Disabled Lives Matter
Season 1, Episode 7
Co-Hosts: Nadine Vogel & Norma Stanley
Intro: [Music playing in background] Disabled Lives Matter… here we go!
Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!
Nadine Vogel: Hello everyone and welcome to this evening’s episode of disabled lives matter I’m Nadine Vogel your co-host along with.
Norma Stanley: Norma Stanley.
Nadine Vogel: My co-host, and this is going to be a really interesting session this evening, the reason for that is that, unlike what we've done in in most of our other episodes we're not going to have a guest, we are each other's guest. Norma and I you know we realize we're special needs moms we have a lot to say, and you know, depending on the feedback we get from all of you, we may find that we do more of these sessions. Norma, you and I are always getting you know, individually questions about all different things related to being a special needs mom, especially because our girls are 29 and 30 or 31.
Norma Stanley: Yes.
Nadine Vogel: You know, I hate to actually say that because it gives folks some idea of how old we are. But you know it gives us experience it gives us perspective.
Norma Stanley: Absolutely.
Nadine Vogel: And I think that's something that the younger moms and dads in particular could use to hear you know it's interesting I just got off a call with a group of individuals of four people, all of them are healthcare professionals, all have disabilities. So, there’s a med school student a doctor a nurse and a dean of admissions. And then actually a chief diversity officer of a system and just to you know have these conversations as much as I think their perspective is fascinating, and they thought mine was fascinating as someone who is you know has experienced so many hospitals and health visits with my daughter, as I know you have so let's just let's just shoot the shit you know. What do you think we should start with tonight.
NORMA STANLEY: Well, I think, to me, I know I don't believe in things as coincidences and I’ve been a fan of yours for many years and you didn’t know, but I was stalking you. Because you know you were doing all the things I wanted to do in terms of you know, the disability Marketing and with companies, and you know I understood you were a mom with special needs child also and I said now, this is somebody I would love to meet and learn from, and you know, I was going through my own period of not knowing what was going on left from right whatever. And then I just be grouped in and started coming back into my business, and you know you reached out to me, after my CD and I said wow and you said we have a lot in common, and I said, we really do I always wanted to work with you. And then the doors just opened, I said thanks lord.
Nadine Vogel: See, you ask and you shall receive.
NORMA STANLEY: And be patient, that was like sixteen years ago.
Nadine Vogel: Timing is everything Norma.
NORMA STANLEY: Everything, everything, but I’m excited because, yes, you know as a mom my daughter's 32 and yeah, I have no problem saying how old, I look pretty good for my age.
Nadine Vogel: You look damn good.
NORMA STANLEY: Thank you, thank you, but you know I’m thankful that I’ve learned so much and one of the reasons why you know what we're doing, I think, is kind of important because typically, younger parents who may be going through those challenges and not know that there is you know light at the end of the tunnel. And they can come through this better than they are, they may think they are right now um it does get better with time and you know our children my daughter was born with cerebral palsy and although. You know she doesn't talk like a typical 32-year-old and she had the same comprehension as a typical 82-year-old she is still living a full life she enjoys modeling she's a model she’s a fashion model in her wheel chair and you know she's having the best time and I’m happy that that's what I wanted her and I’m still her caregiver she's not independent, but the process was what I learned what I needed to do for her I can help younger families to maneuver that their own journey yeah.
Nadine Vogel: And it is a journey gosh it is a journey. So, I’m curious Norma, when Sierra was born, when Gretchen was born I got handed a poem welcome to Holland, did you get handed that.
NORMA STANLEY: I did not.
Nadine Vogel: Ah, ok so. Welcome, for those who don't know who are listening to this welcome to Holland well you know I’m just going to do it this way, you know as you're listening close your eyes and imagine for a second that you’re taking your very first trip to Italy, you learn the customs you get the guidebooks you know we're not in a pandemic, obviously. You learn the language you buy new clothes you plan for a year, maybe even longer yeah day comes right, and you get all excited you go to the airport to get on the flight it's a great flight, and then you land. And when you land the pilot comes on and says, ladies and gentlemen, welcome to Holland you think what I was going to Italy, I obviously got on the wrong flight. Just I’ll stay on just take me back and what you learn and what you're told is I’m sorry, Mrs. vocal you know you'll never be able to go to Italy, you will have to stay in Holland. And you know you grieve you see people going back and forth to Italy the flashy clothes and you're grieving for the fact that you can't be in Italy, but what you learn through this journey that you just described is that Holland is a beautiful place. Right, it has windmills, it has tulips and, yes, you wish, you could have gone to Italy, but you learn to appreciate Holland, for what it does, for what it gives. For me that that poem was written about 40 years ago by Emily Pearl Kinsley she was a writer on sesame street at the time when her son was born with disabilities and I gotta tell you a copy of that poem is in my purse.
NORMA STANLEY: Oh, can you please send it to me, I’ve never heard it.
Nadine Vogel: Yes, absolutely you know my daughter is going to be 30 and I’ve never left home without that poem and I share it with everyone because to me that’s the perspective.
NORMA STANLEY: It so is, it really, really is, and you don't know when you're in that moment when you're young and the babies are young that you'll ever be able to come to it, you know you do and in many cases, you come to a beautifully and that's why my daughter, I know for a fact I wouldn't be doing half of what I’m doing now, I was not that motivated I was you know, I was pretty motivated but not here. I mean I’m doing a lot of things I’ve always wanted to do because I realized she can have the best possible, if I don’t. And I’m a single mother because my husband passed away, her dad, 12 years ago I’m really going for all those dreams that I never really thought I'd be able to do back in the day, because I didn't think I just didn't think about it, it was all a Sierra but now it's like it's about both of us it's about us both maximizing whatever potential there is and living the best life we could possibly live to having a quality of life and helping as many other people do the same thing as possible, who will have children who have families like ours.
Nadine Vogel: yeah, you know it's true. I remember, we had some well I’ll say ex friends that after Gretchen was born, you know they were like oh, you know you and Doug you were the perfect couple I heard about your daughter I’m like so what does that mean are we less than perfect I was, I was so confused and upset by that to be perfectly honest and when you have a child born with disabilities you learn who your real friends are. Because many just run. They run for the hills, you know, we had one woman who was afraid you know when she was pregnant, that she could catch whatever Gretchen had I it was just it was ridiculous. And you know I remember that you know they didn't think, Gretchen spent three months in a neonatal intensive care unit, she was born full term, but nobody knew she’d be born with disabilities and she came home with round the clock nursing had nursing at home till she was 13 through a gastrostomy tube till she was 13. Didn't walk or talk till she was about six and that was initially with a walker she entered middle school at a second-grade reading level, but you know fast forward she's a four year college graduate. She lives independently she drives she walks she talks; she will have lifelong disabilities. Lifelong issues, but again it's perspective, and I think you said so beautifully before it's about that our children, no differently than any other parent right we want the best for our kids to have the best possible independence or quality of life that's possible for them and that's going to be different for everyone.
NORMA STANLEY: Everybody.
Nadine Vogel: Whether they have a disability or not, how many kids do you know or how many people do you know who have adult children who the kids have had no disabilities and then suddenly have a mental health crisis and die by suicide, everybody has something.
NORMA STANLEY: Everybody and it's so important to people to realize that African American Community or the alias or all these other communities it's not a monolith. Every family every group individually, you find your own way. But by having people who understand the process and the journey it helps make the journey itself a little easier. And that's one of the things that I’m so thankful that you're part of this year, my exceptional parents celebration that you know to speak on that foot, especially for the younger families most challenging I know that mother's day when my daughter was going up was a very sensitive time for me, and I never shared that with anybody that I was going through it but she didn't know it was mother's day.
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NORMA STANLEY: and my whole life revolved around her and she couldn't tell me how she felt about me being her mom it bothered me when I when she was a young girl.
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NORMA STANLEY: And, and you know I mean, every now and then I still get choked up about it but our goal was to help other mothers going through the same thing. to feel uplifted and encouraged that they can do this we're in this together and it's going to be okay, and so now is no bad so good, because you know, sometimes that gets Mattel some of these things and mission to make the. Parents we’re reaching out to now and we're hoping that you know it encourages lots and lots of people lots and lots of families.
Nadine Vogel: You know, absolutely and you know the other thing is that most people don't realize that there's a divorce rate upwards of 80% in this special needs parent population there's a lot of shame and blame and guilt and all kinds of things you know, and unfortunately it just is what it is and you know I’m very happy to say, you know my husband and I have been together since we were 14 years old.
NORMA STANLEY: Ok, we have more in common. My husband, we were teenager sweethearts to. We were married 25 years before he passed away. But that’s another similarity that's interesting.
Nadine Vogel: Absolutely, and you know, my husband and I will be married oh my gosh so we got married in 85 I can't even count. 95 05 2005, 40, 40 something years. I can’t count anymore, but you know it's a long time and you know you became a single mom not because of divorce but because of the death of your spouse and that's another you know component of your life that not only you had to grieve but not understanding, perhaps how your daughter was grieving because she couldn’t communicate.
NORMA STANLEY: Well, you know I do remember very vividly when we went to the funeral and my daughter and her dad Stephen they were close they were very close and she didn't understand he was gone she kept trying to get to him. I had to pull her back. That just got to me but, but it was painful also that she didn't really understand because she didn't grieve like a typical child would grieve, I would hear her calling her daddy in her room because that's two words she knew how to say was momma and daddy and eat. First, I was like okay what's going on, because she was having a conversation with somebody in our own little way of speaking and she’s speaking to an angel in the room, with her, so I was able to feel much more comforted by that. But you know there's so much that we think that they can't do, and then you find out they can do a lot more. But at the same and there's so much that they are protected from at least I tried to protect her from it, because she doesn't know she doesn't understand so it's a purity it's a feeling of what typical children don’t. She’s just happy. And that’s a blessing.
Nadine Vogel: Right, right.
Nadine Vogel: Absolutely, absolutely you know it's when my, when my daughter turned 12. She got into this state of why me because she did know. And you know, there was unfortunately look there's always bullying, and you know school and middle school but hers was even more so, and she really started, you know dealing with why me and I bought her a book that, to be honest, she hated. It was it was written for children, but it was called it could always be worse, and it was trying to give her perspective that as much as she was going through, it could be worse, you know we'd go to an orthopedist office, and she had orthotics on her feet and her legs hurt, but I would show her a child in a wheelchair. And you know she had a G tube, and I would show her child, who was on a vent and you try to give her that perspective. But it's hard when the kids are young, because to your point you know as adults it's hard on us right and it's something that I believe that you know it's not what happens to you in life it's what it's what you do with it, that matters, and I think that that's what you and I have worked also to teach our kids. In whatever capacity, they can do something. That's what that's what makes it all okay that's what brings that quality of life.
NORMA STANLEY: Absolutely.
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Nadine Vogel: And you know I don't know if you heard about this, but I was like crazy when I heard this, there was a recent study where medical doctors were interviewed. And about treating patients with disabilities and the assumption on their part that with individuals with disabilities have a lesser quality of life. Therefore, the health care disparities, the way in which they treat the patients are different.
NORMA STANLEY: Yeah, right.
Nadine Vogel: I was just, I was appalled. But you know even goes back to things and I think you and I touched on this not too long ago we were chatting that. Is that when Gretchen would go into a hospital or in some health care system, you know the nurse and the doctor would say hi mom hi dad I’m like I’m not your mom, I’m her mom.
NORMA STANLEY: Mhm.
Nadine Vogel: Or they would talk to me, instead of her even after I said she can talk for herself she can see, so with Sierra it's different but for Gretchen the assumption, they just make this assumption that she can't do that and I’m like what is that about.
NORMA STANLEY: Exactly. Exactly it is frustrating, and you know that's something that I don't understand also is that you know in all these years there's certain things I feel should be in place. That doctor should listen to the mother and the mother says my child is not developing the way they should be, I read any books, when you're expecting all these things and I knew that she wasn’t looking in those first few months the way other children are supposed to be developing that when I was a company I was at the same time, two other mothers whose children were like a month apart from mine and they were saying all the things that their children would do and I’m like Sierra isn’t turning around and turning over, and all this for months and they say she’s going at her own pace, her own pace, it wasn’t until she was nine months old they referred me to a neurologist that said, you know, she had developmental delays and other therapies and then they said at 12 months that she had some CP but you know you would think they'd be able to see this lot younger. It shouldn’t take too long.
Nadine Vogel: Right absolutely, absolutely. Well see, Gretchen actually till this day goes undiagnosed, but they knew immediately when she came out and knew something was wrong and they called the neonatologist, but you know it's funny you bring up the book what to expect when you're expecting I lived by that book right, and then it was the one I really lived by, what to expect I think it was during the toddler years or something and I had a love hate relationship with that book. Because I would read what was typical right the different milestones. And if she wasn't achieving them, I got crazy I was calling the doctor and you know I knew in truth that she probably wasn't going to, but I would cry. So, like I would cry, and my husband would say Nadine stop reading the darn book. I was like you’re right. And don’t you know the next morning I was picking the book back up and messing with her head and you know doing all these things again. And it's tough, because you know the barriers for me the barriers in society, relative to disability are not really the, I mean yes there's this physical barrier for people who use wheelchairs and all kinds of things, but at the end of the day, from my perspective as a special needs mom the biggest barrier is barrier of thought. Right, and bias. And people don't want to believe that their bias and not everybody, you know, most people are not trying to be mean but, they just haven't had the same experiences and I don't know how to react or act but that bias then turns into that barrier of thought. And, as a result of that people say and do really inappropriate things. You know, when Gretchen first started elementary school, I remember so she wasn't she wasn't walking she had just learned how to lower herself from standing to a floor and just started walking with a walker. And we had the intake process she was going to kindergarten and they came back with a recommendation that she should go to school in a wheelchair with a helmet. And I said, but she doesn't need a wheelchair she walks with a walker and there's nothing wrong with her head, why would you have a helmet on. But what I quickly learned is because they were concerned about their own liability should she fall or something rather than let her develop this typically as she possibly can, and actually help her develop way rather than caused her to be a self-fulfilling prophecy and they say see I told you; she could never do it.
NORMA STANLEY: Right. Right.
Nadine Vogel: And that self-fulfilling prophecy piece is so upsetting to me because to me it's their way of saying you know I’m the expert, I know, and then they can say after, see, I told you.
NORMA STANLEY: Mhm. But like you say, if they would just listen to the mother. And because we know best, I mean I know we're not medical experts, but we are paying close attention to the bulk of our children, and we know when something a little off. And they just don't listen, in my opinion, the way they should listen and once they recognize our thinking all the time that there should be things in place that can help the parents, a lot more than I’m seeing even after all these years after having Sierra still so much not in place at the ground level it just boggles the mind and because I think a lot of families would have an easier time understanding and accepting and you know maneuvering the process. Everything I learned, I learned from another mother.
Nadine Vogel: Absolutely.
NORMA STANLEY: I had a handle on what was going on with my child.
Nadine Vogel: Well, look, as parents, we are as you said, we may not be medical experts, but in truth, we are the experts on our children.
NORMA STANLEY: Yes.
Nadine Vogel: We’re the ones that are with them 24/7, and you know I remember a neurologist wanted to trech my daughter Gretchen when she was a baby and I said, you know what you'll have to cut my throat to get to hers.
Norma Stanley: Okay.
Nadine Vogel: And he was like what and I said she doesn't need a trech and he's like and who's the doctor I said on her I’m the mom doctor.
Nadine Vogel: Right, and you know, at the end of the day, you know, Norma at the end of the day, it's going to be you it's going to me we're going to be standing and looking at our kids and saying, did we do everything we could to make them the most independent happy healthy kids possible. Those doctors aren't going to be standing there with us.
NORMA STANLEY: That's right.
Nadine Vogel: Right, and to your point, you know you learned everything from the other moms you know Doug and I had belonged to a support group, a Parents Support Group and that saved our lives. If not for that support group, and we're not really support group kind of people kind but oh my gosh that was, thank goodness.
NORMA STANLEY: Exactly I would not, we weren't those people either, or you know the thing is my family didn't understand because Sierra was the only person that they’d ever known that had that.
Nadine Vogel: Same here.
NORMA STANLEY: So, they didn't know how to handle so many different things and um it was challenging for them, and like you say they loved her, but they didn't know what to do, and then you know so yeah. And that's what always cracks me up because people think that I’m some superwoman it's like I’m just being a mother. This is how I know how to do it, I don't know you, it’s not that serious.
Nadine Vogel: Right. But you're right Norma, you know your just being mom right, you move forward because you know when something like this happens, you either can move forward, or you can just crash and burn. And, if you don't move forward, then what message are you sending to your child. But if you do move forward, like you've done and have so many successes, then your child sees that and can model and emulate that for themselves, I always told Gretchen you know someday we won't be here. I need you to develop a thick skin, I need you to become a self-advocate in whatever way you can and let me just tell you she's taking it to the enth degree, she could use a little less of the advocate. Because I gotta tell you Norma, she uses it with me. She uses it with me, she uses it with everyone at work, so sometimes it goes a little overboard but at the end of the day we're not going to be here for their entire lives.
So, what is it we can do to ensure that in whatever capacity, they can speak for themselves or that we put people in place who can emulate what we've set as standards and follow that after we're gone?
NORMA STANLEY: That's right and they’ll put all those things in place so that we know you know the trusts and the person who would execute trust and all the things that we know to do you know what it’s still my prayer that if one of us has to go that she goes first, although I would love to be here, but I don't want I can imagine somebody else taking care of her.
Nadine Vogel: You know I have to tell you I have had so many parents say that to me. They hope that the child goes first, and you know it hurts my heart. It really hurts my heart to hear that and it to this day. But, I understand.
NORMA STANLEY: Well, let's put this way, I know who I am with her. You see how I dress; she dressed the same way but they're very stylish. Her level of quality of life, such as not even typical cousins you know they just don't have the same kind of opportunities and I want it to stay that way and I'm not sure if it will, if I’m not here.
Nadine Vogel: No, no, I understand.
NORMA STANLEY: Even with her extended family her aunts or uncle's or you know, perhaps other I don't know so I believe me, I’m getting up in age you know I’m in the early 60s and now it's like I just pray that I’m healthy and you know stable enough to be able to do what needs to be done to take care of her as we both age.
Nadine Vogel: And that's look, that's just our reality right.
NORMA STANLEY: Exactly.
Nadine Vogel: That's our reality, and you know it was years ago Norma, there was a program and it was a high school graduation and all the all the children that were graduating all the students graduating all had disabilities fairly significant disabilities. And they had some media there, it was some really well-known school private school, and all the parents were crying. And so one or two of the parents had gotten interviewed and the reporter said. Oh, you know those must be tears of joy to see your child graduate and you know, not everybody thought they could do that, and you one of the moms I remember, she said, you know, yes, they are tears of joy, but actually their more tears of sadness. And the reporter was taken back like what, how could you say that, and the mom said, you know when they're in school they're protected. They have they have their day accounted for they have support they have therapy now what. Now what my child’s an adult they can't go into you know, a facility that's for older people, you know daycare kind of thing for elderly. They can't get a job, what on earth are they going to do, I can't if they just sit home all day and do nothing to watch TV then then that's no quality of life, oh my and everyone by one, the parents echoed that, and you know it just again is another point of reality, you can't just lump special needs parents all in one right just like you can’t lump people with disabilities all together. You and I have similar paths, but certainly because our kids as they've developed to develop differently, the paths are different. But at the end of the day the issues are so much the same they're just you know different levels of it but their so much the same. And I want to make sure that any parent, special needs parent, that's listening today that they know that they can reach out to us. That they can attend your event that's coming up its virtual because it's that important it's that important for us as moms for the dads for the kids.
Yeah, it's tough and you and I know it, it's tough.
NORMA STANLEY: It's tough but it's a beautiful journey. You know all of her accomplishments their invested in my brain. And her grandmother, her paternal grandmother still here my mom passed on, but you know it's been a beautiful journey, and I think just her being here has helped the rest of us to maximize our potential and our realization that hey you know what. Go for it, because you know, like. make it happen let's see what we can possibly do and make a difference and so I’m hoping that that's what happens with all of us.
Nadine Vogel: Well, I'm glad you said that, because for our listeners who are not special needs parents, but maybe the grandparents the aunts the uncles and friends. You know here are words think about how you can reach out and support that sister brother cousin niece or nephew or perhaps you know you're not a family member but you're a neighbor of know right get perspective or maybe you're an employer and you don't realize that almost 10% of your employee your workforce are parents like me like Norma and think about understanding some of our unique needs and how you can better support us because I gotta tell you Norma I know you're going to know this, we are the best at multitasking, at innovating and figuring out issues and know if someone says no that just makes us work that much harder.
NORMA STANLEY: Absolutely.
Nadine Vogel: And so, the audience is so big right that we all need to come together and find ways to support and especially now during covid, I mean that's just added a whole other layer. So, we've had so many special needs parents tell us you know, yes, my kid is being homeschooled like other parent’s kids, but I don't know anything about teaching special education or my child is on the spectrum and they can't sit still at the dining room table for an hour two at a time, so I can get work done. Right, or they're on a ventilator a feeding tube and there’s medical things that have to take place and I can't get someone in the home to help. I mean so again, even that has added a layer of complexity.
NORMA STANLEY: Sure, has and it's a real situation that people need to understand. You know, like you say try to provide support wherever possible, I know, when I you know Sierra was young, I lived in New York, I was here in Atlanta and you know, like you say not all the girlfriends, not everybody can handle it, and if you could just have you know, having a weekend I didn't know about respite until she 14 years old.
Nadine Vogel: Oh my gosh oh yeah oh my gosh.
NORMA STANLEY: Exactly, and so things like that you know, having a weekend debate with you can just go with your husband to de-compress a little bit those kinds of things are putting. So yes, family members friends who can take the style for a few days or a week. That’s amazing.
Nadine Vogel: Oh yes, absolutely. And again, you know sometimes they say don't sweat the small stuff. But when you have a child with a disability there's a lot of big stuff. But you still have to sweat the small stuff too because it's that important the small stuff if you don't pay attention can become big stuff. So you know, making sure that while you're taking care of your child you and your spouse take care of each other or taking care of other children, so the rest like you talked about, or you know going out to dinner once a month or whatever it may be oh my gosh Norma you know what, talking to you, I feel like I’m talking to a psychologist I mean really.
NORMA STANLEY: We’ve had a good time talking together.
Nadine Vogel: I know we're like we're like each other's little support group. But, but I, my gosh we already ran out of time which is amazing. So, what with Norma and I would like to do is here from you, our listeners. And if you would like to hear more about this really or any topic. You know, let us know we can do more sessions, we can focus on very specific topics from a mom or dad's perspective or whatever it may be so just let us know, but for today this was disabled lives matter and again remember it's more than a podcast it's a movement and I just want to thank you Norma for being my co-host, for being my friend, and we will see you next week.
NORMA STANLEY: Thank you and we'll talk soon.
Nadine Vogel: Okay bye everybody.
Norma Stanley: Bye-bye.
That was such an impactful episode, that we would like to end with a reading of the essay mentioned during the podcast.
"Welcome to Holland" is a prominent essay, written in 1987 by American author and social activist Emily Perl Kingsley, about having a child with a disability.
The piece is given by many organizations to new parents of children with special needs.
And it goes like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!
I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look around...
and you begin to notice that Holland has windmills...
and Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy.
And for the rest of your life, you will say "Yes, that's where I was supposed to go.
That's what I had planned."
But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special,
the very lovely things ...
copyrighted 1987 by Emily Perl Kingsley. All rights reserved. "Welcome to Holland"
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