Archive for the ‘parenting’ Category


You know what I just realized? I write a lot about disability and advocating for disabled individuals. I write a lot about acceptance in disability, whether you’re a parent, friend, coworker, or even someone who has never met someone with a disability (that you know of); and yet I’m not sure that I’ve ever explained in the simplest of terms what a disability is.

I just get so fired up.

Disability is a physical, neurological, or mental condition that limits a person’s movements, senses, or activities. It may cause impairments, infirmities, and disadvantages, to performing activities in society due to the barriers that exist.

What I try to address is this:

Barriers exist not because someone is disabled, but because society as a whole hasn’t figured out how to:

  • Fully accept disabilities as normal and nothing to be ashamed about
  • Fully accommodate all disabilities and invest in the people who have them
  • Incorporate Universal Design so that ALL PEOPLE may participate in ALL ACTIVITIES equally

And those things are important because people who have disabilities are PEOPLE. People who are deserving of being treated with dignity, respect, grace, and equality to be viewed as valued members of society that contribute as equally as anyone else can.

This is a lesson that you’ll learn well when you become disabled through an accident, illness, or age if you’re not presently disabled.🙂

 

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Are you a Cat Person or a Dog Person?

I get all sorts of answers with this question offline, and usually stories to go with it. Hence the poll! I’d love to see your stories along with your answers.

There doesn’t seem to be a true middle ground anywhere for a lot of people. Most people care about their answers, and people who care about the answer are SO! EMPHATIC! AND! PASSIONATE! That’s great, I love passionate. I’m passionate about my animal companions. I love them, so I should be passionate about them and I like to see that same emotion in others.

My answer is complicated. I’ve had hamsters 🐹, and I like hamsters but they’re fragile. I’ve had fish 🐟🐠🐡, but fish don’t cuddle and I always end up killing them in spite of my best efforts.

I’ve always loved cats and took the plunge nine years ago. As a child, I was somewhat allergic but my dad was Seriously Allergic. No cats in the house. I still knew I needed cats in my life. I’m most emphatically a Cat Person. I’ve always taken pride in being a Cat Person. I’ll have cats for the rest of my life. I need them. 🐱

Now that our family has a dog, and I was a willing participant in adding Leo to the family, my answer to “are you a cat person or dog person” is more complicated. I thought that having a dog would teach me that;🐶

  1. I was also a Dog Person
  2. I’d learn some innate truths about dogs that would help ease my anxiety about Other People’s Dogs
  3.  I’d learn to love all dogs equally
  4. Training would get easier as time went by

So far, nope, nope, nope, and nope.

I’m not a Dog Person. I don’t love every dog. That’s what would make me a Dog Person. I haven’t learned any innate truth about dogs except that they can assholes just as much as any cat can, except it’s kind of funny when cats are assholes. I will always have anxiety about Other People’s Dogs. I love MY dog, and dogs that I’m relatively close to who are well behaved.😉 Training is going well, but it’s often slow going and it’s not getting easier. I know he’s essentially a toddler verging on adolescent, and he’s teething, but holy HELL that boy ate the Bible this morning. And he did it because I didn’t give him the attention he wanted when he wanted it because I needed coffee that I never did get to make.

No, as a matter of fact, Leo has NOT learned the benefits of coffee ☕ yet. He knows it smells delicious and he always tries to steal it from me, but he doesn’t understand that my coffee saves his little life every morning. He’s willful with a huge personality and a ton of intelligence, but he hasn’t figured out the coffee thing. The cats figured that out right away, almost as quickly as my children did.

I’m a Cat Person who loves her own dog. There’s no doubt I love him. He’s silly, bright, energetic, happy, healthy, but he’s becoming a teenager at 12 1/2 weeks old.

Now, I enjoy silly puppy videos as much as the next person. I enjoy seeing friends and family share their photos and stories of their dogs. I enjoy learning about my dog’s breed, and a couple of other breeds I’m interested in. I’m developing an interest in learning about the history of dog ownership and training in America. But I’m not at a point yet where I can say that I’m a Dog Person.

My cats are definitely not Dog Cats, but they’re handling him a bit better now. It’s the barking that gets to them. They like to watch him and they’re learning everything they can about him. They’re just waiting for him to grow large enough so that he can’t fit through the dog gate that has a cat door in the bottom.

Here’s the maniac… errr… Leo.

Who did this moments earlier…

Which okay, fine, it’s NAS but still. It’s a Bible. 😋

 

 

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I’ve been sitting on this because it hurts my heart as the mother of an autistic daughter. It kills me inside. It makes me angry, sad, and wonder at the human race. It also makes me fearful and gives me those damned little worry lines.

I HATE wrinkles.

I hate it when ridiculous situations like this occur for absolutely no good reason. None at all. There’s no winner, especially when there was either improper training, completely inappropriate biases and prejudices, or both.

When One is Autistic and One is Black How Could the Officer NOT Try to Shoot Them?

/end sarcasm

 

Here’s the gist of it, because I assure you, no laws were broken and no one was disobeying any law enforcement.

An autistic man left the day facility with a toy truck, and decided to play with it sitting in the street. Where else do trucks belong, right? In the street. Logical and linear. The man’s therapist from the facility came out to help him back inside without incident. A seemingly good Samaritan called the police to come help, except it wasn’t just to get a disabled man from being injured.  It was how there was a dangerous disabled man from the facility had a GUN! and please protect the neighborhood. The therapist immediately puts himself flat on his back, hands in the air, and explains to multiple officers the actual situation, front to back. Except Mr. Happy Trigger decides he HAS TO fire his gun and aimed for the autistic person because hey, why not? He was playing with a toy truck in the middle of the street. That’s super dangerous when he’s not paying attention to anything because you know, it MUST be civil disobedience and worthy of being over. He aims his gun at the autistic man, he says, and he fires his gun three (maybe four) times at the autistic man who’s simply sitting there. A sitting target, mind you. He misses the disabled man and hits the black therapist in the leg. Who the hell knows where the other bullets landed.

Read that part again. The officer was actually aiming for the autistic person because he was playing with a toy truck in the middle of the street. And when the autistic person was ordered to get out of the street and was literally unable to comply, and behaved as if he couldn’t understand or hear the commands because he literally couldn’t, he wasn’t committing civil disobedience, he was behaving as a disabled person because he is disabled, Mr. Happy Trigger fired his gun.

At first he told the man he shot that he didn’t know why he fired the gun and shot him. Later he stated that he felt he personally was in mortal danger, and he needed to shoot the autistic person. He felt he had no choice but to defend himself.

He claims.

Yes he claims.

There’s a major problem here.

That officer’s trousers are ablaze, and everyone is choking on the damn smoke because that’s what happens when you speak untruths all over the place.

That police department has some serious issues and they need to decide which end is up because either:

  1. That officer was lying about regarding how he felt his life were in danger from the disabled man, and he fired at him anyway because he’s filth and is a really, really, really bad shot in which case why on God’s green Earth is that man allowed a gun?
  2. That officer was lying about trying to hit the disabled man and was really aiming for the therapist, in which case he was still lying about feeling as if his life were in danger since the therapist was laying on his back prostrate with his arms in the air and hey, he’s STILL a really bad shot
  3. That officer was afraid of a black man laying on his back in the street with his arms up, and an autistic man playing with a truck? A truck he knew wasn’t a gun?

 

If he was telling the truth… are we really that decayed as a society and still that unevolved that our police forces are AFRAID of disabled people that play with toys in the street? Or was it that the disabled man was autistic? Was that the magic word that made the officer afraid for his life? Autism?

I go there because I HAVE TO GO THERE. I go there because I have disabilities, and I go there because I’m a mother to an incredible autistic daughter. My brain has no choice because I don’t live in some fantasy land.

I know what the world is supposed to be like. I know what the Federal Laws are, and State Laws that supplement them and aren’t allowed to override Federal Laws. I know the fight that continues for Civil and Human Rights for disabled people, and the fight to be recognized as fully human versus being seen as Other and Less. I know the nightmares that people face every day in spite of the Americans with Disabilities Act and Title 9. I know that people can’t behave as if those Federal Laws fix everything, and society has fully accepted those laws.

I see people all the time who don’t even know that these laws exist, that give them rights to stand up to their parents and police officers and neighbors and landlords and employers. They don’t know that there are protections in place. They believe they’re really second class citizens because that’s how they grew up. And there are people who treat disabled people that way their entire lives.

There are police departments who train their officers that any appearance of disobedience, ignoring, noncompliance is tantamount to breaking a law and they’re allowed to respond to someone who isn’t even a suspect with force. Lethal force. Except lethal force is not supposed to be the go-to behavior.

I know far too many people who say,

“When the police ask you a question or tell you to do something, you do it. You be respectful. You obey no matter what. You obey anything an officer tells you to do at all times no matter what.”

It’s easy to say that, but it’s not how law enforcement is supposed to work. There’s supposed to be leeway. Compliance is not always an option because it’s not always possible.

There’s supposed to be compassion and understanding in spite of the officer’s past experiences of being an officer that excels in service. Having a previously spotless service record doesn’t absolve a public servant of an abominable act towards a marginalized person.

There are different reasons someone may not respond to an officer; there are different reasons someone may have awkward movements and motions. There are reasons someone may appear drunk and disoriented that have nothing to do with drugs and alcohol. Behaviors that might appear “shady” and facial expressions that might “look guilty” are often misread. There are different reasons that it appears someone isn’t obeying an order.

For people with disabilities these things aren’t a matter of choice. They’re a matter of disability. We can’t just shut off disabilities at inconvenient times, and yes, we’re allowed to leave our homes. After all, we don’t want to be a drain on your tax dollars.

Many people are not in the moment for one reason or other due to their disability. Interactions happen on the street when people think the disabled person is “being strange” and. People are paranoid and intolerant, and assume the worst. People are impatient with differences, physical slowness, and seeming intellectual disability. People don’t take care of others feelings, but expect their own to be catered to constantly and so they think that they’re being victimized by being looked at. Or they just notice weakness and take advantage. They steal more easily from disabled people. They make fun more easily. They get disabled people to do inappropriate things more easily making them think they’re going to be friends. Then, if caught, they blame it on the disabled person who has no idea what just happened. They think a toy truck is a dangerous object.

Someone who has particular physical disabilities could appear drunk even if they don’t have a single medication in their system if they’re made to try to walk a straight line. Or speech difficulties due to speech delays can make it difficult to answer questions quickly, or without slurring, in a manner that’s clear and concise. Compassion for none.

This is the kind of nightmare I have as a mother to an autistic daughter that is often unable to follow directions in the immediacy of giving them, especially if they’re presented in a way she doesn’t understand or by a stranger. She often needs things explained a different way than initially presented, but a lot of people who don’t know her are impatient at first. A police officer certainly would be. They would think she’s being impertinent if she thought to ask, “Could you ask that another way?”

As a young woman with disabilities, it turns out she really has no rights at all when it comes to the immediacy of being face with law enforcement if law enforcement doesn’t realize she’s disabled and they’re not keeping the ADA in mind. Her disabilities won’t be accommodated or even considered. If she can’t speak it won’t matter; her being non-verbal won’t matter a single bit. It will be viewed as noncompliance and therefore a danger to someone’s life. That will be justification enough for her to be cuffed or shot. And it will be her fault, of course, for being autistic and therefore dangerous.

It’s not our fault if we have disabilities; mental health, cognitive, intellectual, physical, TBI, chronic pain, hearing, anything. Anything at all. We can’t put our disabilities away into our purses, or into a drawer when we leave. We’re not being rude or thoughtless when we can’t overcome our disabilities like a rockstar.

We can explain as soon as an officer comes to introduce themselves and ask us our name, and it may not matter if they decide ahead of time that we’ve done something shady. They may have decided that a behavior they witnessed was “off” and needed their intervention, but it was actually due to disability. It could be explained to them but they’ve made up their mind. If a command literally… LITERALLY can’t be performed, it doesn’t matter. You’re DISOBEYING.

Do you know how many disabled people have been beaten and killed by officers because officers believed, and didn’t listen to the victims, that they were being disobeyed intentionally? That the disabled person was really a perp because they weren’t… couldn’t comply? There’s no difference between “won’t” and “can’t” because there isn’t any leeway for it.

There are in fact some police departments that care and are training their officers. It depends on the town and the departments. Some believe that the training and funding are worthless.

They have no idea that disabled people are far, far more likely to be bullied than non-disabled people; to be victims of abuse; to be victims of crime; to be involved in incidents with law enforcement. And when involved with law enforcement, disabled people are far, far, far more like to be victims and not the perpetrators. The reason it’s likely a higher percentage is because of abuse by law enforcement and misjudging situations where they assume that the disabled person is the perp because the real perp is manipulating the situation; and the disabled person is in a far weaker position if they’re being abused or the police are the ones exerting power. I want to say the percentages are in the 75% and 80%’s.

These fears are real. These things happen frequently. Yes, in this day and age in 2016. People are not enlightened, and they most often don’t really care. This is why parents fear for the day they pass away before their children and solid services aren’t in place; this is why parents fear when their governors cut funding to services that they federally don’t have the right to cut; why parents fear when siblings have washed their hands of their disabled brother or sister; or there aren’t any siblings, aunts, uncles, cousins willing to help out.

We fear that we won’t be around if our children become entangled in a situation that involves law enforcement in some way, especially if we have disabilities of our own whether we’re still young or as we age. We fear that our children won’t have an advocate at all; won’t have a good enough advocate; won’t know how to advocate for themselves.

It’s hard to trust a law enforcement system, a justice system, and a social system that repeatedly prove that disabled people are worth less than non-disabled people. When funding is removed forcibly and put into nonessential areas, such as bulking up a state official’s salary, it’s hard to trust.

 

 

Victim was therapist attempting to defuse situation with autistic patient.

Source: Black Man Shot By Police While Lying On Ground With Hands Up » Second Nexus

 

And:

Study Reveals Significant Overlap Between Police Brutality Deaths And Disabilities | ThinkProgress

And insufficient media coverage of these cases isn’t helping.

Source: Study Reveals Significant Overlap Between Police Brutality Deaths And Disabilities | ThinkProgress

 

 

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Double-Chocolate-Chip-Swirl-Cookies- from Sally's Baking Addiction Blog

Double-Chocolate-Chip-Swirl-Cookies- from Sally’s Baking Addiction Blog

Let’s Play Pretend

You’re a nutritionist.

You’re a nutritionist that’s advising clients about how to choose healthy and healthier foods when they’re out and they have very limited options. You teach them about basic ingredients; whole ingredients and whole foods; which ingredients are all right when refined and which aren’t; which ingredients to always avoid; how to read ingredient labels; how to prepare meal plans and meals. How to shop for groceries.

Your client knows that fruits and veggies are the best choices. Include them in as many meals as possible. Find fats and oils from as many natural sources as possible. Avoid low-fat and low-calorie labels. Avoid sugar-free labels and artificial sweeteners. Avoid artificial dyes and high fructose corn syrup. 100% whole grains. Real ingredients. Real food. As much as possible.

All in preparation for how to be able to choose between poor options, and when to refrain from any options at all; and when it’s not healthy to refrain from making a choice.

The Day Comes

One day they’re at a party and there’s a cookie table. Let’s say it’s a political party. An election, even. At the back of the table, the fruit and veggie trays are out of reach and wrapped up and not an option. Apparently the best options are for later.

There’s a plate of cookies that are simple sugar cookie. They look fabulous.

There’s one plate of cookies that are sugar cookies with caramel in the middle. Also pretty delicious looking.

There’s another plate of cookies that appear homemade, and they have some chocolate chips; in fact, these cookies have chocolate chips on one half of the cookie and white chips on the other half, but your client dislikes chocolate chips. He thinks they’re disgusting. They also have some sprinkles on top. The sprinkles aren’t completely natural or healthy, but that’s ok. It’s just sprinkles. You can flick those off if needed.

There’s another plate of cookies, but they’re clearly not homemade. They’re supposed to be pumpkin cookies with white chips, but they’re so bright orange they had to be pumped full of dye. There are fire-hot cinnamon chips in them, so hot they’ll make you gag, and Lemon War Heads and Jawbreakers on top. Clearly these cookies are vile, and not worth another look because every ingredient will make your client sick. There’s nothing natural at all in them. They’re completely toxic.

Your client walks away for a while to see what’s happening at the party, but when he comes back he notices that the cookies he really, really wanted, the sugar cookies and caramel cookies, have been completely eaten up. He was too late. All he’s left with are the chocolate-white-chocolate chip cookies and the pumpkin-nasty-ass cookies. He knows the pumpkin cookies will make him incredibly ill, and even have far too many ingredients in them that will make him sick and even have ingredients he’s allergic to… but he desperately hates chocolate chips.

So he eats the whole plate of fake pumpkin cookies stuffed with nastiness, just to avoid the chocolate chips in the chocolate chip half of the cookies.

And he’s so violently ill, he’s vomiting orange for four years and regrets every damned bite wishing he had eaten the half and half cookies.

I completely understand that cookies, on principle, are not healthy. That’s entirely the point I’m trying to make in what I hope is an obvious parallel. And I must note on a personal level that Sally’s Baking Addiction has the most bang-up amazingly awesome cookies you’ll ever bake whether you have a nutritionist or not. You’ll bake your own just so you have an awesome choice at a political party.

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I don’t get paid to write this blog. I’m not good enough. So take me at my word when I say, as a very hyper-critical caramel-in-coffee-but-I-love-it coffee drinker that this is THEBEST salted caramel… nay, caramel creamer for your coffee. 

I say this, admittedly, as someone who already enjoys Natural Bliss. It’s the only one besides pure organic cream that I can drink in my coffee without contributing to pain issues and migraines.

I was skeptical about the flavor before buying because so many caramel creamers leave a weird aftertaste. No worries. I’m not buying any other caramel creamer brands now.
COFFEE-MATE Natural Bliss Salted Caramel Creamer 

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During this past fiscal year of 2016, our illustrious Governor Malloy (D) has brushed off all responsibility of the financial crisis our State is in. Between April and June 2016 he laid off 1,064 State Employees. He plans 2,000 more positions to be eliminated. and more budget cuts. All of this to cover his mismanaged $960 million deficit. That he created.

I’m not talking about froufrou State jobs like calling someone in to give the Governor a toilet seat filled with coins and dollar bills in his private bathroom. I’m not talking about dragging around a coffee and fruit & bagels cart on every floor, or cutting back from six assistants to only three. Not that those jobs aren’t important to the people who hold those jobs. I love coffee. That’s very well established. I love a great barista. And I would kill for a good assistant. But I’m talking about jobs that are providing services to people in dire need.

People that have disabilities are the ones who are suffering the most, with children and families not far behind. Aging population that have disabilities. When I say disabilities, I mean significant disabilities. Families and caretakers of disabled individuals. So, we’re talking about people who need and will need services like this for children, youth, young adults, adults, and aging adults:

 

  • Sign language interpreters were just cut from services provided.
  • Health care workers at UCONN Health Center
  • Social Workers, already short staffed
  • Department of Mental Health and Addiction Services; mental health assistants; caseworkers;
  • Department of Developmental Services
  • Department of Children and Families
  • Education Employees in several important Technical Schools

And just for fun…

  • Department of GOVERNMENT ACCOUNTABILITY
  • Department of Corrections
  • The Judiciary Department
  • Military

 

People like this young woman Jenny are being affected immediately. Dangerously. But Governor Malloy’s response is that while it’s unfair, it’s our state’s economic reality.

 

Connecticut’s largest health care workers union took to the airwaves Thursday to protest ongoing state employee layoffs.

The commercial launched by SEIU, New England 1199 and airing on Connecticut stations and the internet, features a woman, identified as Jenny, who is living with cerebral palsy.

In the 30-second spot, Jenny, who “speaks” using a computer that reads her eye signals, makes a direct appeal to Gov. Dannel P. Malloy to restore her state-appointed speech pathologist, identified only as “Mallory.”

“My name is Jenny,” she says to open the ad. “I was born with cerebral palsy. This computer is the only way I can communicate. Mallory is the only worker employed by the state of Connecticut who knew how to customize this computer so my voice can be heard. On May 3, Mallory was laid off. Governor, please bring back Mallory and all of the laid-off state workers. We need them.”

Malloy and the legislature built big savings in salary accounts across most state agencies into the $19.76 billion budget adopted last May for the fiscal year that began July 1. Officials cut spending more than $800 million below the level needed to maintain current services to craft a plan that does not increase taxes.

More than 250 of the speech pathologists and communications therapists New England 1199 represents at the Department of Developmental Services have received layoff notices.

(Cont.)

Source: Union ad features disabled woman’s appeal to reverse state layoffs | The CT Mirror

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I don’t write about this often even though I’m sure a lot of you could empathize. Fibromyalgia and weight issues often go hand in hand.

The thing is, it’s usually not for the reasons you might think. There are many who have Fibro that are underweight, and can’t seem to gain no matter how much effort they put in to make sure they get a calorie packed diet. There are many who are overweight and can’t seem to lose no matter how healthful and active they are in spite of the pain.  I don’t know if people realize just how hard it is to have an appetite when you’re in moderate to severe pain 90% of the time. Pain suppresses the appetite. Many medications suppress the appetite as a side effect. With Chronic Fatigue Syndrome as a co-diagnosis, it’s hard to eat if you’re so fatigued you can’t even chew or blink, let alone cook a full meal or go grocery shopping very often.

The fact is that no matter how healthfully we eat and are active in spite of the pain and fatigue, we have to deal with the biology of the disorder and additional health issues and co-diagnoses that are part of the very real chronic disorder that has a mind of its own. We do the best we can when we can as often as we can. We just hope it’s enough.

I’ve been fat, and I’ve been slender. I’ve been in between too. People treated me better when I was in between than when I was fat. People treated me far, far, far better when I was slender than when I was in between or fat. Because due to Fibromyalgia, my weight blew up to 280 lbs on a 5’4″ frame.

Give me a moment to digest the fact that I’m divulging this sort of information.

When I was That Fat, people treated me shamefully in public. People, nurses, treated me shamefully in doctor’s appointments. People feel obligated to say nasty things about food intake and exercise, and apparent lack of willingness to conform to anything healthy yet have the nerve to complain about being heavy. It’s still acceptable to fat shame here in America because A.) people think it’s helpful to point out the fat and ugliness of it and B.) they think it’s motivational to be rude and mean and C.) some people just think it’s funny to shame people due to their size and act like bullies.

Since I started to lose the weight, in the typical Fibro start and stop fashion, I have dropped 85 lbs so far. This number is accurate as of 1 1/2 weeks ago. And let me tell you, I’m thrilled over breaking that 200 lb barrier. It took me six months to do that with tripled efforts, which means for me trying to fit in 2500 calories a day with as much full fat in whole foods as possible. I try listen to my body when the fatigue takes me down. Managing the pain, managing the relief so that I could move more easily has helped. A few months ago we got a wonderful new mattress so being more rested helps.

During all of time, with each 15 lb mark of weight loss, I see and feel a difference.

Oh, not a difference in how I feel physically. My pain is still there in full force and in fact I’m in far more pain than before I started to lose the weight I gained. That weight that never belonged there.

There’s a difference in how people are treating me and looking at me. People are offering me their places in line again. They’re smiling at me again, more smiles with each pound I lose. More doors being held open for me, where when I was fat, people made it a point of looking me in the face and letting the doors close.

There are people asking me if I need help. People are complimenting me out of nowhere lately on my clothes when I run errands after work. Strangers.

People are noticing my pain now. They are actually seeing my face. They see the pain in my face AND my body, and then they see my cane, and they’re kinder.

I’m not behaving any differently. I’m still me. The only real difference is my weight. This all feels good because I never realized before how kindly people treated me when I was slender. I sure did notice while at my fattest how poorly people treated me. I was invisible to many, less important. Even certain family members. Slimming out somehow is legitimizing.

That angers me a bit, but saddens me more. I think maybe I don’t need to explain why. You guys are pretty intelligent.

But guys… I’ve lost 85 lbs. I know I’m poopooing it, but I am happy about it. Maybe my pain isn’t better, but I know that my risk of Diabetes is down; my risk of Heart Disease is down; and even though I have very low cholesterol intake, my body was producing more bad cholesterol on its own while heavier. I was also drinking more coffee, though, which raises the bad cholesterol readings. Yes…. yes…. while still a coffee fiend I did reduce my coffee intake to two cups tops a day.

My next goal is 25 more. I know it’ll be slow, and that’s okay. If I never lost another pound but suddenly magically had Disney Princess hair, I’d die happy in old age (somewhere in the far future, I hope).

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