Friday, October 12, 2018

Spotlight Revisited || Rebekah

thoughts on accessibility || This Little Miggy Stayed Home
Hello! Miggy here. As you guys know sometimes when I don't have a new spotlight I like to reach back into the archives and feature a spotlight from years past. Today's spotlight revisited is a standout favorite. I absolutely adore Rebekah and all that she has taught me over the past couple of years. Not to mention, she's just an all-around bad ass woman. If you read and share only one spotlight, please make it this one. Have a great Friday. XO.

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Hello, lovely people! My name is Rebekah. I am a writer and teacher who lives in a very small, very old house with two chunky orange cats in Kansas City. I’ve been paralyzed for as long as I can remember but did not begin to really unpack what this unique embodiment meant to me until I was in my mid-twenties and began working with disability studies in my PhD program. As I studied for the first time things like the social construction of disability, I began to process a lifetime of memories and feelings connected to my body. While I spend a lot of time writing long-form pieces about my connection to disability, I recently started an Instagram account, @sitting_pretty; I use this account as a medium to 1) reflect on what it means to live as a disabled woman, 2) connect with others who are also processing what it means to live from a particular body, and 3) share more beautiful, nuanced photos of a body that looks and moves differently than most.

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Miggy: Hi Rebekah! I'm SO glad to be featuring you today on my special needs spotlight series. I know you from your lovely Instagram account @sitting_pretty and I can't remember if you found me or if I found you but I'm so glad we found each other! In addition to being beautiful, smart, poised (and a little sassy) you are also a paraplegic and a wheelchair user. A lot of your IG posts about accessibility have really struck a chord with me. But lets start at the beginning...you were born a typical and healthy child, but were diagnosed with cancer when you were 14 months old. The tumor wrapped around your spinal cord and by age three you were paralyzed. You also spent a significant amount of time in your early years in and out of the hospital treating your cancer. What do you remember about those early years? Do you remember what it was like to walk? Overall how would you categorize your childhood (or do you)? Looking back now, do you have a different view of how those early years have shaped you?
Rebekah: I actually don’t remember very much from those early years going through the chemo, radiation, and operations. In some ways, those years feel more like my parents’ story than mine. They have very sharp memories of what it was like to watch their youngest baby fight deadly cancer for years, and I have to struggle to imagine how I might have experienced the stories I’ve only heard about myself. I’ve watched the fuzzy, 1980s home-movies taken of me in the hospital with my bald head and baggy, yellow hospital gowns so many times, I wonder what I remember and what my imagination has fabricated into a makeshift memory. I do have a few very vivid clips and snippets from that time that I hold onto tightly: my dad singing songs to me while he pushes me across the street toward the hospital in my ratty blue stroller; using a permanent blue marker to draw scars to match mine on my baby doll while my mom napped; a doctor sticking my paralyzed legs with pins, shouting “Do you feel this?” I don’t remember the months upon months of nausea and vomiting from the chemo, I don’t really recall the needles or the surgeries, I don’t have a single memory of walking, and I can’t imagine what having full sensation in all of my body might feel like. In some ways this feels like a giant gift, and in other ways, it makes me feel largely disconnected from myself. Those years were incomprehensibly formative for who I am now, and I can’t recall them. (But maybe that’s the same for all of us in one way or another.)
It’s difficult for me to trace how these years shaped me. From my earliest moments, I was (understandably) encouraged to be brave and strong and happy in the midst of my pain, and I absorbed this so thoroughly into my body and mind that it took me until my early twenties to understand its larger implications. On the one hand, I think it made me pretty fierce. I am capable of barreling through almost any challenge I decide to tackle, and I like that about myself. On the other hand, I did not develop the skills to recognize my emotions. It’s like those early years of smiling in the midst of pain slowly burned off all the sensors in my body that could tell me when I was unhappy or uncomfortable or discontent or frustrated or sad, and without these sensors to guide me through life, I was pretty lost. In my early twenties I had a pretty significant break-down that motivated me to go to a wonderful therapist who has worked with me the last five or so years on learning to process my emotions, trust my own perspective, and use my feelings as a guide to take care of myself. So, the early trauma had a powerful effect; parts of me were bolstered into steely strength while other parts of me atrophied. This give-and-take seems rather inevitable for something as potent and destructive as childhood cancer.

Miggy: You are the youngest of 6 kids. Can you tell me what your family life was like growing up? I'm sure cancer, chemo, paralysis, and wheelchairs threw your family for a loop! How did your parents handle these unexpected changes? Did you have great support from your family and siblings? Was there anything you wish they would have done differently?
Rebekah: I have two sisters and three brothers, and growing up they were the safest and happiest place in my world. I’ve heard that during my treatments my siblings were often the only thing that could make me smile; they still seem to have a superpower ability to make me laugh more than anyone else. I know in my head that my paralysis must have brought significant changes to the family system, but that’s not how my memory recorded it. From my tiny perspective, my paralysis became a regular fact of life very quickly, about as consequential as my brother’s retainer or my sister’s pierced ears. More than paralysis, I remember Swedish pancakes in bed for our birthdays, delivering May baskets on May Day, marshmallows arranged in a smiley-face in my chocolate Malt-O-meal, secretly listening to Weird Al tapes while my parents were on a date, memorizing all the lyrics to Sound of Music and belting them at the top of our lungs, having underwater tea parties with my sister at the pool, making “magic potions” with all the soaps and powders in the bathroom, falling asleep to my Dad singing us hymns. There were no accommodations made to our house, and I did not start using a wheelchair until I started first grade (about four years after I lost the ability to walk). I slept on the top floor on the top bunk in a bedroom with three of my siblings, pushed a little red tricycle around the neighborhood, and used my walker to make up dances (that I liked to perform for my dad when he got home from work). I found creative ways to use my body to do the things and go the places I wanted. During those first years of paralysis, I lived in this content bubble with my family; they saw me like I saw me – capable and beautiful. In essence, they hardly acknowledged that anything had changed at all, and this was both wonderful and damaging.
While my family saw me as the same little person they had always loved, the world saw me differently, and eventually, I started to realize this. People, especially other kids, stared at me –long stares that followed me down the hall. Kids at school were obsessed with pushing me and my wheelchair around the playground, which made me feel both special and not. I began to notice that I moved differently than other people, and I started to clamber less and stay seated in my wheelchair more. This only got worse as I moved into middle-school – the most horrible age for all the human people of the Earth, wheelchairs included or not. I cringed through one dance with one boy at one party and felt so uncomfortable I wouldn’t be able to dance happily and easily in public until I was twenty-five. By the time I hit my teenage years, I felt unattractive, undesirable, and overall unworthy. But, as I mentioned before, I had no skills for understanding the grief I was experiencing, where it came from, or which feelings were valid and which weren’t. I continued to play my chipper part, but my internal world was crumbling. So, not acknowledging my difference at home made me feel accepted but left me unequipped for processing the fact that there were ways in which I was, in fact, quite different. I felt both infinitely loved and hopelessly alone, supported and abandoned. While I don’t blame a single person for this – I have no confidence that I could have handled it any differently had I been in their positions – I do wish I had had an advocate to walk through some of that with me at the time.  

thoughts on accessibility || This Little Miggy Stayed Home

Miggy: As I said above one of the things that I really resonate with in your IG posts have been the difficulties surrounding accessibility as a wheelchair user. Having a daughter with a power chair we have quickly learned that the world is not accessible! As a disabled adult, living on your own (getting your PhD no less) what is your day-to-day like? Is accessibility a struggle in your daily life? In short, what do you want able-bodied people like myself to understand about the importance of accessibility?
Rebekah: I’m glad my posts on accessibility resonate with you, because I actually struggle quite a bit to articulate my thoughts on this. On the one hand, I want people to understand that I am a capable, strong, independent person who can load my wheelchair in and out of my car and bump down a curb and help carry the Christmas tree home, no problem. On the other hand, I want it to be recognized that the world is not made to accommodate a lot of bodies (mine included). This lack of accommodation is a drag; it often drains me and requires I rely on another person to help me do what I want to do. So I don’t need help, and I also need help; I am independent, and also sometimes dependent; I have found a way to access, and the world is largely inaccessible. All of these things are true at the same time, and it can be a challenge to represent all of it clearly.

Wednesday, October 10, 2018

The Full Pixie + Fall Playlist

This Little Miggy || The Full Pixie
Two weeks ago I cut my hair into a pixie.

Except it was still quite long on top. Some people questioned if it was actually a pixie. And, while it was definitely super short for me, the shortest my hair had ever been, it wasn't quite what I wanted my hair to look like.

So I called my hair boyfriend and asked if he could take a little more off. A week later he did. And I was like, OK, that's better.... now it's a pixie.

And it was definitely a pixie. But it was still didn't sit quite right. Too puffy on the top and the sides. I couldn't quite figure out how to style it and while I felt better about it at first, after another week I did not feel great about it. Eh, I thought. Maybe I'm just not a pixie girl and now I know. I had done the brave thing with my hair and now I knew.

But I wasn't being brave. I was trying to have a pixie cut, while still holding on to some length. What? Short hair is not having length. I know that. But I didn't want to go too short. Just keep a little length just in case.

In case of what?

In case I don't like it and want to grow it right back out.

OK, but it seems like you don't like it because you're not getting it cut short enough.

OK, whatever subconscious brain. I think I know what I'm talking abo... wait a second! I realized that I was trying to have long hair and short hair at the same time and it was not working.

Monday, October 08, 2018

3 Things You Can Do With Your Anger

I'm angry. And also kinda sad.

I'm angry at the Brett Kavanaugh hearings. I'm angry at the President for mocking Dr. Ford. I'm angry that people either don't believe her OR if they do believe her, they think it was too long ago to matter. (WHAT?) While I do believe Dr. Christina Blasey-Ford, I don't think you have to believe that she was assaulted to agree that Kavanaugh does not belong on the supreme court. Many other fellow Yale law students have come forward and said Kavanaugh lied under oath about his drinking. (here and here--this one's a Republican!) Psssst, lying under oath is called perjury. The FBI probe ignored testimonies from former classmates of Kavanaugh's at Yale, including one who said he can corroborate Ramierz's claim about her sexual assault at a party.

Of course this doesn't even get into his unhinged, blatent partisan attacks at the hearing. So much so that retired Supreme Court Justice John Paul Stevens changed his mind about Kavanaugh and believes he should not be confirmed.

An unprecedented 2,400+ law professors signed a letter saying that Brett Kavanaugh should not be confirmed.

Again, I'm not a Democrat or a Republican. I have always been an Independent. I say this so that you understand there is no party loyalty here, never has been. I have voted for both Republican and Democrat Presidents in the past. It sickens me that something like this gets turned into a partisan issue. It was not a court of law, it was a job interview and in the eyes of most Americans Kavanaugh failed miserably. But of course, he was still confirmed

I am not here to debate you about Brett Kavanaugh today. I watched the hearings, I've read many, many, many, many articles and my conclusion is that he should have not been confirmed. The only reason I link to everything above is to cite my sources.

But I am still angry. Seems like a lot of women are. Here's what we can do about it:

First, REGISTER TO VOTE. It takes less than 2 minutes. You can also double check to make sure you are in fact registered. (Yep!) 

Second, if you need to research the candidates and the issues on the ballot in your area. (I do! I still feel behind when it comes to politics and understanding all of the terminology.) Click on this map to see what the key issues and candidates are in your area. 

Lastly, send a postcard of support to Christina Blasey Ford. I'm planning on doing this. 

Anything I missed? What are you doing to channel your anger? Also, does it make you uncomfortable when I talk about politics? Maybe give this a read. And this

Friday, October 05, 2018

Special Needs Spotlight || Hannah

Hello! I’m Christine, from Milford, Ohio (East of Cincinnati). Our cozy home includes my husband, Tim, daughter Nora (age 6), Hannah (age 4, who has Down syndrome), and a 60lb mutt named Ailo. Both Tim and I are full time graphic designers and love attending concerts when we aren't trying to keep up with two incredibly active girls!
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Miggy: Welcome Christine! Thank you for being here today and sharing your wonderful family with us, especially your sweet Hannah. Can you take me back to the day you found out Hannah would have Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Christine: I was pregnant with Hannah in early 2013. We had our gender ultrasound the day after Mother’s Day and the technicians said they were having trouble viewing parts of Hannah’s heart and gut. We were on edge as we were referred to a local hospital’s perinatal center for a Level 2 ultrasound for a closer look. At that Level 2 ultrasound, we learned Hannah had a heart defect, blocked small intestine, and several other markers for a genetic disorder. A later blood test screen (NIPT) pointed towards a Down syndrome diagnosis.

We felt like we’d been gut-punched and the rug was pulled from under us. We truly thought our lives were set for the worst; we'd go broke, one of us would have to quit our jobs, and we wondered how it would affect our older daughter. What had we done to deserve this? I dove head-first into research and finding other families such as Heather Avis, Kelle Hampton, and Michelle of Littlest Warrior (Hannah and Eli have very similar stories!) How did families find their tribe before social media?!

Of course, none of those terrible things happened and now I think, “Down syndrome? Shoot, it’s not that big of a deal!” I know I needed to process and grieve who I thought Hannah should be, but now she’s exactly who she was meant to be which is an amazing, jubilant 4-year-old. I truly forget she even has Down syndrome most days. And our girls love each other and bicker just like two sisters would : )

Tuesday, October 02, 2018

Sticks + Bones || Halloween Skeleton Wreath

This Little Miggy || Sticks + Bones Halloween Wreath
I am NOT a wreath person. Sure, I have been known to hang some simple boxwood wreaths at Christmastime because I'm not an animal, but most wreaths are not my jam. Not a judgment on all you wreath lovers, just a personal preference.

But I do love me a good Halloween decoration and when the image for this particular wreath came into my mind and I really wanted to give it a stab. (It's October let me have my fun.) In particular, I wanted there to be skeleton hands tying the ribbon at the top, suggestion that the wreath may have somehow made itself? Ooooooh, spooky. Apparently finding fake skeleton hands that will bend into place is a lot to ask, but I found them and it turned out just like I hoped it would. And listen, it's not the least expensive craft to make, but it's a large wreath that will store well and be a fun decoration for years to come, so in the end I decided it was worth it.

Here's how I did it:
This Little Miggy || Sticks + Bones Halloween Wreath
Supplies:
24" dried grapevine wreath base
black spray paint flat
two bags of large plastic bones
one set of movable skeleton hands (pricey) 
black floral wire
ribbon (I used a burnt orange velvet)
sticks from the yard (these are free!)
glue gun and glue sticks

Friday, September 28, 2018

Special Needs Spotlight || B




Hi, my name is Kat. My hospital chaplain husband Nate and I have two little boys, ages 7 and 4. Our oldeest, Brendan has Duchenne Muscular Dystrophy and Owen, our youngest does not. I've taught yoga for the last thirteen years. Our family enjoys devouring books, being in and with Nuture, camping, adventures, and hanging out with our welsh terrier Wendell Berry.

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Miggy: Hi Kat and welcome. Thank you for sharing your story with us today. Let's start at the beginning, can you take me back to the day you found out your son would have special needs? What were the red flags and warning signs that something was not quite right? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Kat: B's diagnosis with DMD, or duchenne muscular dystrophy, is rather recent. We found out last year that he would have special needs, but I think in a way, I always knew. It was the subtlest things, the way he breathed when he was a baby, a few reoccurring dreams, and a dull sense of fear. He began walking happily at 17 months, which was just under the radar to be concerned. He was challenged by stairs and moved differently than other kids his age--really, though, it was subtle. He took a hard fall at preschool on the stairs and at home, he was slow on the stairs. During this time, I had a baby in arms so I remember feeling frustrated that he "wouldn't" switch feet or get in the car when I said it was time to go or move more quickly. He started working with a PT at school. She mentioned how great it was to work with B as she had worked with two older boys with DMD--she casually mentioned this, but in hindsight, I think she was planting a seed.

Then one night, I was prepping for a yoga retreat that I was to be leading on the weekend and I had a terrible sinking feeling. I googled a bit and found a video of a boy with DMD and my heart just sank. I came upstairs and starting bawling to my husband "wonder if it's this?" It was a feeling I had felt before, when my mom died, when I knew a break up was about to happen or I when I was about to get some bad news ... the way the water parts in the front of a boat, the wake before. He thought it was just pre-teaching crazy nerves, but agreed to talk to the PT on Monday. That weekend was the worst. I was teaching at a yoga retreat that I had planned for two years. The location was gorgeous in the woods, the women there were wonderful and I had downtime in solitude between the sessions. My mind just went to B and the possibly of DMD. My husband and I talked that night and he said that he cried to his parents on the phone so I knew it wasn't just all in my head.

So we talked to the PT, saw the Dr., got the blood test, and on Friday May 5, 2017 learned our son's CK levels were elevated in congruence with MD. We saw the neurologist at Children's Hospital Milwaukee the next Tuesday and with in a few minutes he was clear that B had duchenne muscular dystrophy. We had already done all the google searching to find out what that meant. The feelings were many and strong. Shock, devastation, anger, a terrible feeling of nightmare, like the way I felt waking up from those dreams I had when he was a baby. A feeling like my heart was ripped out through my stomach. A feeling of deep pain, the worst kind. Today, the feelings of shock and trauma have dissipated, but it takes a lot to allow other strong feelings like anger and grief and just a sense of grasping, desperation to exist alongside the deep gratitude and joy I feel to be his mama, and to know and love him.


Miggy: Could you please educate us about duchenne muscular dystrophy and explain how your son’s needs affect his and your day-to-day life?

Kat: DMD is a progressive muscular degenerative disease. It's genetic and fatal. His body is missing the tiniest part of an exon in the dystrophin gene, in his case, he has a micro deletion at exon 18. The dystrophin gene is the largest gene in the human body and is responsible for muscle growth and repair. Without dystrophin, muscles can't repair fully and slowly lose strength and functionality. The damaged cells result in fibrosis. At this stage, he doesn't have a lot of needs. We carefully watch for signs of fatigue. His school is big, so he uses a wheelchair "Blackie" to travel to and from his special classes like to the library or art and music rooms and the lunch room. He always has an aid with him to help keep him safe on the playground. We limit any lifting as much as we can and he has some difficulty getting up off the ground and sometimes he falls. This happened more before we got him started on steroids. Though his physical needs aren't significant (there are some moments that I forget he has this at all), what affects me the most is a sense of urgency and some pressure--or rather strong motivation, to live fully, joyfully, and abundantly. Life expectancy is right there in the back of my mind all the time.

Tuesday, September 25, 2018

Parenting Update || Do You Yell? part 2

This Little Miggy || Parenting Update
Over a year ago, I went onto my Instagram stories to bemoan some parenting stress. In short, I talked about the fact that I was yelling at my kids, not daily, but frequently, and it was a problem. As I opened up on Instagram and asked for books or other solutions I got a huge response. Many people were sending books and advice, but so many others were sharing their own shame in this problem and asking me to  do a round up of the books, articles and advice and to please share! So I did. That post is here.

It's been over a year--I really didn't think it had been that long--and I thought I'd do a little update on what I've read, methods that work and one other major factor that has been beneficial to me in an effort to reduce my yelling as a mother.

I read some books.
Technically I read 1.5 books on parenting, but they were both very helpful. First, I listed to the book Peaceful Parent, Happy Kid and found it extremely helpful. I started to listen to The Whole Brain Child, but since it was through my library I didn't have the chance to finish before I had to return the audio copy. But, both books espoused very similar methods which were all about empathetic parenting. Empathetic parenting has to do with responding with empathy to your children and not trying to control them with punishments or rewards. As a parenting philosophy this resonates with me. I want a great relationship with my child more than I want a child who obeys my every command. Another suggestion that seems to have helped, especially for my youngest, is trying to make them laugh instead. Sometimes their emotions are all pent up and laughter can be as much of a release as anything else, including anger. Obviously you'll need to read the books to learn more and implement these strategies and I'm actually wanting to go back and read them again for a refresher, but I highly recommend both of these books.

I also recently read a fantastic book about parenting teenage girls called Untangled, recommended to me by one of my best friends who works with teen girls. I don't have a teenager yet, but the book does help with your pre-teen age girls as well--middle school is a common topic. This is another book I want to read again and again, but even the first read helped me feel a little more relaxed about certain pre-teen/teen behaviors when understood in the bigger context of our girls transitioning out of childhood. Again, another recommendation from me.

Sensory Awareness
One of my biggest triggers for when I yell at my kids, is when they are yelling. Go figure. Like any siblings they bicker and argue amongst themselves sometimes and I think it's important to let them work their difference out by themselves when necessary. However, sometimes I jump in just because I can't take the bickering anymore. But it's not just yelling, it's the singing, the playing and yes even laughing because while I love hearing my kids laugh and have fun, sometimes constant noise is just too much to handle. By far, the easiest and most effective measure I take against auditory sensory overload is to wear headphones and listen to either music, a podcast or a book and drown the noise out. So simple, but works so well. This works especially well when I'm making dinner.

Medication and Therapy
This, by far, has brought about the biggest change and it's really what this post is mostly about. One day last year--I honestly don't remember if it was before or after the post I wrote about yelling--but I was sitting there feeling angry and dazed from another outburst on my part and in my head I silently said to myself, "Amy, you are not well." It was one of the kindest things I have ever said to myself.