Monday, April 9, 2018

Goin' A Travelin' -

During breakfast this morning Scott and I were talking about where we've traveled in our 14 years together. We've been to:
Southern Utah many many times
Idaho many times
Montana and Wyoming a few times
Alaska a few times
The Northwest
Northern California
Southern California
Washington DC, Virginia, Maryland, Pennsylvania
Tennessee, Georgia, North Carolina
Mississippi, Alabama
Hawaii
Holland
Switzerland

It's my 5 year cancerversary on April 18!!!!! I am so looking forward to this day. And as a way to celebrate, Scott and I have our bags packed; we're off on a Folklady and Husband Adventure -








Sunday, April 8, 2018

Happy Birthday, Lydia - CDKL5 -

My niece, Lydia, was born 19 years ago. She's the youngest of 6 children. She's a tall, slender, red-headed wonder.

Lydia loves to hold hands and kiss heads.
Lydia loves to cuddle with her brothers-in-law and brother.
Lydia loves babies.
Lydia loves counting and her ABC's, especially if someone will count or do the alphabet with her.
Lydia loves music - her iPod and speaker are with her constantly.
Lydia loves animals, swinging on a swing, and water.
Lydia is a joy, a nuisance, a handful, fun, funny, and typically very happy.

Lydia is a perennial 2 year old.
Lydia doesn't sleep.
Lydia isn't potty-trained.
Lydia can't dress herself.
Lydia socializes on her terms.
Lydia is stubborn.
Lydia pulls hair and pinches.
Lydia's diet typically consists of dry cheerios, goldfish crackers, and marshmallows.
Lydia has a feeding tube (G-tube) which her mother or father accesses 2-3 times a day, to feed her.

Lydia started having seizures when she was 4 weeks old. She has CDKL5.

Most children with CDKL5 do not walk, are in wheel chairs, can't talk, can't feed themselves, and are totally dependent on others. They typically have sensory issues, scoliosis, stomach/digestion issues. This disorder mainly affects girls. There is no known cause for the genetic mutation, and there is no known cure.

CDKL5 is considered an orphan disorder - there isn't a lot of testing, medical knowledge, research, resources for this disorder. Her parents finally found this diagnosis a couple of years ago, after years and years of doctor's appointments, research, sticking up for themselves, and being Lydia's advocate.

They have raised her, as their toddler, for 19 years. Lydia's parents have created a home that is comfortable for Lydia, including a special room, a unique bed, wide halls (if she ever needs to be in a wheel chair), just for Lydia.

Lydia's parents have created a full life for Lydia. Dressing stylish with nicely fixed hair, Lydia is never dirty or sloppy or stinky. Lydia's days are rich with experiences. She goes to school, has quiet time, has friends, goes to a Young Women's group, has a Sunday School class to herself, is involved in 90% of the family's activities, and has sensory experiences from petting dogs and riding horses to field trips with her school. Lydia has a part-time care-giver who caters to Lydia and loves Lydia. Lydia truly blesses the lives of everyone who has the opportunity to know her.

Lydia's parents are as amazing as Lydia is. They are totally devoted to Lyds. Their love is unconditional. Neither of Lydia's parents has slept through a night in 19 years, because Lydia hasn't slept through the night, ever (sometimes she doesn't sleep at all). Lydia is their life, yet they've managed to have quality and quantity time with each other and their other 5 children. Lydia's parents worry about Lydia aging as they age. They have as many unanswered questions now as they did when Lydia first started with her seizures. But as with their constant advocating and caring, they will find answers, because that is who they are.

Lydia - what a girl. Lawrence and Maria - amazing parents. Taylor, Sabrina, Danielle, Calais, Clara - fantastic siblings. Lydia has been blessed with this family. And Lyds' family and extended family have been blessed with her.

Happy Birthday to you, Lydia. I love you.

Lydia - top left, with siblings and cousins. Summer 2006. 


Lydia, stubbornly sitting, delaying family pictures. Fall 2017. 


Lydia, 2017.



Thursday, April 5, 2018

Books Reviewed - Practicing Mindfulness -

The last big writing assignment my 2010 writing students have is to write a Rhetorical Think Piece using three resources from the sources they used for their research paper.

It is always my goal to have written what I assign, and yet I haven't written to this particular assignment. So, I write. And I chose to use three sources that I am reading right now as I learn more about a topic I love: Mindfulness.

Below is my review of three books regarding Mindfulness - for my students and for my blog readers. Enjoy.



Ronda Walker Weaver
April 4, 2018
English 2010
Rhetorical Think Piece – Mindfulness; Benefits and Practices
          I have been studying Mindfulness for the past six years. I injured my back six years ago. I could not get into a doctor for three months, so I had to find some way of staying in the moment and keeping my pain at bay. Then, five and a half years ago I found a tumor in my left breast. It was cancerous. I went through eight months of surgery, chemotherapy, and radiation. During this time my mind and body were restless and in pain. I needed the practices Mindfulness offers to control my pain and to keep myself in the moment rather than worrying about tomorrow.
          There are three publications that helped me as I wrote my research paper, “Practicing Mindfulness.” These pieces are Breathe: The Well-Being Special; Mindfulness: An Eight Week Plan for Finding Peace in a Frantic World, and 101 Mindful Ways to Build Resilience: Cultivate Calm, Clarity, Optimism and Happiness Each Day.
Jonathan Grogan, editor. Breathe: The Well-Being Special. Times Inc. Books, 2017.
Summary
                Breathe: The Well-Being Special, is printed in magazine form, with numerous topics regarding practicing Mindfulness. There are several articles, or chapters in this publication, with numerous authors and specialists in the area of Mindfulness contributing their wisdom. The book is broken down into four areas: Mindfulness, Wellness, Kindness, and Inspiration.
                With these four chapters, the publisher takes the reader from the actual practices of Mindfulness to the benefits of Mindfulness.
                I appreciated the essay, “Let Go,” where the author writes about identifying feelings that are of no benefit and giving the reader the permission and tools to let go of these emotions (16).
                A second article, “Yoga: find your balance,” is a good beginner’s guide to Yoga. This article discusses how to find the right type of yoga for anyone interested in practicing.
                Interestingly, kindness, plays a powerful role in practicing Mindfulness, as the article on “Letter Writing” explains.
                Lastly, in the “Inspiration” section, topics include taking a bath, benefits of essential oils, a good night’s sleep, and having hope.
Point of View
                This book is very upbeat and very simple. The articles are clearly presented and written for a general audience. There are “cutesy” drawings, pictures, fonts, and sidebars, which made me believe, along with the article topics, that this was written for a female audience.
Counter-Argument
                My counter-argument would be that the articles are very short quick reads, with nothing too deep or intense. There were topics where I wished there would have been more information, or at least some resources made available. This book appears to be a “one-stop shopping” publication, where this probably should be a primer with resources if the reader wants to go deeper into any of the topics presented.
Tone
                The book is cleanly and clearly presented. All of the articles are positive and very life-affirming. This book, like a magazine, does not need to be read in any order, as the articles do not build on each other. It does have a Nordic feel to it – from the drawing on the cover to the feel of the paper to the simple drawings inside. There is a Scandinavian term that is quite popular these days, “hygge,” and this publication lends itself to the idea of cozy, simple, and encouraging.
Value
                The value is the set-up of the book as well as the readability. It offers a great overview of what breathing and well-being really are.
Mark Williams, and Danny Penman. Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World. Rodale Books, 2012.
Summary
This book is a basic guide to understanding Mindfulness, and it offers simple forms of Mindfulness that anyone can practice.
Point of View
                Mindfulness Guru, John Kabat-Zinn wrote a foreword for this book. And, if he endorses its publication, it must be of value. This writing is not just “fluff,” but a “how to” manual for application of the material that is taught. This book is a challenge – not only reading the material as well as choosing to take on, and commit to, the eight-week plan that is created in the book.
Counter-Argument
                While practical and even wise, this book’s “change your life in eight weeks” premise can be daunting. I am even a little concerned about committing to this challenge; what if I cannot do the eight weeks? Will I be a failure? I think shortening the challenge would make the entire book a little friendlier.
Tone
                Jon Kabat-Zinn sets the tone for the entire book. He offers, “This is an inspiring program for anyone caring about his or her own health and sanity.” With that aspiration, the reader sees not only a challenge, but a confirmation that the work entailed will be worthwhile.
Value
                If the reader is a skeptic, this book probably is not of much value; but then, why would someone be reading this if they were not interested in Mindfulness? The value in this book is not only the explanation of the forms of Mindfulness, but also the ways to put this into practice – whether it be formal meditation or informal focus.
Donald Altman. 101 Mindful Ways to Build Resilience: Cultivate Calm, Clarity, Optimism and Happiness Each Day. PESI Publishing, 2016.
Summary
Altman’s guide to Mindfulness is a “how to” manual for bouncing back from stressful moments using simple sixty second exercises, that are mostly applicable in any situation, any place. It is divided into four sections: Calm, Clarity, Optimism, and Happiness.
Point of View
                This book is presented as a toolbox of sorts with the table of contents showing exactly what tool is needed in any stressful or anxiety producing situation the reader is in. It is accessible, simple, and very reader friendly.
Counter-Argument
                The author makes the presumption that all of the readers will have been in situations where stress can happen and then downtime can quickly proceed. He also presumes that his readers are resilient and able to bounce back from challenges.
Tone
                The tone is chatty while also teaching. Altman gives step-by-step instructions for each mindful moment. For example, under “Daily Intention Setting,” he teaches the reader should make a conscious effort to set positive intentions for the day, every morning, “It helps you show up in a way that makes even your smaller actions count. A guiding intention invites a sense of order and calm into your day – and life.” He then proceeds to give four “How-to” points for putting this into action. This clearly defined and leaves the reader with no excuse for not being able to act on these intentions (11).
Value
                Easy, simple, quick, without taking more than a minute, these applications are doable to even a novice at practicing Mindfulness. This practical guide does what it promises, if the reader gives the actions just a try.
Conclusion
My ability to practice Mindfulness supported my experiences with my back, my cancer treatment, and my desire to find a place in my mind and my day to calm down. Even today, when life gets stressful, my anxiety gets high, and I cannot sleep at nights, I have the resources and knowledge to practice Mindfulness, whether that be a fifteen-minute meditation, some deep stretching or yoga for a bit (even at work), or taking the time to close my eyes, picture a sunny day at the lake, and “ommm” for a few minutes as the plane takes off, or lands, on my way to England this next week.

Monday, April 2, 2018

Sleep -

How important is a good night's sleep to you?

I swear my mother must have played soft instrumental music and kept the house still when I was a baby. I cannot sleep if there is any noise but white noise in the house.

She also must have made my bedroom as dark as possible. I cannot sleep in a room with light.

In other words, I am a light sleeper. If there are any noises - audible or not, I cannot sleep. And, my mind does not go to sleep either.

So, waking up, to go to the bathroom in the middle of the night is awful. I have to pee, and yet I know if I get up, I won't be able to go back to sleep.

My sleep has been horrible'er since cancer. My mind turns on so quickly, and it's impossible to go back to sleep without some form of medication - not meditation, but drugs - whether Aleve, a sleeping pill, or last night, a Nyquil. And I'm the one who teaches mindfulness and sleep habits at my job - and yet they sure as crap don't work for me!

I am such a better person with 8 hours of sleep, and when I don't get that I am terribly unproductive the next day. I wander like a zombie - half in this life, half out.

And - then I married a man who happens to snore, and snore very loudly. Particularly if he has had sugar or milk products within a couple of hours going to bed. I nudge him, then kick him, then push him out of bed (or I leave). One of us ends up sleeping in the other room for the rest of the night, which then is disruptive sleep for both of us.

A friend suggested I try "Calm" prior to going to bed. That's not my problem. I need a "Calm" in the middle of the night; something to calm my mind; something to tell my mind that it's okay to stay asleep.

Darn - I need some Zzzzzzz's.


Wednesday, March 28, 2018

Prayer - Public or Private -

I was asked to pray today at a Habitat for Humanity event. I don't like praying in public! And I said yes.

Prayer is extremely personal and intimate. I pray with Scott; I pray a blessing on the food we eat (when at home), I "amen" other's prayers, and I spend much of my days carrying a prayer in my heart, but to pray where I will be heard is almost an invasion of my space - putting myself "out there" to others - the words of my heart are now the words of the people. So - do I share the words of my heart and be true and vulnerable, or do I say what I think the "other" wants to hear, and keep my prayers in my heart?

Is the prayer for God, for myself, or for the people who have gathered for the event? And since I don't like drawing attention to myself, could my prayer be strong enough, subtle enough, powerful enough, gentle enough to be the focus? (I mean - I even worried about what to wear, just to make sure the attention wasn't on me, and then I worried what to pray, so the attention wasn't on me!)

Quite the conundrum.

So, I wrote my prayer down, memorized it, and I prayed -

Our gracious God, We are grateful for the opportunity to meet together to support Habitat for Humanity. We are thankful for what they do in our communities and for the opportunities they give us to serve.
As we begin our time together, we pray for a blessing on this food and a blessing on the hands of those who prepared it, from garden to table.
Please be with our presenters and with us, that our minds and hearts might be open to their messages, and that we can use these messages to better ourselves and those we serve.
For these things we pray - Amen.

And then I stepped down off the stage, walked back to my seat, and ate my breakfast. Scott said I did well, but I still felt awkward, almost exposed.





Sunday, March 25, 2018

Inspirational Quotes - or Not -

I love a good quote. Nothing motivates more or speaks to me more than language. A beautiful phrase or piece of knowledge inspires me. Mostly. There are so many thoughts going around and some, honestly, just hit me as blabber rather than inspiration. I saw this "Analysis" the other day, and since I am teaching Critical Writing this semester - teaching my students how to look at writings and see beyond the words to see the meaning, and then to think for themselves to determine whether or not the writings ring true - and this caught my eye and I laughed out loud. After all, don't we want everything we read to just be true rather than having to look for "something more"? After all, if it's in print, particularly if it is in a meme or on Pinterest or Instagram, it has to be true! Well, here's my laugh - 

https://www.instagram.com/bymariandrew/


Tuesday, March 20, 2018

Hashimoto's Disease and Cody Jean -

I believe in this woman, whole-heartedly. I've written about Cody more than once in this blog, and she continues to amaze me. We've spent many hours together over the past several years, and I value not only her true-blue friendship, but her dedication to wellness.

Her blog these past few times has been about Hashimoto's Disease, something she has suffered with for many years, and yet she has not let this stop her from being the best she can be.

I know several people who do not let their illnesses, diseases, frailties, or inhibitions stop them from giving life their best. And I know many folks would just as soon stay home in bed and complain.

But that's not the life Cody wants to live. Not the life I want to live. What about you?

Last day of radiation. I was soooo sick and so determined to exercise. And Cody was with me every step of the way.