected, but that it closes the door on any hope for a normal life. I asked Betty, "how are we supposed to live with this?" and of course she had no answer. She suggested we might get more nursing help, that I should find a support group, etc. I'm sure these things would help, I'm sure they will, but they won't change the fact that we can no longer expect things to get better. She will not outgrow this.
On the upside I think I am becoming better at digesting bad news more quickly. Initially the tiniest setback with Lula would send me into a chasm for days. Now I can absorb devastating news in about 24 hours. I guess it's because really none of this changes our day to day lives for now. MRIs, pneumonias, whatever catastrophes happen to divebomb into our lives and fuck everything up now seem to come and go like the ebb and flow of a tide. There are still lunches to be made, walks to be strolled, therapy sessions to be had, naps to be taken. There are 8 feeds a day and night to keep her as healthy as we possibly can. For now I will focus on that.
I was distraught, which seemed to confuse Betty a little, who said "none of this should come as a surprise to you". I suppose it's not that it's unexpected, but that it closes the door on any hope for a normal life. I asked Betty, "how are we supposed to live with this?" and of course she had no answer. She suggested we might get more nursing help, that I should find a support group, etc. I'm sure these things would help, I'm sure they will, but they won't change the fact that we can no longer expect things to get better. She will not outgrow this.
On the upside I think I am becoming better at digesting bad news more quickly. Initially the tiniest setback with Lula would send me into a chasm for days. Now I can absorb devastating news in about 24 hours. I guess it's because really none of this changes our day to day lives for now. MRIs, pneumonias, whatever catastrophes happen to divebomb into our lives and fuck everything up now seem to come and go like the ebb and flow of a tide. There are still lunches to be made, walks to be strolled, therapy sessions to be had, naps to be taken. There are 8 feeds a day and night to keep her as healthy as we possibly can. For now I will focus on that.