This Little Miggy Stayed Home

Monday, November 19, 2018

What's the Worst Job You've Ever Had?

A while ago my husband and I were telling our daughter's about the worst job we've ever had. My husband worked at the Albertson's deli in high school. The worst part of the job was cleaning out the deep fryer. Every night. Gross.

My first job was at The Gap in high school circa 1993. I would later work as a receptionist, a server in multiple restaurants, a painting teacher at Sundance Resort, I sold pest control door-to-door in Hawaii, worked for a tech start up after college, then motherhood and this blog has been my main gig for quite a while now.

But there is one job that easily stands out as the worst job I ever had. But in some ways it was also the best. Let me explain.

The summer of 1995 I graduated high school and had finally quit The Gap a few months earlier. Three weeks into my last summer before college and I couldn't find a job anywhere! This was pre-internet, so we're talking pounding the pavement, temp agencies and eventually the classified ads in the newspaper, and that's when I saw it: deliver newspapers for the Denver Post for $175 a week. The money wasn't great, but I was desperate. And besides, how hard could it be?

Turns out it wasn't that hard, but it was pretty sketchy. This was not little Timmy's paper route being delivered on bike around the neighborhood. Here's how it went:

The paper had to be delivered before 6am. Sometime around midnight I would show up to this warehouse where I'd pick up my stack of papers (depends on how many people are on your route) and spend an hour or so folding all of them. Yes they go from being stacked, to being folded and held with a rubber band. If it was raining, then I also had to slide them into a little plastic cover. Once all my papers were folded and loaded into my car, I would start delivering.

My route was divided up by homes and an apartment complex. Each house/apartment had a specific way they wanted their paper delivered: In the basket under the mailbox, on the front step, on the driveway. There was even one apartment on the 3rd floor that asked for their paper to be thrown all the way to their balcony. That one usually took a couple tries. This was the only strict part of the job (and the papers being delivered before 6)--the papers had to be delivered to their appointed spot or I'd hear about it.

Also, there were the Sunday papers. Sunday's were a BEAST. The papers were HUGE. Loading and folding them took forever and delivering them, even longer. Not only that, but the Sunday paper took over my entire car--nothing or no one else could fit in there when I was delivering the ol' Sunday papes.

Now in some ways this job was perfect for me. Ever the night owl, the hours were perfect. It was super easy for me to stay up every night (and fun since I was allowed to be out all hours) and work for a few hours each day. I loved coming home and falling dead asleep at 6 and then waking up around noon or 1 and still having the entire day! I could sleep until noon on a regular day, so it really felt like I was even more productive than ever. I could also bring friends with me on my route. I loved the super casual, laid back nature of the job and again, the hours were great.

However, it was not the safest job. I would NEVER EVER let one of my daughters deliver newspapers by herself in the middle of the night. Like, NEVER. I liked delivering to the houses because for the most part I could stay in the car. Yes I sometimes had to make sure the paper was on the front step or whatever, but most people were cool and just had their paper in the driveway. This particular neighborhood wasn't super sketchy, but it was a little sketch. I was always looking over my shoulder and keeping an eye out for anything out of the ordinary. But I hated delivering to the apartment buildings as I was out of my car most of the time, running around this complex in the middle of the night. One night as I was throwing a paper onto a balcony I heard a male voice out of the dark ask, "Do you want to come inside for a drink?" Remember this is 2 or 3 in the morning. I sheepishly said a quick no thanks while running back to my car. Another night as I was in the parking lot of the complex there was a car full of dudes, and another car full of dudes behind that car. Luckily I was still in my car at this time, but I got nervous so instead of delivering the paper I decided to drive around for a minute. Well these two cars started following me. Two cars FULL of dudes. I drove ALL over town and they followed. I still remember the slight panic I felt worrying that they would try to box me in. I kept driving. I didn't know where the police department was or I would have driven there, but I also didn't want to go home and have them follow me and know where I lived...so I just kept driving. They eventually stopped following me.

At that point I went home and I waited until the sun came up, around 5 and then went back and delivered to the apartments. And every night after that's what I did. I delivered my houses, came home for an hour or two and read--and then went back out and delivered to the apartments in the daylight.

There were also some unsavory characters in this line of work at the warehouse and when a guy I was friendly with flashed me his giant knife one night, I tried to keep my head down and stay to myself. And let's not forget the time I got a flat tire at 3am and changed it myself. Good times.

So tell me, did anyone else ever have a job as stupid as mine? And by stupid I mean kinda dangerous and risky? If not risky, please tell me about the worst job you ever had and how you finally got out of it. 

Friday, November 16, 2018

Special Needs Spotlight | Kim

Hi. My name is Kim and I’m 35. I was born with Spina Bifida and Hydrocephalus. I am quadriplegic with only a little use of my right hand. I use a power wheelchair to get around; voice-activated cell phone, adapted computer and automatic openers on the door to my building and my apartment. Obviously, I’m a big fan of technology! I live in an apartment with a roommate—and I have a wonderful caregiver who gets me up and going in the morning and into bed at night and prepares my meals, etc. I have had many surgeries/hospitalizations which have interrupted my life, so after each one I have to work very hard to get stronger. I work out with a personal trainer three times a week. We do weights, strength training and even boxing! 

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Miggy: Hi Kim and welcome! Let's start at the very beginning, do you know how your parents first learned about your diagnosis and how they first felt? What, if anything, do you remember about those early years and how would you describe your childhood? Looking back now, do you have a different view of how those early years have shaped you?

Kim: It was obvious to my parents when I was born that something was terribly wrong. I was blue, not breathing, and the doctors noticed a sac (the size of an orange) on my spine. A specialist told my parents that i had Myelomeningocele (a form of Spina Bifida). Myelomeningocele is a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone). I was whisked away to Children Memorial Hospital that night and had surgery to close my back. About a week later I had surgery to place a shunt to relieve pressure from fluid on my brain). My parents were very scared because their first born child was born without a disability.

My early years were rough. They mostly consisted of going to multiple different therapies, doctors appointments and surgeries. I have had 74 surgeries/hospitalizations in my life and most of them were when I was younger. I think like most young kids it was very hard for me to grasp the idea that even though the many surgeries, hospitalizations, and therapies that I went through hurt/were scary, they would actually be saving my life in the long term.

Looking back my view of how those younger years have shaped me have changed greatly. I'm now living on my own (with the help of a wonderful caregiver) with a roommate. My confidence has grown immensely. I'm able to manage my own medical care and I've become a lot more independent.
Miggy: Can you tell me what your family life was like growing up? Did you have great support from your family and siblings? Was there anything you wish they would have done differently?

Kim: My family life growing up was pretty good. We went on a lot of family vacations. My parents were always supportive. They were great "advocates" for me when I was too young to make decisions on my own. When we were younger, my sister, Lauren (who is two and a half years older than I am) weren't that close. I think that she was sad because whenever I had to have surgery and my parents wanted to stay with me, Lauren would have to go to our grandparents, who lived in another state. On the other hand, my mom recently told me the story of how when we were younger, my sister would push me in my "star car" under a tree on the side of our house. Then we would "secretly" eat Oreo cookies. In college Lauren volunteered for AIDS hospice. Because I had so much medical stuff going on, she was very compassionate with the people whom she worked wit. These days Lauren and I are best friends!

My brother, Alex (who is nine years younger than ! am) have always had a really close relationship. He is the person who I usually end up talking to a lot when something is bothering me or if i need advice . Or if I just want to "vent". I remember when we were a lot younger one of his friends asked him, "Why is your sister in a wheelchair?" Without a second thought Alex said, "Cuz she can't walk... stupid!"

Friday, November 09, 2018

Special Needs Spotlight || Crew

This Little MIggy || Special Needs Spotlight || Crew
Hi everyone. I want to start by sharing that I had read and loved Miggy’s blog years before our family became one with special needs. I distinctly remember wondering if, faced with a similar reality, I would be able to be as resilient and brave and amazing as Miggy and other moms who shared on her pages. I have to believe it’s because of them that we are navigating our “special” with any measure of the same. We are a family of four living in western Washington state. Being outside, traveling with family, finding humor in life, and impromptu dance parties are some of our favorite things. Our son, Crew, was diagnosed with type 1 diabetes last September, and this is our story! 


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Miggy: Welcome Camery and thank you so much for being part of the special needs spotlight series and sharing your family's, and especially your son, Crew's foray into type 1 diabetes. Can you take me back to the period of time from when you knew your something was off about Crew to when you got his diagnosis? What were those first red flags and how did you feel when you got his diagnosis? Can you compare those first thoughts and feelings with how you feel now?


Camery: Thanks, Miggy! We are still fairly new to type 1, just a little over a year now, so a lot of those memories and feelings are easy to recall. Summer was winding down, although we still had a couple of adventures to cross off of our summer bucket list. As we swam and hiked and played I noticed he seemed a little ‘off’. Usually the first one up for an adventure, I was now finding him on my lap, or asking to be carried, or resting on the couch. We went on our first BIG camping trip and he didn’t perk up at all. I attributed it it to the end of a busy summer and let him go at his own pace. But my concern was piqued.

He wet the bed for the first time in his life one week before his fifth birthday. And then a second time. He was always thirsty. So, incredibly thirsty.

We measured Crew on our family wall for his 5th birthday a couple of weeks later and realized he had grown nearly four inches in one year. That had to explain why he was suddenly looking so thin, right? Walking up the stairs that night he collapsed from exhaustion. His little body just couldn’t even move. I carried him up to bed and something in me knew things were about to get really real, really fast. I worried he wouldn’t make it through the night so I called a wise friend. When told her I thought Crew maybe had type 1, she paused and told me she had some family in town visiting: one, a registered nurse, the other, a type 2 diabetic with testing supplies to spare. They arrived in minutes and as her nurse sister poked the finger of my lethargic and unaware child, she told me the meter would only give a blood glucose reading of up to 500. Anything else would only show HIGH. Seconds later the screen lit up: HIGH.

Monday, November 05, 2018

Accessible Home Update || Universal Design

This Little Miggy || Accessible Home Update
We are renovating a 1961 mid century home and gutting it from top to bottom. In addition to be a dream house, it's also going to be an accessible dream house. You can follow along from the beginning here and here with bathroom inspiration here and here, and kitchen inspiration here.

I snapped the above photo of Lamp the other day while checking out the house and I thought, We did this for you kiddo. We designed this whole house for you.

Which is true, and false and a grossly unfair statement to make all at the same time.

*****

In 1988 the National Multiple Sclerosis Society flew a man (whose identity I don't know) out to New York City to receive their "Man of the Year" award. They put him up at the hotel across the street from where the gala was to take place. However, getting across the street to receive his award would prove to be a difficult task as the man drove an electric wheelchair. There were no curb cuts in the side walks back then, taxi's could not accommodate his heavy, battery-operated chair and buses didn't yet have wheelchair lifts. Eventually the MS society had to rent a van with a hydraulic lift simply to deliver this man across the street so he could receive his award.

Story paraphrased from the book No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro

*****

What does it look like to design a house for a family of five, but with one person's needs being the predominant driving force behind every decision?

Well it looks like tearing a wall down and rebuilding it 6 inches away. It looks like widening all the door ways and making sure there is a bathroom on both floors with a 5 foot turning radius to accommodate a wheelchair. It looks like a custom vanity in the bathroom and meeting after meeting after meeting on the kitchen island with contractors, designers and even the stone fabricators to make sure it is as functional as it is beautiful. It is concrete ramps and removing trees to grade the wooded lot so part of it is actually flat, a.k.a. accessible.

It is also looks like talking through with your husband over and over again about how a particular space might be used and navigated by this one family member. How is it navigated now? How will it be navigated in the future? Will she use her new chair, will she use her old chair, will this even matter? And of course it looks like talking with this family member herself. Because while she is only 8, she is also the world's foremost expert on being herself.

It looks like a heart to heart with your contractor discussing the fact that while you're sorry for second guessing everything and last minute decisions you've never done this before and you don't know if you're doing it right.

And of course it looks like a damn elevator smack dab in the middle of the house because we fancy like that.

*****

When Lamp was a baby--long before I the entirety of her needs would come into focus and long before a more developed understanding of disability and even longer still before I even thought about something as abstract to me as disability rights--I remember reading a story about a girl who was disabled, in fact I believe she had limb differences, and her parents fighting for her to be on her high schools cheerleading squad. I was the mother of a new baby girl with limb differences, but I had also been a high school cheerleader. Internally, I felt a sheepish guilt for having a daughter with special needs, but also believing these parents were off base. Cheerleading was a competitive sport at my high school with our varsity squad often taking 1st in State. Their stunts were amazing, as well as difficult and dangerous. At the very least, you needed long arms and hands to do cheerleading I thought. It's just a requirement. It's not personal. It's the nature of the sport.

In their response to critics about their daughter lacking the basic requirements of what is needed in the sport of cheerleading (ie--arms and hands) the parents said (paraphrasing), "If we go by the current standards of what a person needs to participate, then she'll never get to do anything."

Holy $&#@. 
They were right.

*****

Friday, November 02, 2018

Special Needs Spotlight || Ashlee

This Little Miggy || Special Needs Spotlight || Ashlee
Hi! My name is Teal, and I'm going to tell you about my youngest daughter Ashlee. She's a really special little girl with some really special struggles, but she's almost always got a smile on her sweet face. We live in Mayfield, KY with my husband, and her 3 siblings. I'm excited to give you all a small peek at our lives!

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Miggy: Hi Teal and welcome. First, I love your name and second, thank you for being here today to talk about your children, primarily your daughter Ashlee. Let's start at the beginning, when did you first learn that your daughter would have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Teal: Ashlee's troubles really started to become obvious right after she started kindergarten. She started having terrible, violent mood swings. It was so scary to watch my sweet little girl suddenly start screaming, hitting, kicking, and biting only to burst into tears while hugging me and apologizing because she didn't mean it. Soon after she started to stumble and seem weak, followed by loss of bladder control. That was a whole new source of fear and pain for us.

Now instead of focusing of the bad, we spend that energy making the best memories that we can for all of us.


Miggy: Your daughter has a rare diagnosis called Unspecified Neurodegenerative Disorder that results in Encephalopathy, Cerebellar Ataxia, Ocularmotor Apraxia, Dysphagia, Tremor, Insomnia, and Developmental Regression. Can you please educate us about your daughter's condition and how it affects your family's day-to-day life as well?

Teal: Her condition causes a lot of damage that you can't see by just looking her. Her brain is being damaged a little at a time. The cerebellum in particular is being affected the most right now, and it causes global low tone and an inability to control her movements properly, even the muscles that control her eye movements. The doctors have described her muscle control as being similar to Muscular Dystrophy. She gets fatigued really easily, and uses a wheelchair for long distances. She also just got her first SMOs to help with her ankle stability as she walks around the house. She can no longer take anything by mouth, and gets all her feedings and medications through her Mic-Key button [also known as a g-tube or feeding tube]. She also has several mental delays. She's 9 years old, but her understanding is that of a 3 year old and socially she is around 2.

On an added note, things haven't been going very well lately. We had to make the hard decision (along with her specialists) to remove Ashlee from school. A few weeks ago she became frustrated and overwhelmed and she attacked a much smaller boy. She's starting "home hospitalization," so her teacher and therapists will be coming out to the house a couple of times a week.

Thursday, November 01, 2018

Happy Halloween

This Little Miggy || Halloween 2018
The day before Halloween was a near perfect fall day with blue skies and a slight chill that gave way to a warm afternoon that had parents peeling off their sweaters at school pick up. "Why can't Halloween be today?" Many of us bemoaned as rain was on the forecast for Halloween. And it did rain. It was overcast, but luckily not cold. Also, while it rained it was mostly a light drizzle with only a few real downpours. Rainy but not cold, moody and overcast--it's not perfectly ideal, but also not terrible. It was a little sweet spot that felt just right for Halloween.

A while back on Instagram I talked a big about how amazing Lamp's costume was going to be. I had plans to integrate her wheelchair like we did last year--in my head it was going to be amazing. And Lamp was on board. And then she wasn't. She reasoned that if her chair was too fancy people wouldn't really be looking at her. They'd be looking at her chair. I tried to convince her a couple more times but her initial acceptance turned into a hard no. And so of course, we relented and let her lead the way and do Elsa her way. (Although the white hair wasn't quite what she imagined as she quipped, "I don't look like Elsa. I look like a grandma dressed as Elsa!") She looked beautiful.

PSP came up with her costume all herself spying the mask and wings on sale at Michael's. For the record she is a black swan. Not THE black swan, just a regular ol' random black swan OK?
This Little Miggy || Halloween 2018

Monday, October 29, 2018

Parenting Hack || Book Planting

This Little Miggy || Book Planting
This post is sponsored by Magination Press Family who is dedicated to growing healthy minds in kids and teens. As always thanks for supporting sponsors here on TLM as it allows me to keep creating content I care about. All opinions are my own.

Remember in the original finale of Gilmore Girls (spoiler alert!) where Rory is about to leave for her first real job and Lorelai is saying how she feels like she doesn't have enough time because they thought they were going to have the whole summer together and she still has all these important things to tell Rory about life and work? Lorelai's frantically running through a last minute list of do's and don'ts including keeping a stash of zip lock bags handy and offering to give her the orange sweater she knows Rory wants when Rory gently cuts in and says, "Mom, you've given me everything I need." That moment. That moment is the moment in life I can only hope to have with my girls someday. That moment when I send them out into the world knowing I have given them everything they need to conquer the world. (Hopefully they will be a little more triumphant than Rory because if they're couch surfing and hooking up with high school boyfriends in their 30's I shall question every decision I ever made.)

I find myself making frequent mental notes about important things I need to teach my children, many of these concerning some of the more "delicate" conversations of life--periods, bras, friends, kissing, consent, peer pressure, crushes, popularity and on and on. However, I spend even more time wondering how I'm going to bring up these topics in a "natural" setting where it doesn't feel like an awkward 80's tampon commercial.

Of course this extends beyond "delicate" conversations as well--disability, kindness, technology, disconnecting from said technology, health, happiness--you know, just all the things. I want to be able to talk to my kids about all the things and yet sometimes kids do not want to talk about all the things. It's like they can immediately sense any topic that might slightly overlap with the word puberty on a ven diagram and they shut down quicker than a whorehouse during the Rapture. (Sorry but I couldn't think of anything else.)

One really great solution I've found to conversations starters are books, more specifically planting books. Yes planting them like a crooked cop. Except you're not a crooked cop, you're a mom who cares about her kids health and well being. Sometimes I plant said book right in my kids hands, "Here I got this for you. Thought you might like to read it." Other times I just casually leave it by their bed and see if they've had a chance to look through it.