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Archive for the ‘fighting and winning’ Category

At night, they sleep in star fields, by day they run with wildflowers.

10/14/2000

Lily Rose 2/8/2005

 

A gift from my sister. If you are remembering anyone today, I’d love to know about it, to hear your story. You can leave a link or just share in the comments. As you can see, I am 10 and 5 years out from these pregnancy losses of my girl children. I’m upright and alright. If you are needing support, I recommend Share and Glow in The Woods, a best friend, some brownies, maybe a glass of wine.  Beyond that I have no advice, I’m just listening.

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There was finding our new apartment, vacationing in the Adirondack’s, hernia surgery, more time with all my nieces than I’ve ever had before, a raucous week of VBS at our now old-church, moving on the only truly hot weekend of summer….and then one morning, having stayed that hot weekend of the move at my in-laws, sent my older two off to another week of camp, seen my husband off at work, that I found myself being packed up with three year old in tow, by my mother-in-law, who blog nickname shall be The Laundry Fairy, to drive to our new place.
And for some reason, even though I’d been planning it for close to a year – or was it 2? – I was bewildered, terrified and completely unsure of its reality. The moment I crossed the town line – I sobbed and sobbed, with Theo five point harnessed in his seat singing along to the butterfly music (Coldplay.) It was a mixture of sadness, relief, built up tension, plain old body tiredness and strange expectancy that held the thought, “and now what?”

I had been armed by the Laundry Fairy with clean laundry and a swiffer. Theo and I had to make the day work. His brothers would be delivered in the early afternoon & somehow I had to make home out what can only be described as a hallway between various tall & dangerous cardboard box towers. Our heat wave continued through that week. Children slept in all the wrong spots at all the wrong times. I called Sarah, which became the college freshman’s equivalent to a nightly call home. We went to the sprinkler park at Look Park and my children became city children, running off with all & sundry to cool off in the intense heat of late the late afternoons.

On cooler days, I taught my children how to walk places: ice cream with Auntie Tricia, the library, the other ice cream, Thorne’s across the street – if only because we can use their potties! La Veracruzana with Sarah and her kids, because it seemed wrong to have Sarah here and not being eating fish tacos with her, the bakery, all the way the 1.2 miles to school and then again to the bakery. We discussed not scootering straight into the street! Discussed may be the wrong word for that. We got “dehydrenated,” along the way (nice try, Henry) and needed to stop for “cookies so I can get more energy for my scooter.” (even better try). Theo has learned to drink water, for I cannot carry a juice fountain in the back of the stroller. We discussed not stopping suddenly on the sidewalk in front of the stroller, mom, dad, each other, the elderly, people with dogs, and generally anyone. We practiced moving to the side of the sidewalk before slowing down or stopping. We wept from someone else got to press the crosswalk button before us – I may have been weeping for other reasons. It was, in fact, a short course in city life. This is a small city, but busy, loud and full.

Cardboard has subsided to items strewn around the apartment….piles waiting to go upstairs, downstairs, tossed out, free-cycled, recycled, composted, tag-saled. Our garbage, compost and recycling are now picked up by bicyclist. Our street is having a tag sale in the morning and block party in the afternoon. We have gotten through the first day of school and now are hoping the kids behave enough tomorrow for us to, you know, interact with our neighbors and make friends. We’ll see.

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There was finding our new apartment, vacationing in the Adirondack’s, hernia surgery, more time with all my nieces than I’ve ever had before, a raucous week of VBS at our now old-church, moving on the only truly hot weekend of summer….and then one morning, having stayed that hot weekend of the move at my in-laws, sent my older two off to another week of camp, seen my husband off at work, that I found myself being packed up with three year old in tow, by my mother-in-law, who blog nickname shall be The Laundry Fairy, to drive to our new place.
And for some reason, even though I’d been planning it for close to a year – or was it 2? – I was bewildered, terrified and completely unsure of its reality. The moment I crossed the town line – I sobbed and sobbed, with Theo five point harnessed in his seat singing along to the butterfly music (Coldplay.) It was a mixture of sadness, relief, built up tension, plain old body tiredness and strange expectancy that held the thought, “and now what?”

I had been armed by the Laundry Fairy with clean laundry and a swiffer. Theo and I had to make the day work. His brothers would be delivered in the early afternoon & somehow I had to make home out what can only be described as a hallway between various tall & dangerous cardboard box towers. Our heat wave continued through that week. Children slept in all the wrong spots at all the wrong times. I called Sarah, which became the college freshman’s equivalent to a nightly call home. We went to the sprinkler park at Look Park and my children became city children, running off with all & sundry to cool off in the intense heat of late the late afternoons.

On cooler days, I taught my children how to walk places: ice cream with Auntie Tricia, the library, the other ice cream, Thorne’s across the street – if only because we can use their potties! La Veracruzana with Sarah and her kids, because it seemed wrong to have Sarah here and not being eating fish tacos with her, the bakery, all the way the 1.2 miles to school and then again to the bakery. We discussed not scootering straight into the street! Discussed may be the wrong word for that. We got “dehydrenated,” along the way (nice try, Henry) and needed to stop for “cookies so I can get more energy for my scooter.” (even better try). Theo has learned to drink water, for I cannot carry a juice fountain in the back of the stroller. We discussed not stopping suddenly on the sidewalk in front of the stroller, mom, dad, each other, the elderly, people with dogs, and generally anyone. We practiced moving to the side of the sidewalk before slowing down or stopping. We wept from someone else got to press the crosswalk button before us – I may have been weeping for other reasons. It was, in fact, a short course in city life. This is a small city, but busy, loud and full.

Cardboard has subsided to items strewn around the apartment….piles waiting to go upstairs, downstairs, tossed out, free-cycled, recycled, composted, tag-saled. Our garbage, compost and recycling are now picked up by bicyclist. Our street is having a tag sale in the morning and block party in the afternoon. We have gotten through the first day of school and now are hoping the kids behave enough tomorrow for us to, you know, interact with our neighbors and make friends. We’ll see.

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Recorded after Valentine’s Day at preschool, celebrated by a mother-child tea.

My day was hard. Seeing LP at school sort of blew my world apart. I find I don’t spend lots of time with other kids his age. We both find it exhausting. Apparently, he does very well at school. However, today was quite difficult for me. It’s hard to see how very much he stands out in a crowd – which is one of the many reasons I avoid them. It is easy to become accustomed to his ways. I’ve had nearly 4 years to become accustomed. I don’t know what normal is anymore. It is hard to separate out the differences that are there because he is one of us (those 10-15% of people who are just different) and which differences are signs of him needing intervention.

There were about 40 3 year olds, plus their teachers and mommies and cameras. The children were to stand in a circle and sing to the mommies. 99% of the children did this. A few were distracted (“hi mommy! hi!”) or just kind of spaced out. LP was spaced out for a short while. Then he laid down in the fetal position. Then he stood up, when he saw me, and tried to defend himself against all the stimulation by making a loud noise, like a roar, and saying “I’m a truck mommy, I’m a truck.” I felt so bad for him that he is just having to cope with all this. He wasn’t even particularly miserable, it was just sad. I cried the whole time. When the singing was over, he was very happy to see me. We had cookies and juice and tea. He was very well mannered, sharing with everyone in sight. I was so proud of his recovery from the over-stimulation. Then it was time to go to the classrooms to play. While I was still in round 18 of negotiation, I looked up. The whole area had cleared. All the other kids transitioned no problem. This was about 45 seconds that had passed. We had to have two time outs and two threatened trips to the car to go home. We finally made it to his classroom.

He saw all the mothers inside with kids and asked to go home and watch a show (his safety net). I coaxed him in. He made a fabulous tower of blocks twice. He asked his friends to admire it – most of the girls were making a craft. Then he cleaned it up, independently. He then played with an alphabet puzzle. His skills in this area far exceeding his peers. The other mothers looked at me with wide eyes – they are all very nice, but no one expects the least emotionally mature kid in the class to know the ABCs better than the rest. He was frustrated because one child kept trying to put M in out of order. The puzzle was a zoo train. Each animal was on a train car. It was a perfect storm of love and interest for LP. The other kids were trying to have fun with him – and he wanted them to – but he struggled to keep his temper, because M comes after L and what’s a boy gonna do?
At one point he decided to crash the whole thing, but rallied and we finished it – even taking turns with Noah (who very smartly was checking the box of the puzzle to see which animal should come next, this way they’d both always be right.)

The other children dispersed. He cleaned up completely on his own without incident or whining (not to self for at home!). We played with a few other things. When it was time to go, he (and Little Bear who had spent this time in the backpack) completely melted down. I lost my temper several times before we got to the car and cried the whole way home. I cried silently with Dan Zane going on the ipod. My disguise did not work. Connected as we are, he knew of my fears, disappointments and frustrations. He badly wanted to please me. He stood on the doormat with his coat and shoes on and sang two of the songs from the repertoire of the day. The first was Jesus Loves Me. The second I will record here:

I wish I had a big pink box to put my mommy in.
I’d put her in and tap, tap, tap and take her out again.
(repeat faster, with adorable hand motions.)

I managed not to weep uncontrollably but to clap and be proud, as he was of himself. He accomplished the task – not in the original setting, but on his own terms.It was the highs and lows of LP today. After lunch he helped me make the cake. He’s never done such a good job before. We read the recipe like a map which helped him be extra patient with the steps. At dinner he ate 4 meatballs with red pepper sauce!!! And had a piece of cake.

Upon reflection several days later:

Thursday was not pleasant. It was quite painful. However, Thursdays performance at school isn’t a very accurate measure of his success there. It was not a normal day, in any sense. I look back on that moment when he stood up from his fetal position. Where on earth did he find the strength to do that? Where did he summon the courage to defend himself with karate gestures and truck noises against the onslaught of stimulation? “I’m a truck, mommy!” He was quite proud of himself. I wish I had clapped for him then. It was raw courage, to be sure.

Tomorrow brings the task of calling the pediatrician’s office. We need a referral to the occupational therapy center at the children’s hospital. This is the upshot of Thursday. Friday’s task was we found out the OT center took our insurance and that they do not have a long waiting list. If they can see him in the next week or so, we may be able to have an evaluation in hand at our next PPT. He was deemed ineligible for OT services in the school district because his school performance doesn’t indicate that he is impaired enough be his sensory defensiveness to need them. I see that. I get it. However, home, transitions, play groups, errands, libraries and museums are awaiting attention. LP and I need just as much help there as at school, perhaps even more because school is usually predictable. Thursday was a true anomaly, but much of the rest of our life is stimulating, unpredictable and stressful – at least that is how it appears in LP’s brain. I’d love to help him get to a place where he finds is stimulating, enriching and pleasurable, at least most of the time. Wish us Godspeed.

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Apparently, a baby can have GERD that is silent. Not silent as in quiet or absence of noise, but silent as in no vomit or spit up. I think at this point LP had spit up maybe 5 times in 4 months. So, spitty he was not. However, if a baby throws up inside his own throat and then swallows what he regurgitated, you hear the sound.
The sound of
episodic,
high pitched
(high pitch = baby in pain)
crying.
And it doesn’t go away by 4 months. It doesn’t go away at all, unless you treat it. He will just cry more and more, because of the pain and because of the hunger. Only, he won’t know it’s hunger because in his very small, still developing brain:
eating=pain.

I imagine now he might have spat up a bit more, you know, if he’d been eating at all. Truthfully, I don’t think he had been eating well all along – remember poor latch, upcoming growth spurt, building milks supply, that had been around 10 weeks – and probably he had not eaten anything close to well for 2 months and most likely he had been surviving on sips of milk from my breast and water from my cup in the preceding two weeks. He was growing taller, being stretched out. There was not an ounce of baby fat on that child. He had a pointy chin, pointy elbows. It was easily masked in the fall weather with fleeces and hats. Even I did not see him naked all that much in our old drafty apartment.

I called my pediatric office on that day to say he had skipped three feedings in a row. That was a gross underestimation. 2lbs can’t be lost in three feedings. His diapers had been light for weeks. I had just been too sleep deprived to really absorb what that meant. It’s all so foggy now. The doctor asked the nurse practitioner to try a bottle. They eyed me suspiciously. Like many well meaning souls they respected my right to breastfeed and supported it as the healthiest choice. But, like all breastfeeding mothers I was suspect – was I going to insist on it event to the potential detriment of my baby? – No, I wasn’t. At all. Even so, he refused the bottle. The back arching, screaming, shrieking baby appeared. When not having an episode, LP was the sweetest, mildest tempered baby on the planet earth. I was completely in love with him and he with me. When presented with food, he was absolutely unrecognizable. The whole office came to the door. It was horrid. I was crying. Administrators were crying, the nurse was crying. In any case, the pediatrician called the hospital, the gastroenterologist at the pediatric hospital. It sounded like silent reflux. It had to be. If the Pepcid helped, it was GERD. If it didn’t help, it wouldn’t hurt him. No, they didn’t need to see him. Just weigh him, get the right dose and call it in.
Getting the dose right seemed like higher math. Still, I was assured it would be called in. Also, formula. Please put the baby on hypoallergenic formula. Just to be sure it wasn’t a milk protein allergy. Here is some to take home. We can revisit after we’ve seen him eat for a few days. After he sees the specialist.
Suddenly all the rules had changed. Now willingness to put baby on meds without a real diagnosis and willingness to wean suddenly = good mother. Okay

Let me be very honest here. I want to say this kindly, but I was broken-hearted. For me and for him. I wanted to nurse. I wanted nursing to be okay again. I hoped it might be one day. And I mixed up bottles of formula. For the first time ever. I had to read up on it, seriously. I was using tap water at first, unfiltered and unboiled. I also want to say that I am deeply aware that I had a hungry, sick baby, as well access to medicine and food to make him well. So, yes, I screwed my head on straight and did the next right thing. And I did need some talking down by my nearest and dearest. But, I was basically at peace.
Speaking of peace, after we managed to acquire our very own bottle of baby Pepcid and the teeniest dropper ever – And after we gave it to him and waited the requisite 30 minutes before feeding, oh the peace. He drank, burped, drank burped. For the next several weeks, our biggest problem became helping him through the 30 minute wait time, because he finally could eat. He could eat exactly three times a day happily. That’s how many times a day he had baby Pepcid. And 30 minutes was meaninglessly long to him. A totally different type of crying began and it was lovely to hear.

Yes, you are right, 4 1/2 month old babies do in general need to eat more than three times a day. Ours could not. Nor could he poop. Our very special hypoallergenic formula was causing bit of a back-up and baby oatmeal and pears were not powerful enough to help, nor pureed prunes.

Take a look though:

Our brand new pediatric gastroenterolgist was great – only she wasn’t actually a doctor. She was the nurse practitioner in pediatric gastroenterology at the Connecticut Children’s Medical Center. The doctor had an opening in January if we wanted to wait. It was October. We’d like to see the nurse practitioner, please. And she really was great. Baby Pepcid was working. He was poked, prodded, meausured and weighed with super accurate equipment, again and again.

He was gaining. His blood work was great. He still couldn’t poop. Before I knew it, I had to swallow my pride and pour pear juice into bottles for him to drink. He drank the specialized formula three times a day, 30 minutes after baby Pepcid. He ate as much baby food as he wanted (doctors orders!) and in between he was to drink juice. Out of a bottle. Yep. So, when I was out and about – you know not waiting around at home for 30 minutes to pass, or sitting up in his bouncy for and endless parade of puree, he’d drink a bottle of juice. in his stroller – to tied him over to baby Pepcid/meal time. And to help him poop.

And let me tell you what you must already know to be true. All the places I went, I could just tell that people thought I was the most wonderful, responsible mother ever. No, not really. They told me about tooth decay, baby bottle mouth, empty calories, failure to thrive and sugar addiction. It was really dreadful. Truly. There was nothing gracious for me to say. Should I tell them I’d only just gotten out of a horrible scrape with this kid and had saved his life by letting all my good parenting paradigms call to pieces? Should I just run away crying? Should I tell them to mind their own damn sugar addiction? I have no recollection of how I handled this. Only hating it and surviving it. And also not giving a damn what they thought. Because my baby was starting to gain weight. So now suddenly, unrestricted solids at 5 months and bottles of juice = good mother. Weird how that works out, huh?

More tomorrow on how I kicked motherhood’s ass with my super powers of juice filled bottles, arrowroot cookies and playing with antacids. Also, how early weaning kicked me around the room a bit, but I was the last woman standing.

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Did I ever tell you about Little Puppy? I mean really, all of it?

He was born June 04. It was an easy labor – really easy. I started of 5cm dilated in prodromal labor, the kind that is non-patterned and not hurting. I arrived at the hospital in the wee hours of the morning with persistent non progressing contracts and begged my midwife to break my waters so I wouldn’t have to be pregnant any more. 10 hours later he was born. Labor stayed relatively mild, intense contractions that peeked high and heavy but didn’t really impeded my ability to walk or find comfort in knowing it would pass in a minute. The delivery itself was more troubling. His head was transverse and a bit oblique too, I think. Looking from his perspective, wandering “what now mama? what do I do?” Tuck that chin little man and spin out! He did, a little too fast, a little too spinny, a little too urgent – having sat there for an hour. There was some damage to my perineum. It was a hellish repair. My recovery was miraculously quick all things considered. It may be that I was given a miracle because I was gonna need it.

At birth weighed 8lb 6ounces. A few ounces shy of my first baby’s weight, but no concerns. All seemed well. I felt in the first few weeks that he was not as good a nurser as my first child – then I felt guilty and tried not to compare them – In the next few months he gained weight. Some weight. I felt he should have been gaining more quickly, maintaining his position on the chart – like his brother did. Then I felt guilty and swore I would not compare them.
Not Compare = Good Parenting.
Every Kid is Different = Good Parenting.

By three months, he was either completely angelic or impossible to console. I felt his latch was not good – he was on/off very frequently – was he getting any hindmilk? Worries about Latch = Good Mother. No worries, LaLeche says he is latching on and off to build up my milk supply for his upcoming growth spurt. Allowing baby to do this so your milk supply increases = Good Breastfeeding Mom. Hurray me.

Between 3 months and 4 months we were experiencing episodic crying episodes frequently throughout the day, clustering in the evening. Colic. It had to be colic. Nothing else was wrong I was resenting the hell out of my baby = bad mommy. Colic. Okay, great, it goes away. It goes away. Resenting the hell out of my baby will go away. I slept on the sofa away from my husband and at the far end of the apartment from my 5 year old. I slept on the sofa next to a battery operated infant swing on full tilt. I had two sets of rechargeable fast charging D batteries. The moment it started to slow down the crying would begin. I’d change the batteries. make some feeble attempt at feeding, be refused. His tiny fists punching my breasts. His back arching as he let out piercing howls. I’d bring my face close to his face and pat his cheek to get him to snap out of it…literally a 4 month old baby so stressed that I had to snap him out of it. I’d stick him in my sling – cries, shrieks and all – and start moving as quickly as possible. It helped. I think in my mind, I thought, if this helps, there can’t be anything really wrong.

At 4 months he had dropped on the growth chart, significantly. But was still on it. He weighed about 12 lbs. Haunted, by an older brother who weighed 19lbs at that age, I pictured him thinking – ease up mom! I’m me. He was normal developmentally, and I described the crying:
Some babies cry more than others, even when it is not colic. He can have some baby cereal.

I went home convinced, sort of. I thought, I need to me more patient with nursing. Not rush it, not make him do it the way his brother did. Let it go, just relax. I’d sit in the rocker trying to get him on, just to take a little. I’d avoid it, then try to do it more frequently, then it’d be so miserable I’d avoid it, then I’d try to time his actual nursing. He loved the cereal. Loved it. For a while I was so crazed and sleep deprived I thought he hated me.

The night the infant swing stopped working as a soothing technique ripped me apart. I thought about his delivery. I thought, how am I going to survive this? Thank God the next day he stopped eating altogether. Would not even try, not even close. I was on the phone with a friend. I was weeping and saying this isn’t right -She said, go with it, go with it then, your the mom. Thank God. He was 4 1/2 months old – he weighed just over 10 lbs. He’d lost 2 pounds in two weeks.

Within two weeks he had been diagnosed with severe and silent GERD. It was better than our first diagnosis, which was failure to thrive.

More news tomorrow on how Little Puppy and I are not failures.

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There are places we love because of their familiarity. For me going back to my home town means going back to Manhattan, that ever changing busy island. Its changes don’t trouble my heart, Central Park feels the same today as when I roller bladed with my friends in high school. All New York pizza tastes really good, hot, greasy, dripping, the smell of oregano wafting out into the avenues. Some personal monuments disappear: Cafe 112 is no longer there on 112th street. When they closed, I didn’t know. A friend called with the announcement months later; we shed one rather pathetic tear to acknowledge all the dates we’d ever had there and moved on. Larger less personal monuments shall be along for a good long time to come – at some time I may yet try to describe my personal experience of watching a piece of my home town fall into dust and rubble, but not today. Today, it shall be the sculpture garden at the Metropolitan Museum: scene of many English classes, many excursions to sit quietly and sulk, write, meet up with people and then run outside to find fun in the park and leave our young cares behind – it smells the same, the light is the same, it holds the same coolness near the marbles and intense warmth as you sit in the sunned windows of the cafe ordering an Orangina and a muffin.

Other places seem to never change, they stand still in time and memory and small changes make an impression, but only fleetingly as so very much is the same. I’ve not been to Martha’s Vineyard in many years, but I can navigate its few roads easily on the strength of 10 years repeated visiting. The vast differences are now in my experience of being in that place. As a child, I had no concept of it except as a place we went to to take a boat to arrive at the beach. As a teenager I began to explore its ins and outs, remaining dependent on adults to figure out anything difficult, annoying or didn’t involve ice cream. As an adult & parent I had to find a way to function, feed my family, fill the car with gas, pick up a prescription and figure out which beaches we could safely go to and which had undertow or were private pass only.
There are so many place that I love. I love my mother’s house because, though I never lived there, I know my children feel so very at home and loved there. They’ve never been to Disney World, but they’d probably rate them about the same at this point. I love Rockport Massachusetts, another place of my childhood that I’ve learned to navigate as an adult. Ice cream places come and go, and so do artist’s galleries, but Woodman’s Lobster in the Rough is forever. I love New Haven; I’m not sure why, it’s just a very fun place to walk around and grab a bite to eat and maybe see some art. Part of me thinks that I will live there one day; and that may be true. These are all places that I return to again and again. They are places that each visit is special and unique, much because it is familiar, reassuring and becomes easier than the last.

But there are other streets I’ve walked on; other places that I love; places I know I may not make it back to. Monks and civilians are marching in the flooded streets of Yangon. When I walked those streets they were dusty, hot and dry. Protesters were hiding in homes, in store fronts, doing their very best to feed their families and stay alive. Everyone seemed to want to talk to us; we were Americans, they wanted people to know:

I’m not really a driver, I’m a doctor, but the government…
We’re trying to get our son out of the military. He’s so young. He didn’t know what he was doing. It going to cost a lot of money, who knows what will happen…
if only I could go to University in Europe or the United States…

So many whispers in such a short time – and even more stirring than whispers were the secret looks and pleading hearts, the people of Burma willing us all to understand. Pictures hung on the wall at the National League for Democracy – just miles from the Shwedagon where the monks began their marches – whispers of a hope that these are more than just a memorial, that there may be a future for these once elected men and women who have sat in jails or homes or in the back entrance of store fronts for over 20 years. I could think of no help to offer anyone, but my good will, prayers for their strength as they fight the evil that is oppressing them. I had little hope that an external force would intervene, or that in doing so that would be truly helpful. Their help must come from other quarters, but from whom?
Now from within their own strength, momentum has built and protests are coming from a new and powerful source. The Buddhists monks of Yangon have taken to the streets. They’ve just publicly aligned themselves with Aung San Suu Kyi, presumably in order to force the governments hand to decide what to do about these protests that it has been “allowing” over the past month. Will they now send uniformed police to beat them as they have civilians so often in the intervening years? Even just months after I left, there were marches, beatings, jailings, disappearances. With no way to track people I had met just once or twice, I was left wondering. Now I wonder, will this place I love change?
And, in this case, I am hoping so. My heart will break if acts of violence are committed upon these people, but my heart swells to know they are taking their destiny into their own hands. Their hopes matter, and they hope for change. Amen.

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