Monthly Archives: February 2015

We Interrupt This Program to Bring You This Fearful Interlude

Well, dag diggity dog. Thrice I started a post and thrice I have now lost it.

While writing the lost post for the third time, a question burrowed its way into my brain.

Is my blog just self-indulgence?

I looked around. Who’s asking that question and why?

Self indulgence :excessive or unrestrained gratification of one’s own appetites, desires, or whims

Perhaps this is the resistance of which Steven Pressfield speaks in “The War of Art.” Perhaps this is an old thought pattern which arises when “someone” thinks I’m trying to be a tall poppy.

Thing is, I do blog for my own enjoyment, in addition to creating content that I hope will inspire, amuse, resonate with my readers. Doesn’t every writer write at least in part for him- or herself?

And if I can’t be unrestrained here on my own damn blog, then perhaps blogging is more of a performance and less of a creation.

Am I performing? My heart says no. I am sharing myself through this blog. Most people aren’t going to be interested, but that’s ok. Continuing to persevere, refine, practice, ship, is making a difference in my life.

I think what might be going on is that so far this has all been really, really easy. And the time might be coming when Life will ask me to actually do something uncomfortable either by blogging even more authentically, or stepping into another form of sharing and expression. Maybe Life will ask me to do something that could potentially impact individuals, one at a time. All I can think about is the two spectacular failures I have had when I tried to step into personal training and life coaching.

Dang it.

I’m reading “What to Do When It’s Your Turn” right now, so I pulled it out while writing this. I’m trusting:

“Not everything has to be okay. 

Perhaps it might be better for everything to be moving. 

Moving forward, with generosity. 

Moving forward, with a willingness to live with the tension. 

Moving forward, learning as you go.

The person who fails the most, wins.” 

(What to Do When It’s Your Turn, Seth Godin, p 23)

image from

Just saw this and had to add it.

Taking the Long Way

image from

Twice in the past week, I have spent a significant amount of time solving a problem, only to discover upon solving that there was also an easier, more efficient way that would take no more than two minutes. And yet, I didn’t come to the easy solution until I’d worked through the laborious process of understanding the multi-step solution.

If that’s not part of the human condition, I don’t know what is.

Pretty much every younger person doesn’t buy the solution offered by the older, more experienced person, preferring instead to make their own way. Toddlers for sure are all about “Me do it myself!”

The people who want to make their own way are the ones who are still joyfully diving into the art of living. Still believing they can make a difference. Still believing there is something new and interesting to come in the future. 

Those who have given up or ceased caring actually prefer the cliffs notes. They don’t want to do the work, to try and maybe fail, to get up and move. They’d rather take the easiest route.

As nice as it would be sometimes to figure out the quick solution without all the course work from The School of Harrd Knox, there’s little that compares with the satisfaction that comes from doing the work to create the solution.

I still believe. Do you?

The Shipping Connections

When you change your outside, your outside changes.
When you express what’s inside, everything changes.

I belong to a Down syndrome awareness/support group. The group meets every month for social events, and occasionally for educational events. Mostly interacting on Facebook, I believe I have attended two social events in the past 18 months.

Monday evening was the occasional educational event: a workshop on puberty. Never mind that I have four older children, two of whom are male. I have questions about this! Issues of personal space, awareness of social cues, and misunderstandings already are a reality for many people with Down syndrome. Add in hormones, curiosity, and sexual desire, and woohee, it sounds terrifying.

Needless to say, I attended the meeting. The leader, a 62yo woman certified in sex education, with 41 years of experience with the special needs population, had a lot to say. Less about puberty than most of us were expecting and a WHOLE lot more about parenting in general. She has seen the fallout from situations where parents do not require anything of their special needs children. It’s not pretty.

I came away from the event with some new things:

  • A kick in the butt to get on the stick with helping Kepler be as independent as possible.
  • The realization that I have a story to share. I have parenting experience that could be valuable to other parents and sharing my experience is stepping into something bigger.
  • Several in-person connections with people I had only talked to on Facebook or seen from a distance.

So what?

Kepler has been in his dance class since September. I rarely speak to anyone during practice. In fact, most of the parents there just read or look at their phones. This week at class, I caught up with Norma (the lady I helped with the parking issue), and Chris and Beth, moms who were at the puberty workshop. Chris and I had an across-the-room conversation about parenting our kids that I noticed several parents were listening carefully to. Two other moms even jumped into the conversation.

So what?

All of these things are happening because I am blogging; I am expressing what is inside me, what is in my heart, what I want to share with others. Reflecting on what I am experiencing is making my experience of other people very different. I’m starting to understand that shipping is changing how I am living my days, how I am thinking about things, what I am willing to risk, and how I see my contribution to the world.

Isn’t that cool?

What changes are you seeing in your life owing to the shipping you are doing?

Finding the Best Version of Me

I have this secret thing that I do at every movie. I scour the credits for my first, middle, and last names. I like to find my names in the credits of movies that are uplifting or encouraging or somehow speak to the best version of me.

When necessary, I even allow variations of my first name, like Sue or Suzanne. When I find my names, this is some sort of confirmation to me that the message of the movie applies to me. In movies about relationships, I also look for my husband’s name.

Tonight, we went to see “Still Alice.” I had read the book a few years ago, and as I do with most novels, had forgotten every last detail, but had a general impression of the book having been really good.

At this end of this beautiful film, I did my secret credits thing. One of the first non-cast credits was someone named Susan something. Susan was in the credits FOUR times (highly unusual). My middle and last names were also in the credits more than once. Plus my husband’s name was in there, too!

The message I took away from the movie was LOVE. Love of family, love between a man and woman, love of life, love between children and parents, sacrificial love.

One of the realities of living with Down syndrome is that early-onset Alzheimer’s (the subject of “Still Alice”) is quite a bit higher in persons who have Ds. I haven’t wanted to think about this. After all, Kepler is only 9, and he is as bright as the sun, and while cognitively slow in some ways, the thought of him losing himself is a thought I cannot allow myself to have right now. All we have is the present. Not everyone with Ds develops it, even if they have the higher levels of beta-amylase that are present in the brains of those with early-onset Alzheimer’s.

The message of “Still Alice” to me was to LOVE now. Love today. Love in every way I can. Receive all the love that is given to me. Love the now.

Do it. Love the now. 

Suzy’s Going Public Post

Yes, S-u-z-y. An online friend of mine, but I have no doubt we would enjoy many things together were we to meet in real life. Suzy’s Going Public Post spoke about her ongoing issues with weight and you can read about it here.

I, Siouxsie, have also had ongoing issues with weight. Now, I’m not talking about the little ups and downs that everyone has. Nor do I have the extremes of bulimia, eating entire cartons of ice cream, or weighing several hundred pounds. No, I have managed to hide my weight issues pretty well (I think). Most people wouldn’t guess my weight correctly, being quite surprised that the number is so high.

But it’s a secret burden, and a source of shame. Not my weight, per se, but the depth to which I plunge my heart into loss and grief by choices I make about what I put in my mouth. How many times have I gobbled up all the [insert junk food name here] for “the last time,” thinking that going ahead and eating it and not having anymore would somehow make the slightest difference? Hello? There are four Kroger stores three miles in any direction from me. I have a car. I have a drivers license. I do not hesitate to use them.

Over the years, I have dulled my senses and my conscience about food.

When I was a girl, my dad and I used to go to Bonnie Lynn Bakery for “emergency rations,” doughnuts to have along “just in case.” But it was really just for fun. I would go along with him on his drapery installations and hand him things as he stood on the ladder putting up the beautiful drapery rods and draperies that would beautify the homes of his customers. I felt like his Princess Assistant, so important, so treasured, so loved. Doughnuts from Bonnie Lynn were part of that experience.

Always, special times with Dad included food and meals. Grabbing lunch at the now-defunct “Burger Chef.” Running up to the United Dairy Farmers for a mid-afternoon chocolate malt (for him) and shake (for me). We had the “lunch bunch” with extended family members once a week. Thousands of visits to the pizza joints after Sunday evening church, and later in place of Sunday evening church. Lunches with just me and Dad. Chips and Pepsi shared companionably during thousands of quarters of football games. Trips to the Aglamesis Brothers ice cream parlor where we laughed and joked and told stories and felt happy.

My faithful mother was in the background, serving meals that included vegetables, cooking us hot breakfasts of healthy foods, whipping up huge meals for guests who would stop by. She is an amazing cook. The bar was set high in my mind.

Along came scientific research. Look long enough, and you’ll find the pro and con research about every food and drink known to man. Yes, eat more of this! No, don’t eat any of it! You know how Steve Jobs wore the same clothes every day because he didn’t want to use his energy on such a small decision? I’m like that. And when the decision doesn’t seem to have any clear answer, as is the case for me with food, I get paralyzed with inaction, and then eventually just say the hell with it and I get a pizza.

Suzy’s going public post put it out there that she was going to do something about her weight issues. And she did and she has. She lost 50 pounds and has kept all but 5 off for over two years. Clearly, she has made a lifestyle change.

That’s what this post ostensibly is about. Making a lifestyle change. But what the change needs to be is the question. What does the change need to be? I don’t know the answer to that yet, but I am sharing this with the world — I want to be healthy and vibrant. My current food choices are not making that a reality.

Besides the “putting into my mouth” aspect, there is also the “what to do instead” aspect, and the “letting go of the belief that changing my eating habits could ever alter the sweet, sweet times I had with Dad.”

This is going to have to be an ongoing process. I don’t have the answers at this time. As a matter of fact, I think I need to just allow myself to be lost in the wilderness of this right now. Accept that I am lost in the wilderness right now.

photo credit: Greg Taylor

There are benchmarks and signs in the wilderness that help one navigate, even if one only has a topographical map. Using a map and compass means taking the next steps and then stopping again to figure out where to go next. My map today says to acknowledge the trees that surround me and the darkness that seems to be most evident on the path ahead. My heart says to take the next step. Therefore, I create this post and share it, knowing that doing so is the courageous step that will help me find my way out of this dark forest.

Celebrating my Schweet Report Card Today

I stay at home a lot. Maybe it’s because of all those years when I was homeschooling all the kids and there was just a lot of sensory stimulation coming at me all the time. Although I really miss some things about those times, I do treasure quiet time in my home. Until this school year, I didn’t get more than a few hours per week. Now that my 16yo is in public school full-time, and Kepler is in school all day, I do have more opportunities for solitude.

In The Year of the Heroin, I said no to many, many events, often at the last minute. It made sense at the time, as my energy and attention were completely consumed with the emergencies that I was facing regularly, and the worry that consumed me the rest of the time.

Since I have been blogging daily (36 days now), I have seen a huge internal shift happening. Because of blogging my grade standards the other day, when an event came into my awareness today that I had previously said maybe to, I acted on my inclination to say yes.

The event was a party with a huge group of families who have children with Down syndrome, autism, and other special needs. Having made the commitment to go, I decided to do the most that I could. I walked up to person after person at the party and introduced myself, learning their names and their children’s names, and investing in connecting with the people who were there. I was willing to look stupid by asking someone their name again two minutes after I had met them.

I’ve let my forgetfulness stand in the way in the past. Afraid I would forget someone’s name, I would rather not try to meet people. But in this, The Year of the AssPanther, I figure it’s worth it to try and fail, and try and succeed, rather than not try at all.

I have used the introvert excuse many times. “Oh, parties drain my energy.” And, indeed, about 90 minutes into the party, I noticed my energy was going down. Instead of retreating, I decided to STAY and ENGAGE. 

A couple and their child was sitting along the edge of the room, alone, and I went and plopped down next to the mom. I may have asked all the wrong questions, and had the wrong look on my face, and just done it all wrong, but I tried.

Interestingly, today I did not in any way see myself as better than or less than anyone else. Typically, I have had to see myself in some sort of hierarchy with people. But not today. I really stood eye to eye with everyone I spoke with.

And, of all things, I realized about an hour into the party that I had not even checked my phone once.

Finally, I went up to the musician and asked her a bunch of questions. Turns out we have several connections I was unaware of. She’s in a small music group that plays at coffee houses. As I have been wanting (for apps 20 years since Australia) to be in another band, I asked her if they need any back-up singers. She invited me to come along to one of their shows and come up and sing on a song or two.

Besides the party, I prepared a care package for my away daughter, put my things away as soon as I got home, made my bed, took steps toward overcoming set-down disease, looked people in the eyes and asked about their lives, processed email for 20 minutes,  and blogged daily. 

Today I danced, sang, moved, reached out, risked, said yes, loved the now, gave of myself, and had a ball in the process. Sweet.

This Lovely Snow Week

While my friends have (understandably) been crying on Facebook about the inconveniences of this snow week that we’ve all ended up having, my own week has been exceedingly sweet. This was a home week for my traveling husband, which is always nice in itself, since the traveling weeks ask me to be in two or three places at once about twenty times during the week. Thank the shiny stars above my family is able to help out with driving!

But, I have been griping about the snow and the cold. So inconvenient. Makes the roads bad. Gotta shovel the sidewalk and steps. Ugh. Ugh. Ugh. The cold is ridiculous. Feels like -24 degrees? We’re all going to freeze to death if we just walk to the mailbox.

Today, the cold abated while the snow raged on. I decided to walk in the snow to my mom’s house (1 mile away) to help her with some computer things. On the way over, the snow had mostly stopped, so I snapped a selfie because pics or it didn’t happen.

Red and Pink and Red and Blue, Snowy, Snowy, Snowy, Sioux
I spent about 2 hours at my mom’s, and we had a great time. By the time I left, the snow was falling again. Huge, beautiful flakes. Now, everyone of course has had enough snow photos to last the winter, but I took this little video (13 seconds):

Although the streets had been plowed, the sidewalks were deep in snow. One of the roads is pretty busy, so I walked on the sidewalk there. Stepped deep in snow, over my boots, a good workout! As I walked, I realized something:

Snow is fun and beautiful and lovely when you are walking in it. 

Hmm, another picture of life? I can stand on the sidelines and complain about not having enough time, or wanting something I don’t have, or feeling overwhelmed. But when I actually participate, and get in the arena, all I see is the beauty. Even in the midst of difficulties, the beauty is there to see, if only I join in, immerse myself, and allow what is to be perfect just the way it is.

Happy New Year

You know how you have that tool or appliance that is high quality and does such a good job? And of course we all also have the less effective versions – the coffee maker that doesn’t drip right, the retractable cord that doesn’t retract? I have a good old vacuum cleaner that DOES THE JOB RIGHT. I have a second one that’s handy for quick run-throughs or for when one of the kids has to vacuum. But for me, when I do the job right, I get out my good vacuum.

What I needed to do today couldn’t be handled by the backup, so I used my BAE vacuum. Referring often to my “grade standards” from yesterday’s post, I fulfilled a good number of them just in this one job.

As I vacuumed I realized that I was doing something bigger than simply sucking up dust. I was actually bidding farewell to The Year of the Heroin, and the dust I vacuumed up was the dust from the despairing, troubled me of last year. Loving someone who is addicted to heroin makes for some hellish times. As the vacuum’s motor roared in the background, I thought of the me from last year with great compassion. Every parent who deals with drug addiction in their child grieves, cries, fears, despairs, hopes, denies, bargains, cheers, wishes, dreams, tries, and tries again.

So today was my adieu to that particular year, along with The Year of I Think I Am Too Old for This, The Year of This is Too Damn Hard, The Year of Give Me Another Twinkie so I Can Escape, and The Year of I Can’t.

Ah, but in saying au revoir to a year, one welcomes in a new year, like the Chinese just did this week.

Today is the beginning of 

The Year of the AssPanther 

(h/t to Valerie Taylor for the inspiration).

Hopefully, in taking risks and trying new things this year, I might make an ass of myself a time or six, and I’m going to have Panther Intensity in the process. Some days will be more ASS than panther, no doubt. But I’m aiming for Panther Power.


What if we Still Received Report Cards?

What kind of grades did you get in school? In college? How important were grades to you?

Imagine if we still got graded as adults, receiving a report card periodically:

Here are my subjects/categories for this day:

  • Showering the people I love with love
  • Keeping Important Stuff from Becoming Urgent
  • Following the Path to Excellent Town
  • Living and Telling my Story
  • Being a Real Bunny
  • Stepping Over the Edge
  • Yowch!
  • Shipping News
  • Tiramisu for my Mind
  • Watching and Listening to Ahs for my Soul
  • Sharing like a Big Girl
  • All the Diamonds in This World
  • Be Careful, Little Hands, where you Put Your Stuff!
  • Doing the Best Version of the Job
  • Walking My Theory Feet into My Action Shoes
Maybe this is a different way to approach the values clarification discussion. I cared about my grades. They helped me see whether I was doing the work.

These days, teachers and professors clearly define what it takes to achieve a certain grade. I’m my own professor now. What would it take for me to get an A in my subjects? Here is my grading scale.

10 self-defined Standards per Category/Subject

Number Met
Yeah, BABY
Getting There
Let’s Try Hella Harder

Could this work? Would it be too cumbersome? Is it worth a try? [yes] The act of defining the standards in itself creates a more intentional lifestyle for me.

I decided to go ahead and create my lists for these categories. So, I’m trying to distract you in case you would rather not read them. They are probably not all that interesting to anyone besides me. You are welcome to read them for edification, education, erudition, exclamatory expressions, etc. But feel free to skip them as well.

What categories/subjects would you like to receive grades in?

Showering the people I love with love
Telling those I love that I love them, every day. 
Sending monthly letters and packages to my away loved ones.
Getting gifts and cards shipped and mailed in time to arrive on or before the special date.
Being on the lookout for small tokens/gifts to show my love and appreciation
Taking good care of myself; speaking well of myself
Receiving compliments graciously
Being affectionate with the ones I love; touching them
Keeping the pantry stocked with their favorite foods
Making sure the bathroom is clean
Getting up at a reasonable time and being productive
Keeping Important Stuff from Becoming Urgent
Bills are paid on or before their due date 100% of the time.
Online payments are initiated in time to process by the due date.
All tax payments and estimated taxes are paid by the due date.
Gifts and cards for special occasions are mailed/bought in plenty of time.
I complete jobs by the date I commit to
Arriving at appointments on time without speeding like a maniac
Allowing myself extra time to accomplish anything
Using the library without incurring fines.
Paying off credit cards every month
Grocery shopping on a set day every week.
Following the Path to Excellent Town
Doing the most I can in a situation
Making and keeping regular checkups
Making my bed every day
Taking pride in my appearance
Taking pride in my home
Eschewing all fast food, but especially Wendy’s, Boston Market, Kroger fried chicken
Finding out how to clean my house efficiently and regularly, and doing it.
Overcoming set-down disease. 
Cleaning as I go.
Embracing the messiness of being human.
Living and Telling my Story
Blogging daily
Reading The Message of Me as committed
Setting goals for sharing my story in at least one speech
Connecting with a person face-to-face every week
Looking for opportunities to share my story
Finding a way to observe or practice improv
Act on impulses which urge me to action
Be willing to fail
Complete the storyline exercises
Write for a set time every day with butt in chair
Being a Real Bunny
Looking people in the eyes
Asking about their lives
Giving the person I am with my full attention
Keeping my phone away when I am with someone.
Saying yes when I mean yes.
Saying no when I mean no.
Acknowledging my feelings, aloud where appropriate.
Asking for what I need.
Being willing to receive help even if not at death’s door.
Not engaging in activities I think I “should” do
Stepping Over the Edge
Saying yes when I mean yes
Saying no when I mean no
Acknowledging my feelings, aloud where appropriate
Asking for something I want without assurance of getting it
Shipping/blogging about things I am not completely comfortable with
Stepping boldly into bigger things as they arise
Finding times when I can do something other than play it safe
Trusting people I have been afraid to trust
Trying a new activity/group/way of thinking
Doing the most I can
Limiting or eliminating my cat naps
Making healthy choices about food
Going to bed and getting up at a set time
Fighting through negative thoughts to get to the positive ones
Saying no to what I need to say no to
Experimenting with outgoing behavior in group settings
Limiting or eliminating credit card use
When tempted to Fight or Flight, STAY and ENGAGE
Learning to delay gratification 100x better than I do it now, or
even 1/1000th better
Going outside and walking no matter the weather
Shipping News
Blogging every day
Getting the blanket supplies by March 1
Making a weighted blanket by March 15
Surveying moms of boys with Down syndrome about special clothing needs by March 1
Attend the Lifestream of SisterGiant (3/28-29/15)
Create list of 20 for ScaryClose group by March 8
37 Fling Boogie 3x week Feb 20-26, 2015
Revive profiles on elance and odesk by March 4
Create outline for Down syndrome presentation by April 1, 2015
Continue discussion with TL about creating Improv group
Tiramisu for my Mind
bloom, a memoir
The Message of You
What to Do When It’s Your Turn
Infinite Jest
Blog posts by fellow UTYC members
Blog posts by Martha Beck, Geneen Roth,
Reading good stuff every day
Responding in writing to some of what I read
Do more creating than consuming
Read book club book and interact with it
Watching and Listening to Ahs for my Soul
Define what it means to feed my soul
Drunk Ex-Pastors every week
Marc Maron WTF podcast once a week
Limit episodes of Netflix shows to no more than two per day
Reflect on what I am listening and watching
Create a list of shows and movies worth watching for this purpose
Create a list of questions to ask about a show or movie
Write about my musings
Listen to ebooks and write reviews of them on Goodreads
Walking at the park and looking around me
Sharing like a Big Girl
Volunteering in Kepler’s classroom
Spending quality time with Kepler doing the 3 r’s
Help people throughout my day as I meet them
Do more creating than consuming
Celebrate others on social media
Ask my sisters and mom how I can support them
Reach out to JE on a daily basis
Continue discussion with TL about improv class
Blog daily
Contribute in the schools in the ways that nourish me as well
All the Diamonds in This World
Print out texts and comments that are meaningful and supportive
Freely ask for help even if not at death’s door
Say yes to generosity from others
Drink in compliments
Receiving with gratitude the lessons the School of Life presents me with every day
Trust that others can be responsible for their own feelings
Focus on the joy that DB gets out of clearing our driveway
Keep the good energy moving — take it in, give it out
Asking for what I need or want
Stepping boldly into bigger things as they arise
Be Careful, Little Hands, where you Put Your Stuff!
Manage clerty clothes by hanging, laundering, or folding
Keeping track of charging cords, lip balm, glasses, purse
Regular joyful clearing space for joy by decluttering
Processing email every day for [20] minutes (OHIO)
Pick up living room every day — have Kepler help
Share my extra things with others
Create to-go lists/bags for each outing, esp for Kepler
Fix house stuff within one month of noticing, or have plan by then
Clean: K-Mon, LD-Tues, FStrs-Wed, OK-Thurs, MBR-Fri, Ba-Sat
Laundry start to finish one day per week
Doing the Best Version of the Job
Putting folded clothes away where they belong
Washing up the broiler and griddle same day
Create and use OHIO system for my paperwork
Practice making decisions NOW
Schedule my day a little more
Do the work (It’s always my turn)
Persevere and finish what I start
Put my stuff away when I come in the house, first thing
A place for [every]thing and [every]thing in its place
Spend time thinking about what result I want
Walking My Theory Feet into My Action Shoes
Actually do the things on my list of things that make me feel better
Fulfill what I commit myself to
Take care of myself by scheduling appts for myself and kids
Have a spending plan and carefully adhere to it
Find my yes in the uncomfortable no’s
Do what it takes to stay in a good brain space
Commit to paper the results that I want
Let go of something every Friday
Practice Making Decisions NOW
Join the Mobius of Giving/Receiving

Second Snow Day — Educational "Eggsellence" at Home

Come on, Kepler, let’s make pancakes!

He presses his little hands together in excitement, and has a look of absolute glee on his face.

I get the step stool for him and he looks on with enthusiasm as I pull out the milk, eggs, wheat germ, flour, applesauce, and baking powder.

Chef Kepler 

In my newfound enthusiasm for all things experiential education, I involve him as much as I can. Pancakes were made, but my favorite part of the process was when I was showing him how to crack an egg.

I tapped my egg gently on the stove and showed him the tiny dent in the side. He TAPPED his egg NOT gently on the stove and kinda broke it. It was still relatively intact, but some of the egg white came out and TOUCHED him.

“GWOSS,” he yelled and flung it on the stove.

What do they say about embracing life? It can be messy?