And It’s Time For Another Reality Check

I was on my friend @Psychmama’s Facebook page the other day and saw that someone had commented on her sharing of the What I Would Tell You post (if you haven’t read it, you really should. Well worth it).

This is the long comment I saw.  And of course, I couldn’t help but respond, because, well… I’m me.  (click to see it full size)

britta 217x750 And Its Time For Another Reality Check

Caring and ‘getting it’ are two vastly different things.

You can SYMPATHIZE but you cannot EMPATHIZE if you have never been a special needs parent. And there is a deep and wide chasm between sympathy and empathy in the special needs world.

That would be like me telling a doctor that I care so I should be allowed to do surgeries. I guarantee that doctor would be taken aback and insulted.

See… the big difference between special needs parents and someone who hasn’t walked in our shoes is that we see our kids as normal. They are normal to us. They are our children and we live every day with their disability. That is OUR normal. When people come up and try to do the ‘I’m pretending I’m treating your kid like they’re normal’, it pisses us off. Because the first thing you noticed was not their smile or how much they love to laugh. It was that they can’t walk/talk/eat/fill-in-the-disability. So we slap on the fake smile until we can escape and shake our heads about the people who think they understand, but really don’t.

We don’t want pity for our children. We want our children to be accepted for exactly who and what they are; to be treated like any other child. Not to be marked by their challenges. Unfortunately, yes, we are a ways off, as a society, from being there.

And the old ‘God will never give you more than you can handle’ IS bullshit. Because there are days when we are totally overwhelmed with it all. After your child hasn’t slept for weeks, or months, or in many cases, YEARS, you wake up and think ‘I cannot do this today. I just can’t’. And you dream of normalcy. And you have yourself a good cry in the shower before you go on with your day. Because being a special needs parent isn’t easy.

I won’t lie. There are the good parts. I’ve met lots of wonderful people because my daughter is special needs. But those friendships are not like normal friendships. Dawn and I have spent the last month supporting one of our friends who’s daughter has been close to death in the hospital. Every day we are there to listen, to research, to offer advice, and just to be there while she cries. And then we go back to our lives and cry ourselves because that could be our child in the hospital and part of us is so glad it’s not. But we understand on a level that most people can’t. And that is why, in crisis, we turn to parents who have been through what we’ve been through. Parents who can speak in medical terminology and acronyms, for that is the secret language of special needs.

And being friends with special needs parents brings other challenges. If anyone has so much as a sniffle, playdates are cancelled. They’re also cancelled because their kids or mine are feeling too overwhelmed/tired/anxious/overloaded/overstimulated on that particular day. Parents of normal kids get frustrated when we cancel last minute because of these things. Special needs parents just say ‘Oh, no worries. I totally understand,’ and you know they do, because the next time it will be their turn to cancel.

Special needs kids are wonderful and unique and challenging. As much as I love my daughter, I would never wish a special needs child on anyone. Not because I think they are ‘less than’, but because there is so much that goes on day-to-day that cannot be shown on some TV show. I’m talking about the doctors appointments, meeting with therapists, documenting of medicines, organizing of supports, purchasing of special support equipment, dosing meds, special exercises and the list goes on and on. So much of our days are consumed living with special needs rather than living with a child.

Therapists don’t parent our children. They are not nannies. They give us the resources to help our children reach their milestones. But much of the actual work, still falls to us, the parents. Where you would sit and play with your child, we consider what developmental area we’d like to work on and pick toys or activities appropriate to that.

When you leave the house, what’s the first thing you pack? Diapers? Oh your child is potty trained? Yeah, my almost 5yr old isn’t. Special needs, you know. How about meds? Oh you don’t need to carry a med case? Ours goes everywhere with us. Inhalers, spacer, anticonvulsant, oral steroids, fever meds, allergy meds, pulse-ox, stethoscope, thermometer, and of course My Little Pony bandaids…can’t forget those for when her balance goes and she does a faceplant in the gravel. And then we have to make sure we’re home in time to give her the evening doses of meds (unless we make a special point to pack those and bring those with us). This is all part of normal life for us. Not the glamorized medical docu-drama you see on TV.

You seem to have romanticized being a special needs parent. For that reason I hope you never are, because your world would come crashing down. Being a special needs parent is being vomited on every day (sometimes several times a day) for years. Being a special need parent is wiping feces off walls from kids who should be old enough to know better. Being a special need parent is cleaning up tube feeds that have spilled the entire contents of the feed bag over the floor. That is being a special needs parent. It’s the furthest thing from glamorous.

Is it rewarding, though? Yes, in the way that parenting any child is rewarding. You celebrate the milestones and the successes. They just don’t always come where and when you expect them.

But when you come up to a special needs parent and tell them you would love to have a special needs child, don’t be surprised if the reaction is less than favorable.

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31 Responses to And It’s Time For Another Reality Check

  • Lisa says:

    My best friends are the parents of a special needs kiddo and I love them dearly and empathize with them every step of the way but I fully admit I don’t know what it is like to be in their shoes. I know more than most since I’ve seen the day to day, I’ve been the listening ear, I’ve been the shoulder to cry on, but I don’t live it. I can’t know exactly what it is like because I don’t live it.

    The blog you referenced is actually written by a close friend of their’s. Their daughter and my friend’s son attend school together and go to the same respite facility in Ottawa. Her words are beautiful and I read everything she writes. I love that her words are giving those of use on the outside a small glimpse into the world of a special needs parent, but even with her well written words we cannot know what it is truly like to live it.

    It really aggravates me when those who don’t have special needs kids pretend like they know what it is like to be in their shoes. I can only imagine how much it pisses you and other special needs parents off.

  • Jackie says:

    My life is that much richer for reading her rambling post about whether she thinks she could handle a special needs child or not.

    If I were queen of the world, there would be no such thing as “special needs” all children would be perfect all the time. There would also be unicorns and my plumbing would spout hot chocolate, but that is neither here nor there.

    The best I can hope for is to be the best person I can, whether it’s be there for a friend to rage at, or pick up a lost binky at the mall. As parents we all need help. They weren’t shitting when they said it takes a village. My challenge is to parents (or people) without any special needs people in their life. What are you doing to help someone else?

  • Britta Rothert says:

    I didn’t say I know what it is like to be in your shoes.

    I said I can IMAGINE.

    I think I couldn’t cope if I was the mom of a special needs kid. That was what I said. I was looking for the right words, though, and couldn’t find them. I wanted a dialogue and didn’t know how to begin.

    I am sorry I pissed you off!

    I want society to accept every person as they are. And I have enough little “handicaps” of my own …

    I have always been different.

    It makes me cry that I can’t build half a bridge over that gap between us … I would have liked you to build the other half so we can meet.

    Jennifer tells me I was on that “docu-drama-glamour-story” trip – Well, I never watch TV … and: no, that’s not what I think. I don not romanticize, I am afraid of becoming such a mom.

    And I am always thinking that I am soooo lucky that I don’t have to carry meds, that I can play with my child instead of picking the right thing for therapy …

    No, I didn’t say: “I KNOW EVERYTHING about your journey.” But I said: I can get it.

    The starting point was: “Don’t expect the others to be able to get it – they can’t.”

    I can get it means: I understand! Look into the dictionary, these are synonyms.

    What can I do if you don’t allow me to UNDERSTAND?

    And I know I act clumsily!!! Because I don’t see special needs kids every day, because they are segregated! That makes me helpless and I want to CHANGE that! I want to help change society.

    So, please forgive me to not find the right words just from the start – and help me to do better!

    Romanticizing is not what I want to do, nothing could be further.

    I want to understand, to integrate, to … not be helpless next time and see the smile first!

    PrincessJenn Reply:


    Imagining and reality are two very different things. That is what I’m trying to make you understand.
    It’s like when people without kids try to tell you how to parent your child. They don’t get it. They think they do, but there is no way they really could because they haven’t got the experience to draw from.
    If you really want to learn and understand, volunteer to work and help special needs children and adults. Because until you have first hand experience there is no way to truly understand.

    Britta Rothert Reply:


    Okay. I have really intended to volunteer for some years but didn’t put it into practice so far. You are right. I thought of that years ago and only put it back as long as my daughter is little. I haven’t given up on that thought yet.

    I didn’t mean “truly understand”, I only meant “theoretically understand”.

    I apologize.

  • Heather says:

    I love you.

    You know, this is sort of like how I get pissed off when SN mom’s tell me that they could be nurses because of all they do. While I “get” where they’re coming from—being a nurse is not simply giving a few medications and calling it a day. There are care plans, and education, and…well, quite frankly, there’s a lot more to it than what the public perceives. Just like being a SN parent. And even in parenting, each of us has a different path. I don’t know what a child having epilepsy is like–so all I can do is support you. I will not give you sympathy. Sympathy is best given in grieving…not when there is life to fight for. I can empathize with your struggles in daily life, because I know it is hard–but even then I always feel like I don’t even quite have that right. We all go through it in our own ways and in our own time. For this woman to try to tell my dear friend that she understands–and still make it all about herself–is absolutely a slap in the face to all of us who do, on a daily basis, watch our kids struggle to survive. SURVIVE—not just to get through the day, but we are hoping our kids don’t die. Daily.

    I’m pissed so I’m rambly. Sorry. :)

  • Britta Rothert says:

    Luv u 2.

    Because you don’t want to understand what I want to tell.

    Only 12 hours ago I listened to a father who suffers because he just wants that his son SURVIVES. He was glad I heard him. You only want to slap me in the face.

    Then feel free to do it.

    PrincessJenn Reply:


    It’s great that you were able to help someone by providing an ear to listen when they need it.
    It still doesn’t mean that you understand what having a special needs child is like. That’s not a slap in the face. It’s the truth.

    Heather Reply:

    @Britta Rothert, Actually, what you are trying to say IS a slap in the face to US. There is no way in holy hell that you could possibly understand. And don’t try to….sometimes being a friend means that rather than saying too much…you keep opinions to yourself and you just say: “if you need an ear, I’m here!” Then just BE AN EAR…not a mouth. Just an ear.

    I think your intentions are good, but you’re not going about it in the right way.

    Britta Rothert Reply:


    Okay, you are right, I shouldn’t have said anything. I apologize.

  • Britta Rothert says:

    @ PrincessJenn:

    Yes, it’s the truth. From your viewpoint.

    And how shall I say it – then – from mine?

    The whole thing is only about a word that doesn’t exist.

    Could I say: I “undernotquitestandbuttheoreticallydo” ?

    If you say I don’t understand, then – for me – it means: You tell me I am just the same as all who never spared a thought about what it might be like to care for your special needs kid.

    When Andreas tells me: “I am mad with fear my son could die of a heart attack tonight!” I just say: “I understand. I am with you in my prayers.”

    Then Andreas says: “I am glad you are there.”

    But here are people who want to slap me for just the same thing.

    Heather Reply:

    @Britta Rothert, And while I’m at it….let’s put that shoe on the other foot… (I’m not trying to be ugly or anything, just trying to get you to see our point).

    Britta, you have a child who is completely “normal” and healthy. I can’t tell you I know how that feels, because I don’t. Your child can go eat an apple or a candy or a pizza whenever…mine can’t. So I can’t tell you that I understand or feel in any way how that is, because I don’t relate to that. I can WISH my child could do that, but he doesn’t. And that’s OK. It’s OK for you to have a healthy child. It’s OK for my child to not eat. It is what it is.

    Britta Rothert Reply:


    perhaps I think it is different because I was in such situations, only they aren’t all linked together. I know how it feels if your child is nearly dying (even though I only experienced that briefly) but you don’t know how it feels to have a healthy child.

    But: If you tell me you know how bad it must feel to never have been able to succeed in any job because you can apply other situations to this one, I would agree.

    But – of course – it IS okay for your child to not eat. It is what it is. That’s right.

    Britta Rothert Reply:


    The missing language is the missing link, perhaps … or can I put it this way: I can NEVER, NEVER, NEVER feel the intensity, the multitude of facets in your life … I can only imagine what it would be like if I was in your shoes.

    But that I can do – unlike many other people who just say: I don’t care. I am glad that I can look the other way when I see “those kids”.

    For me your kids aren’t “those kids” but full members of society whom I want to get to know. Whom I want to learn to treat equally.

    I am terribly sorry about not being able to put it differently.

  • Britta Rothert says:

    I know how it feels when you think the floor opens and you are falling without an end.

    I know how it feels if your child can’t breathe and the docors give her oxygene steroids but don’t know what caused the problem.

    I know what it’s like when you sit there crying into the hospital pillows beside your daughter’s bed because her breathing trouble has become worse and your spouse just told you that he thinks we’d be likely to go home WITHOUT her it it didn’t stop immediately.

    I know how it feels if you are entirely overwhelmed with the tasks you are to accomplish but really can’t.

    I know how it feels if you are depressed and would rather die than live.

    Only all these things weren’t linked to one special thing like motherhood for me.

    That I only experienced when my daughter was in hospital having trouble breathing.

    We were VERY lucky she went thorugh this without getting seriously ill. But that doesn’t change the fact that I know how it feels.

    Then there are my own shortcomings. Things I can’t do that most of the others can. My years of depression from 20 to nearly 40.

    If you told me you knew what depression is like, for instance, why shouldn’t I believe you?

    Only because you don’t know how it feels if you were never able to succeed in any job because of that and many other shortcomings?

  • jenn, one of the things i value most about our friendship is that you always make me think. i’ve read this post a few times since last night and i’ve read over the fb conversation and britta’s comment a few times as well. what i can’t seem to get past, even with the comments and further explanations above, is that first line of her comment when she outright says “i can.”

    she can’t. i can’t. no parent who has not stepped directly in the shoes of parenting and caregiving for a special needs child can. we can’t get it and we will never get it. that’s the simple truth.

    there’s nothing right or wrong about that. there is no judgment in stating that fact. there is no comparison when it comes to parenting… you can’t compare things that are so vastly different. it is just a simple fact. she can’t get it. i can’t get it.

    there are stories you have shared with me that just blow my mind. and i tell you that. there are circumstances you and bil encounter as vista’s parents that i will never come to know with jackson. and that’s ok.

    what is not ok is when people (britta) take it upon themselves to assume that they know what it must be like to be in someone else’s shoes. that’s risky. chances are that you’re going to offend someone, offer incorrect information, and ultimately take on something that is not yours to take on.

    the original post had nothing to do with britta. nothing at all. and in saying those two words, “i can,” (thereby asserting herself as someone who does in fact “get it” when she cannot) britta made the original post about herself and her parenting.

    shaky ground. shaky, shaky ground. and not something that any parenting community, special needs wise or other, needs.

    sometimes it’s ok to say “i don’t know,” or “i don’t get it.” and sometimes it’s ok to say nothing at all, but just to listen.

    Heather Reply:

    @nic @mybottlesup, I love you. xoxo

    nic @mybottlesup Reply:

    @Heather, love you mama.

  • PrincessJenn says:

    “sometimes it’s ok to say “i don’t know,” or “i don’t get it.” and sometimes it’s ok to say nothing at all, but just to listen.”


    And I agree with Heather. I love you. xoxo

    nic @mybottlesup Reply:

    @PrincessJenn, love you too, my friend. such a great job you did with this post. it couldn’t have been easy. well done.

  • Britta Rothert says:

    No, the original post is not about me and my parenting.

    I am a nobody for you and did not mean it that way.

    For me there are four groups with any special thing in life:

    1. insiders, 2. those who do not care about that thing and do not want to be bothered, either, 3. those who do care but have always had lives that ran smoothly so they have no imagination about anything but their own life that they think is perfect, and, 4. those who can imagine things apart from their own experience.

    You are right. My parenting is poor and hasn’t anything to do with yours.

    No I know what you mean. And I am sorry to have offended you.

    However you didn’t get why I wrote “I can”.

    You wrote “nobody can”. Then there cannot be any understanding between any two persons in the whole world.

    But as you wrote that, I now know what you mean: There are not two similar journeys in the world and never have been. And that’s right.

    To me it sounded like that: “We are SN parents and all the others out there will never care to understand us, i. e.: They will never bother to comprehend sympathetically.”

    And I wanted to say: I can comprehend sympathetically.

    If it hadn’t been for that I would have

    just listened

    just as you say.

    Or I would have put it differently.

    Because: I wanted some advice how to do better when I come into contact with SN parents next time.

    I know I was wrong! Of course it was shaky ground and of course I knew that and of course it was risky.

    You cannot learn anything if you aren’t willing to take risks.

    Yet it was the wrong kind of risk.

    I did not know why I misunderstood the whole thing. Now I know. Thank you.

    I apologize.

    And I have learned an important thing about facets.

    Again I say: I am sorry! My intention was to change something for the better. Not to hurt anyone.

    And I really didn’t make the whole post about my parenting. My parenting wasn’t subject of that at any time.

    I am just a nobody in comparison to all of you.

  • Al_Pal says:

    Wow….As a non-mom, I can’t even imagine. Wishing you well.

  • Bil Simser says:

    There’s another element to this “I can imagine what it’s like…” that I’ll toss in for conversation. With V we have yet to go to a movie. Not because we don’t want to, not because she won’t sit through an entire one, but for the simple reason that we feel sitting in a dark theatre with a loud sound system might trigger a seizure. It sucks, but it’s part of our lives. Its the part that underneath the reality of dealing with getting dressed and eating and keeping her happy and going about the day doing whatever it is we do, there’s that gnawing element that under the right circumstances (and they can change from day to day) we might be back to dealing with a seizure. With V she’s not a Grande mal kid so she sort of zones out, is unresponsive, and generally quiet afterwards. It’s difficult to detect and hard to nail down. However there is that underlying reality that we deal with every single day that at any given moment with the right lights, smells, and sounds that explosion in her brain might go off. That is the reality we deal with and ours is just as unique as everyone else’s that has seizures. No two are alike or are dealt with the same way or can be put in a textbook and written off with procedure. Sure there are common elements and there are triggers we think about avoiding (like the movie theatre). However unless you live through it each and every day, there’s no way you can imagine it. You might be able to relate it to something similar but like I said, we live with this reality every day and every day is is present. Lurking under the surface with the chance to rear it’s ugly head. We don’t plan to have them but have to be prepared if they do, and watch for signs that they might be coming on (like when she has her meltdowns and is balling for an hour because her room we changed out 6 months ago is different). I can’t relate to things I haven’t experienced and I don’t see how anyone else can without living in the trenches like some of us do all the time.

  • pgoodness says:

    Jenn – I barely skim the surface of knowing what you or Dawn go through on a daily basis. But I will say this – my heart doesn’t break for either of you – it busts wide open with admiration and the obvious love you have as mothers for your children. It’s easy to say “Oh, I couldn’t do that”, but I’m certain you never set out to be a special needs parent – it happened, you’ve learned and still learn daily, just like any good parent does/did
    with whatever obstacle she faces when it comes to her children. Do I know what it’s like for you? Hell no. Do I feel for you and send good thoughts and get scared when you are? Yes. That is friendship and common mom bond. Could I take your place for a day? I doubt it, but I would try if you asked. :)

    I was lucky enough to meet Dawn’s J and I’ll tell you this – that girl is certainly special. She’s bright as the sun, smart as a whip and cute as a button (I think I just turned into my grandmother there for a sec!). I was impressed by Dawn and the way she was perfectly matter of fact about everything. I didn’t want to treat either of them anything but “normal”.

    Special needs to me means just that – needs that are special, or different than another person. I don’t that’s NOT normal, it’s just different.

    And in one of those rambling comments, I think I read something about protecting special needs kids from society? By saying that, acting that way, that IS the problem. People need to start with themselves – lead by example.

  • Britta Rothert says:

    All of you are perfectly right. And I have read such letters and depictions a hundred times … that is why I stand in awe in front of you … yes, you didn’t choose it, it just happened, if it would happen to me I would have to live with it an learn every day as well – BUT I think I would be among the less awesome parents then.

    Of course I cannot know how it feels for any of you. I just didn’t mean *that*. I am awfully sorry to have put it that way so it could be easily misunderstood.

    There are people who say: Look there is a mom of a kid with special needs. And she is home the whole day. She could volunteer for some additional work, as she has only one kid. I only see her go out with that kid once a day, and she is back two hours later. Or on some days they just stay home. She must have plenty of time.
    These people don’t imagine anything.

    There are other people who say: It’s a lot of work. It’s a big assignment. It’s different for each family, but they all have challenges which we do not have: Many doctor and therapist dates, many hospital stays, special feeding and therapy programs every day, meds that have to be carefully handled and can cause additional difficulty, fears and anxieties as to if the programs will work out, if their kids will reach their milestones, yes: even if their kids will survive – and lots more – things, that are unthinkable for us, UNIMAGINABLE.
    There are many, many sleepless nights, exhaustion, sorrow and grief – but also hope and joy. There are the challenges on one side, and on the other there is the life with the respective kid – who is loved deeply and awsome and wonderful.
    There is the daily fight against the odds – and much less time for mere playing and enjoying the kid than in other families.
    There are routines – and things that can’t be estimated.
    There are dangers other families wouldn’t even think possible, which these families have to be aware of any day of their entire life – including the thoughts about the future.
    These families live a way more complex life than we do.
    There are people who see all these things, who are aware of these facts.

    I only wanted to say that I belong to that second group.

    I did it the wrong way and I am terribly sorry about that.

    As for the word “normal” … I don’t think I am normal. I don’t think normalcy does exist. But I saw you all have a different use of that word, so let me correct myself:

    We are all normal. And all of your kids are as well.

    Protect kids with special needs from society?

    I want them to not be segregated any longer! I have lots of acquaintances with handicaps, and they all tell me that their greatest wish is this one:
    They want to be accepted by society, they want to be judged by their abilities, not by their disabilities.

    I have always had that dream, too, that all people shall have equal rights.

    Every person is unique. All people in the world have their own talents, strenghs and weaknesses – and all have handicaps. Every single person is unique, but as for our human rights we are all equal.

    But what about reality?

    Those people who are considered as “the handicapped” by society are denied their human rights very often.

    They are not accepted. They are denied integration.

    Not only do they have more difficulties because of their handicaps, they are also handicapped by society, because we all don’t let them live normal lives.

    Including myself. And that is why I want to learn.

    Why the heck am I unable to see the smile first in a child who can’t walk or talk? It is so easy to see their abilities on the web – and so difficult if I suddenly meet them in person. Because this happens only once in a year.

    Some challenges are hidden from the first glance, but if they are not – I do have a big problem. In spite of craving for being one of those who help them to be accepted, I sometimes do the opposite.

    That’s why I want to learn to behave differntly. That’s why I need insiders to teach me.

    Yes, my comments are rambling. This is one of my weaknesses.

    Another one is the fact that I often overshoot the mark.

  • Britta Rothert says:

    And I know I hurt you by being arrogant and haughty.

    I didn’t mean to, I meant the opposite thing. Because my perception of feelings is different from yours.

    I was a “typical” child, but my mom wouldn’t stop to call me “lazy”, “clumsy”, “soooo very different” and so on. One of her fav sentences was: “ALL children can do this and this, O N L Y *YOU* canNOT.” I just couldn’t live up to her expectations. So, at twenty, I suffered from severe depression. My mom had also suffered from that, earlier. So I thought, for once, I’d have something she’d acknowledge. But she only said she had suffered more because she had ALSO worked at the same time and I did not.
    Back then – during all these years of suffering that followed – I only wanted people to understand me. I didn’t care if they had lived through the same thing as I did.
    I described my feelings and experiences, but there was no understanding. If someone would have told me: I’ve never suffered from depression, but I can understand you nevertheless – and showed empathy instead of trying to make clear they thought I was only pretending … I would have been happy.

    As that is still my perception of feelings and empathy, I made these awful mistakes that hurt you. So here I learned something entirely new.

    It is a bit like learning about emotions for some autistic people.

  • Bil Simser says:

    @Britta, What the hell are you babbling about? I cannot make out what you’re talking about in any of your responses. One response to the post should be more than enough for feedback yet you’re going down some deeply twisted rabbit hole. Give it a rest.

    nic @mybottlesup Reply:

    @Bil Simser, ::nodding::

  • Britta says:

    @nic @mybottlesup,

    I did.

    Jesus is my saviour, but I am not in the least like him. Instead of asking him for guidance I acted like Peter when he boasted to be able to follow his master into death.
    I was totally in the wrong and have heard the cock crow.
    Thanks for holding the mirror out to me.
    I am grieved. And I fully regret.
    I am not worth it to be friends with you.

  • Britta says:

    Have been a fan of your kids, though.

    Perhaps because of my disabled brother, who died before I was born so I couldn’t live with him but only with his memory?

    I don’t know, but I appreciate your kids. Really.

  • Bil Simser says:

    Hey batshit-crazy-lady,

    “Have been a fan of your kids”

    Okay, now you’re really creeping me out.

    P.S. Stop writing in poems or haiku or whatever it is that is compelling you to write

    a different








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