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The NICU & You: When You Go Home Before Your Baby

Apr20

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This week’s update was made possible with a heapload of help from the amazing Alexa Stevenson of flotsamblog.com. Amazing, I tell you! We interwebmailchatted about her postpartum experience as the mother of a micropreemie, complete with a pretty substantial stay in the neonatal intensive-care unit. Being sent home from the hospital before your baby is a whole different ballgame, but Alexa has some awesome advice for coping — or for helping a friend or relative cope — with a baby in the NICU.


Q. Okay, just in case there are a few readers who are not familiar with your story (FOR SHAME, FEW READERS), hit us up with a little background: How long was your daughter in the NICU? When did you get to go home?

Simone was born on February 8th (a bit over 25 weeks, 1 lb, 11oz) and came home four days before her due date of May 17th, so she was in the NICU for…yeah, a long time. 96 days. I went into the hospital for bedrest in late January, in the middle of winter, and we took Simone home just before summer began, so I essentially lived at the hospital for the better part of four months.

Q. What was YOUR first night at home like, especially being sans baby? (And I apologize for the ObviousDuhVille nature of this question. I’m like a newscaster asking someone “So how do you FEEL?” while their house is on fire in the background.)

Leaving the hospital without your baby feels painful and wrong on a physical level. Probably there is some specific hormone designed to make you feel like dying if you leave your baby postpartum, originally meant to discourage ape-mothers from leaving their offspring somewhere and going shopping or something. I lost. my. shit. when I left the hospital, even though I knew it was the best place for Simone to be.

Technically, I didn’t have to leave — my NICU had all private rooms, and in each there was a breast pump (genius) and a fold-out couch. But the nurses really encouraged me to go home because with the constant beeping and vitals checks and such, no one gets any sleep in the NICU, and I WAS recovering from major abdominal surgery, and wanted a night in my own damn bed which I hadn’t seen in more than two weeks. Our house was less than 5 minutes from the hospital, so we left, and that was the best possible decision. I got rest, and I got out of the hospital. (More on that later).

I did, however, call the NICU in the middle of every night when I got up to pump, and I would highly recommend this, even if you feel like a pest doing it. You are NOT a pest. It is your baby, and you can call anytime you want. It also gives you a heads up on what is going on so you don’t walk in to a surprise the next morning. (The one night I didn’t call, something happened, and walking into Simone’s room to find it full of chaos I wasn’t expecting but would have known about had I called SUUUCKED).

Q. How did your friends and family help you guys out?

My mother, who lives in Switzerland, somehow managed to organize a sort of Scott and Alexa feeding schedule, whereby various friends and relations would take turns bringing us dinner, which was amazing, and probably kept me sane, not only because it ensured that I actually consumed food at some point, but because it meant I got to speak to “outside” people. For a few minutes every evening while a cousin, etc. dropped off takeout, I would make jokes and small talk and remember the world outside my dark little NICU bubble.

I appreciated jokes, and congratulations (so many people forget that a BABY was born, after all), and comments about how beautiful Simone was (even if privately they were horrified by the tubes, etc.,), and concern, and assurances that I was handling things SO WELL, which everyone kindly said, but I did not feel at all, especially when the postpartum hormones started flowing, because let me tell you that that little baby blues crash about a week PP is NOT HELPED by your offspring being in a hospital.


Q. Food, jokes, and congratulations. Check! Now the opposite question: what didn’t help? What should friends and family of a NICU baby NOT do or say?

It was fine to ask questions, but one of the most exhausting parts of having a baby in the NICU was the constant barrage of phone calls and questions about Simone’s condition, and well what does that MEAN? and either I would be faced with explaining something very complicated to well-meaning but clueless relatives OVER and OVER, or I would just have to keep repeating “I don’t know,” underscoring to myself how uncertain Simone’s condition was and ultimately making me cry.

I highly suggest anyone with a baby in the NICU get themselves a website to post updates for family. Most hospitals have partnerships with a site like CaringBridge.org and someone should be able to help you get one set up. There is probably a whole “family resource center,” or similar, with computers and helpful people who are just dying to shower you with resources. In my case, I already had a blog, which I had studiously kept secret from my family until this point, when I was so overwhelmed by the questions that I finally snapped and said “I HAVE A BLOG! CHECK IT!”

That’s another thing: expressing concern = good, crying to me on the phone about how scared you are = BAD. It puts the parent in the bizarre position of having to comfort someone ELSE about their own critically ill baby, which is just exhausting and frankly a little tacky. Butch up, relatives!

And DO NOT EVER SAY “She’ll be fine!” because you don’t know that, and it may cause the mother to cold cock you with an ambu-bag. Stories about other preemies who have been fine, however, are accepted.

Q. How many hours a day did you spend at the hospital? What about your husband? Looking back, was it about right? Too few? Too many?

I got to the hospital early in the morning (I want to say around 8?) and left about 4:30 or 5:00. For the first couple weeks my husband either came with me or came later in the day, around 11:00, and after he went back to work he stopped by in the afternoons. Weekends we were both there all day.

Later, I did take the occasional morning off, or left in the afternoon to do something (a pedicure or Target or a movie with Scott), which was great, but early on when Simone was so unstable, I just couldn’t do it. People kept telling me to leave the hospital, but honestly I think being there was good for me, because it felt like I was DOING something, even if all I did was sit there and pump and stare at my baby or my laptop. However, we went home every night and sat on the couch eating our takeout and watching the most mindless thing we could find on TV, and that was essential.

It was also WONDERFUL when friends took us out for dinner (not least because I hadn’t had a drink since August), and we did that a whole lot. Technically I could have stayed overnight in the NICU, even showered there, but I think that would have ended very badly, with me a gibbering mess. This way, I got a break every night, so that I could be there all day long and be present. And remember, if you get sick, you’re not allowed in the NICU at all — you have to take care of yourself, or better yet, put your partner in charge of taking care of you, because frankly you probably suck at it. People brought us snack-y food to eat in the NICU, which was great, because I was too afraid of missing something to go to the cafeteria.

Scott and I handled Simone’s time in the NICU completely differently, especially in the beginning. He didn’t want to watch the procedures, I wanted to see everything, however awful-looking. He mostly slept all day on the NICU couch, while I stared at the monitors and tried to help the nurses with Simone. For me, the hospital actually came to feel like home, because that was where my daughter lived. We had very different tolerances for the hospital, and that is fine — not everyone is helped by being there all day, and needing to get away does not make you a bad mother. It makes you a smart mother who knows how to take care of herself so that she can be there for her baby when he/she needs it.

Q. Possibly a dumb question, but how did Simone’s NICU stay affect maternity/paternity leave?

Not a dumb question at all. We were really lucky in that Scott got a month of paid paternity leave, and I got eight weeks. He split his paternity leave so that he had some time at the beginning of Simone’s NICU stay, and some time after she came home. Some people go back to work while their baby is in the hospital so that they can have their leave when the baby is at home and not being cared for by a squadron of trained medical professionals.

I decided not to go back to work when my maternity leave ended and to freelance instead, which we couldn’t entirely afford without help from my family, so we were very, very lucky to have that. Of course, I say “decided,” but Simone’s pulmonologist made it very clear that she could not go to day care for the first two years, so the decision was a fairly easy one. I really, really feel for the parents who aren’t that lucky, and I can’t imagine how hard it must be to sit in some inane Best Practices meeting while your BABY IS IN THE HOSPITAL. My freelance career hasn’t exactly bloomed like a thousand roses, so our situation may get more complicated if something doesn’t change, but that’s a whole other story…

Q. Googling medical lingo during a NICU stay: helpful and necessary or PUT DOWN THE LAPTOP FOR THE LOVE OF GOD?

For me, it was essential and sanity saving to understand what was going on, and be able to talk to doctors in their own language in order to trick them into keeping me fully informed (otherwise they have a tendency to gloss over things they assume you won’t understand — I had to specifically say to the nurse/doctor who were talking in low tones “You do not need to whisper. I will not break down. I want you to tell me everything.”

Of course I took this a little far — I (almost) never cried in front of the doctors, because I was so afraid they would stop telling me everything, for instance. But I needed the information, and I needed to know what all the numbers meant (what good blood gas values were, and what Simone’s chest x-ray looked like from day to day, because people rattle off numbers and acronyms like crazy). But surprisingly, the internet was not very helpful. It was great for acronyms and such, but there just wasn’t a lot of information, because neonatology is still sort of bizarrely experimental in a way.

So I had to rely on the doctors and nurses to explain things, and on my wonderful Preemie book I got when I was on bedrest, which I cannot possibly recommend enough (PREEMIES, by Wechsler). Don’t be afraid to ask questions, and if you don’t understand, say so. BUT, like the spending time at the hospital thing, your mileage may vary. Not everyone likes to know everything. My husband was in that camp–he did no research, he relied on me to tell him what was going on, and that was best for him. For me that would have been scarier, but for him it meant he didn’t live and die by the results of every ABG, because he didn’t know what that meant.
Q. What was Simone’s first night at home like? Was there anything about having her finally home that you weren’t totally prepared for?

HA HA HA HA HA! Oh, Amy. Well, the oxygen and apnea monitor and fleet of medications were very intimidating at first, as was getting out of the house for our many medical appointments (seriously, you think leaving the house with a newborn is hard under normal circumstances, try doing it while carrying an oxygen tank). And the first time she had an apnea episode during a feeding at home, where there are NO NURSES, took a good decade off my life. And all of the normal stuff — is anyone ever really prepared to take a baby home for the first time?
But actually, a lot of it was easier because we had three months with training wheels, basically, to learn from the nurses how to care for Simone. So we weren’t as skittish around her as we would have been if we’d held her for the first time, like, the day before. In that way it was easier.

Oh, and another thing that was a total surprise was almost (almost! only almost!) missing the NICU once or twice–the nurses had become our friends by this point, and it had been my routine for 1/3 of a year. It’s actually pretty common to have a time shortly before the baby comes home when you aren’t sure you want to leave. Stockholm Syndrome, maybe?

Q. If someone knows their baby will likely spend some time in the NICU after birth, is there really anything they can do to prepare themselves for it?

Yes! Well, to a point. Part of it, no. But you can lessen the culture shock, so to speak. First of all, get thyself to a bookstore and buy a copy of the PREEMIES book I mentioned above.

Nextly, visit the NICU and/or talk to the neonatologists. I was on bedrest at the hospital and couldn’t tour the NICU because I wasn’t allowed up and about, but the neonatologists came to see me every week and give me statistics about what my baby’s chances were that week, what problems they were likely to face, etc. This was amazing, because it turned out all the statistics I had found online were totally misleading, and Simone had a MUCH better chance than I had been led to believe. I was at a hospital that routinely handled 23 weekers, and their statistics with babies like Simone were very good, and just hearing them treat it like something routine and DO-ABLE helped. Neonatologists, as a whole, are some of the kindest doctors you will ever meet, and they are whip smart, because the process to become a neonatologist takes about a million years, beginning when they are actually neonates themselves, I believe.

Third, bring lotion. It sounds stupid, but you are going to be washing and sanitizing your hands dozens of times a day with harsh take-no-prisoners hospital soap, and you will develop reptilian NICU claws if you do not moisturize. Do it for your baby, because no one likes to be stroked with something akin to coarse sandpaper, especially when their skin hasn’t even finished developing.

Set up a website ahead of time to keep family/friends updated.

Rent a hospital grade breast pump. Trust me.

Once your baby’s born and you’re in the thick of it, get yourself a primary nurse (NICU nurses are often assigned as “primary” nurse to a specific baby, one they then care for every shift). Primaries learn your preemie’s quirks—important when the first sign of infection is often that baby “just seems different.” Our primaries became like family, explaining medical jargon and celebrating Simone’s successes almost as much as we did. It’s easier to leave at night knowing your baby is in their hands. We still keep in touch.

Ask your nurse if you can change your baby’s diaper and take his temperature (this was done every few hours along w/ BP, etc). It will build your confidence and help you from feeling helpless, and on days she’s too fragile to hold it will give you a chance to touch her. Speaking of which, don’t be afraid to ask the nurses to get your baby out to hold, even if it seems like too much trouble (it is a 2 nurse job when the baby’s on a vent).

Which reminds me: you need a healthy dose of chutzpah in the NICU. If a nurse is talking too loudly and it’s upsetting your baby, ask her (politely) to keep it down. Show up for rounds, and if you have concerns, voice them. Doctors and nurses sometimes change from day to day; you’re the constant. NOBODY knows your baby better than you.

Read all about Alexa and Simone (who is now an adorable chubbykins with a knack for unspooling the toilet paper and driving her mama crazy, AS GOD HIMSELF INTENDED) at flotsamblog.com. I would just save yourself the time and start with her archives and read that way, because you know you’re going to want to after an entry or two.

If you landed here but are still pregnant, visit Amalah’s Pregnancy Calendar. You won’t regret it.

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About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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19 Responses to “The NICU & You: When You Go Home Before Your Baby”

  1. spitupisthenewblack Apr 21 at 12:21 pm Reply Reply

    My son was born 12 weeks early, weighed 2 lbs 8 1/4 ounces and was in the hospital for 7 weeks. I can relate to everything above and would suggest the same Preemie book, which sadly enough was really the only one I could find. What I will say about my experience is holy crap I have never been so scared or angry or sad in my entire life, but I learned a really valuable lesson that when you get handed a huge pile of crap everything can still be ok in the end. I thought I would never get off bed rest and that my son would never come home, but he did and he’s healthy and he’s happy and so am I. Having a baby in the NICU is a rollercoaster ride – John was supposed to come home three times before he really did and everytime I thought I couldn’t take anymore, but we could and we did. If I had to do it over again I would have tried to have been less scared and more present. Even though no one can tell you that your baby will be ok you have to know it and trust it in your heart. Love that baby as much as you can even if you don’t know how long you have it or what the outcome will be. Tell everyone to screw off when they say they understand and you know they don’t. Thank god for your friends and family and all of the little angels you meet along the way who make the day a little brighter and the bumby road a little easier to bear. Know that you are not alone and that babies are born premature everyday and even the ones who seem like all of the odds are stacked against them are the ones that can battle back the hardest. Our little one turns 1 in about two months and when I look back on those pictures with all of the wires and IVs and then across at our plump little 18 pounder I know that someone greater than me is in control be it god or gods or some other being and we have to surrender to that and simply wait with prayers and positive energy and happy hearts even when all you see is darkness.

  2. Marnie Apr 21 at 2:03 pm Reply Reply

    Thank you so much for your story. I haven’t had the experience, but a friend had twin 23-weekers and this gives more insight to what she must have gone through but still is afraid to talk about to anyone.
    One of the biggest questions I have is, how do you handle this when you already a child (or children) at home? Obviously you want to be there with the baby as much as possible, but your other kids (whether they’re toddlers or school-age) need you as well. How have other mothers handled this situation?

  3. Onna Apr 21 at 2:05 pm Reply Reply

    Loved this article! Onna

  4. Jenn Apr 21 at 2:34 pm Reply Reply

    I really appreciate this article – Alexa has given great information about dealing with NICU. And I can’t imagine having a child that early or in NICU that long – my son was in the NICU for four days and he was born 9 days overdue! I had a 3 year old son at the time as well and family and friends were invaluable. Sleeping at home in my own bed (I was only 5 minutes from the hospital as well) was a lifesaver. I felt I HAD to be at the hospital as much as possible, while my husband cared for our older son when he wasn’t with family. It gave him a sense of normalcy having his dad there for him. We explained a bit about what was going on so he wasn’t completely in the dark, but not enough to scare him. Kids are pretty perceptive and need to know Mom and Dad are upset because of something else, not because of them.

  5. Megan Apr 21 at 5:08 pm Reply Reply

    GREAT post. Our daughter was a NICU baby for 24 of the longest days of my life. She was born full-term, but was diagnosed w/ a hypoxic ischemic encephalopathy (basically, the cord was wrapped around her neck, and deprived her brain of oxygen), and later a cardiac arrhythmia.
    I feel like Alexa spoke from my head, her answers to your questions were so exactly what I would have said. I wish this post existed back when Lila was in the hospital, it would have become my Bible.
    Lila’s been home with us for a month now, and I thank god every day for her NICU nurses and doctors. They were amazing, not only to her, but to us also.

  6. Penny Apr 21 at 6:24 pm Reply Reply

    Wow, I hope Alexa writes a book about this issue – how to, My Story, or whatever. Great interview.

  7. Becky Apr 21 at 8:41 pm Reply Reply

    My son was 9 weeks early and born at 3 pounds. I was in the hospital for a month before on strict bed rest and the one thing that really helped calm my fears was to see the other babies in the NICU before mine was born. When I was told I was going to have a baby over two months early, I was terrified that my undercooked kiddo would end up looking alien like. When I saw that small babies just look like small babies it did wonders for my over active imagination.

  8. Molly Chase Apr 22 at 9:18 am Reply Reply

    I’ve followed Alexa for a long time. My son was a NICU baby and the girl I’m currently pregnant with will be also (I’m a type I diabetic; it’s a sure thing). Luckily for us all, I apparently make healthy babies and Max and I went home at the same time; hopefully the New Girl and I will as well. Still, the idea of him being in the NICU scared the bejeebus out of me. I wish I’d read this four years ago. Thanks for letting us read it now.

  9. Kristin Apr 22 at 9:34 am Reply Reply

    In response to Marnie’s question: My Niece was in the NICU for several weeks and my SIL already had two kids. My SIL decided she was going to stay at the NICU the whole time my niece was there (obviously, this may have been different, had she been there for 4 months…) but my BIL kept the older kids at home and brought them to the hospital almost everyday to see their Mom and Sister (from 40 minutes away!) On the weekends extended family took turns keeping the older kids so my BIL could stay at the hospital too. It took some logistical work, but we did it!
    I love Alexa’s site and the article. Thanks for sharing this Amy!

  10. Anonymous Apr 22 at 2:58 pm Reply Reply

    Oh nooooo, I’m now addicted to yet ANOTHER mommy blog. More house chores are going undone. Grrrr Amalah, grrrr.[shakes fist]

  11. AidanAndRachelsDad Apr 23 at 9:54 am Reply Reply

    My daughter was born full term, but the doctors found some blood in her stool and they couldn’t explain it. Four hours after my wife gave birth they transferred her to a NICU at another hospital. My wife and I were never more scared before in our lives. Thankfully she was released after two weeks. Any amount of time in a NICU feels like an eternity.
    Alexa’s article was great. I got a little weepy as I read through it.

  12. SassPizzazz Apr 23 at 11:23 am Reply Reply

    Well, Amy and Alexa, I hope you’re both very proud of yourselves. I’ve gotten hardly anything done in the past 2 days, as I’ve been working my way through Alexa’s archives. Drat all you bloggers and your excellent writing.
    Seriously though, I’m glad this issue is being included in the Bounce Back feature. I’ve been working on a research study about NICU moms and breast milk expression for the past year, and a NICU stay is one of those things that a lot of people go through but not a lot of people even think about if they haven’t experienced it personally.

  13. maria Apr 23 at 2:45 pm Reply Reply

    My now thriving 7 1/2 year old was born w/a serious heart defect and had 3 open heart surgeries by age 2. We were lucky – our NICU (actually CICU – cardiac icu) time was short by comparison – but we didn’t know how long we’d be there (2 weeks or less for each procedure). I found myself nodding and saying yes, yes throughout much of this – I especially hated having to comfort other people (how on earth could my SIL make my son’s crisis about her!!!!!) and don’t tell me everything’s going to be all right – because he could die.
    Best of luck to you as your child grows – I hope Simone is as loud and opinionated at 7 1/2 as our Gibson is now.

  14. elle Apr 23 at 11:46 pm Reply Reply

    As a medical (semi) professional currently stationed in an ICU, I can add only one thing: it is very good if you can be around during rounds every morning. It is so helpful when family is there on rounds. I’m in the adult ICU, but many of them are too sick to speak for themselves, so their family members play the same role as parents do for sick babies.

  15. Della Apr 25 at 4:28 pm Reply Reply

    So, I’ve got nothing of my own to add here, but the famous Heather Spohr, Maddie’s mom, made a great post about how to help friends in the NICU, here:
    http://thespohrsaremultiplying.com/2009/03/nicu-eff-ay-que/
    Although most of the similarity is probably just because it’s so TRUE, due to the striking similarity of the wording of some things, I was not surprised to find out Heather and Alexa know each other :)
    Anyhow, Heather’s post would be a great tool for NICU families to hand out to their friends and families, and a great tool for any friend wondering how they can help.

  16. indamanda May 01 at 5:20 pm Reply Reply

    My daughter was born at 28 wks, 1 1/2 pounds, she was in hospital for 98 days. Having a have a sense of humour about things really helped us to keep a grasp on our sanity. We were proud of everything. “Hooray! she did 2 hours off the SiPAP!” “Yay for gaining 17 grams!” Remember that the fewer tubes and wires, the better. And go to every support group your hospital offers, and if they don’t offer one, start one. No one except those in the same situation can really understand. It’s like combat, if you haven’t been there, you don’t know.

  17. Cynthia Nov 19 at 4:43 pm Reply Reply

    Well, I really don’t know where to start. I’m 17. My son, Kaiden, is still currently in the NICU. Doing very well, though. If there was one thing I would wish I could do, is be there more often for him. I know that I don’t have much to worry aboutand that he is in good hands. But I’m his mom, he is suposed to be under my care, not a stranger’s with rubber gloves. There was one point, when nothig was really going wrong. He was eating from a bottle, about to be moved into a crib when they could get an available one, off the nasal camula (where they have tubes up his nose and it forces a very low grade flow of oxygen to his lungs to make sure his airways are open), then the next day I go back… disaster. He was back in the omnibed bc he couldn’t keep his own tempterture, they stopped his feedings, he was back on the nasal camula at a slightly high flow… I couldn’t help it but I started bawling my eyes out. Right infront of the nurse. I was so angry. I thought it was their fault. Like they had pushed him too far or too hard… It tookme till a few days ago that “hey he’s tiny and if he needs the help and the extra support, they have to give it to him”. I still cry. I still worry. I mean, I want my son here with me, but I want to make sure he is completely and fully ready to come home too. I went into this mess completely… uneducated. All I can say is to take it day by day. Make the best of that day, too. And oh, NEVER look at the negitive things or let them upset you. Stay positive and remember, your baby feeds off of your emotions and your body. You stay strong and so will your baby.

  18. Casi May 02 at 7:31 pm Reply Reply

    I had a normal, healthy pregnancy until I started going into labor early April 22nd.  When I made it to the hospital I was 3 cm dilated and though they gave me magnesium sulfate to stop the contractions I had my son April 24th at 10:28pm at 30 weeks and 2 days.  They don’t have an answer to why I had a slight placental abruption.  I had him naturally and they sent me home two days later.  Apparently my situation is very rare, but he is my first baby and I can’t help but feel so… Empty with out him, full of happiness and sadness at the same time, resentful that he’s in a hospital that doesn’t let you stay with your baby.  I know he has the best care and I am fortunate, and I’m trying so hard to be positive and strong for my son.  He weighed 3 lbs, 7 oz.  This is his 8th day in NICU, and he has been breathing on his own since the magnesium wore off and has been solely on my breast milk through his tube for the past couple days.  He really is doing so well; he has a little Apnea and they started him on caffeine this morning and it hasn’t happened since.  His jaundice levels stabilized.  He weighs a little over 3 lbs 4 oz and has been gaining slowly but surely.  He’s so beautiful and tiny, the night nurses let me hold him for a little while when all is quiet.  They just tell me he’ll be home around my due date.  It hurts to think about it being that long, but I try to take each day at a time.  It’s really good to read your story.  Thank you for sharing.  

  19. Hollly Nov 07 at 7:15 am Reply Reply

    It is NOT healthy to write posts like this one. NICU moms HAVE to realise that people are just trying to comfort us. Posts like this one make me cringe. This is the most UN helpful post ever written.

    Shame on whoever wrote this! I think you ALL need to read this post on language. Here’s the link to it- http://agirlnamedcharlie.blogspot.co.uk/2014/09/looking-past-disability.html. 

    This is why I hate people. 

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