Saturday, February 28, 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.

Friday, February 27, 2015

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?

Thursday, February 26, 2015

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?

Wednesday, February 25, 2015

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. 

Tuesday, February 24, 2015

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.

Monday, February 23, 2015

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.

Sunday, February 22, 2015

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.

Saturday, February 21, 2015

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.


Friday, February 20, 2015

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

Thursday, February 19, 2015

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?

Wednesday, February 18, 2015

A Very Memorable Snow Day

Some of that wintry, white, unwelcome stuff fell from the sky yesterday. A snow day for today was called last evening. We all rejoiced.

Most of my friends around here posted pictures of themselves and their children SLED-RIDING, as if that is fun or something? Been a long time since that sounded like fun. OK, Kepler would probably might like it, after we got him clad in snow pants (must buy), boots (must buy first), waterproof mittens (on the list to buy after the boots), a hat, a scarf, insulated long underwear, electric hand warmers, lotion for his face, a warmer coat, wool socks (must BUY), polypropylene liners, plastic bags to futilely try to keep his feet warm, something extra for his ears, and a thermos of coffee and one of brandy. You just KNOW after working for two hours to get him outside, he'd be ready to come back in in 3.5 minutes. Ain't NOBODY got time for that.

So, sled-riding is not the first order of business on my mind. Instead, today we went to the Krohn Conservatory, where they were having the Falling Water Gardens display. Based on the designs of Frank Lloyd Wright, it sounded like something we would love to see.

THIS was the kind of day I was imagining when I wrote my blog about homeschooling. The smell of the dirt, the humidity in the air, the colors of the flowers, the textures of the cacti, the motion of the waterfall, Kepler running, absorbing, smelling the fragrances, touching something real. Making the kind of memories that last. Didn't have to homeschool to make it happen; just needed a snow day.

Dear daughter wanted to stay there permanently.

Orchids are magic.

Actual flowers I took an actual photograph of.

Tuesday, February 17, 2015

A Crazy What If

Exploring the question of homeschooling Kepler is not something I have considered for more than ten minutes his entire school career, which began two days after he turned three years old. His teams at school have always been filled with loving, experienced, knowledgeable professionals. Why would I even consider this? Because I am, that's why.

As with most kids with Down syndrome, he is delayed in many ways. The gap between the typical kids and Kepler just gets wider and wider every day. I have great confidence in his team to help him reach his IEP goals, and indeed they are, but there continues to be this nagging question for me of what he and I might accomplish together at home.

First, I think of the field trips we might do. Going to the aquarium time and time again, touching the animals in the touching pool, learning about what we see. Visiting the zoo with books about elephants and giraffes and zebras and penguins and reading the books right in front of those animals. Going to the park and exploring. Climbing, wading, running, walking, examining, looking, learning.

I think of trips to the forty-one branches of the public library, where every branch is chockers with books and puzzles, librarians, time to browse and explore and learn.

I imagine trips to the grocery store, Whole Foods, hardware stores, hat stores, toy stores, antique shops.

Museums. Art museums. The Natural History museum. The Children's Museum.

Lessons. Art, music, martial arts, drama, dance.

Sports. Swimming, baseball, Special Olympics, tennis, ice skating.

And the academics themselves. Creating collages, reading, spelling, writing, learning to add and subtract, fractions by cooking, games upon games upon games. And no school calendar to work around!

Yet, I imagine that the school system can give him way more than I can. That they are equipped in a way that I am not. That the socialization he gets there outweighs the benefits he might get at home.

Most days, I can't wait for that school bus to arrive and transport him to school. Yesterday, the bus didn't come, since it was Presidents Day. Having been sick last week slowed me wa-a-a-a-ay down, enough to be willing to say yes to Kepler when he asked me to play some games with him. The child is delightful. He is hilarious. He is playful. He's engaging and engaged. I have more educational resources than some third world villages.

I wonder what it would be like to actually dive into parenting him by assuming the role of educating him. What would it be like to take responsibility for that portion of his life? Well, apparently, I have a lot of ideas.

What if he could learn at home, but go to school most days for recess and specials? How would I ever get breaks? What if I'm really equipped to teach him what he needs to know to become independent? What if he never becomes independent? What might the two of us experience together that bonds  us even closer? What would he miss? What would he gain? What if I tried it without being attached to a particular outcome? What if I failed? What if I succeeded?

When I homeschooled the big kids, I was doing FOUR grades at once. And I thought I had to do and be everything to and for each kid. Turns out, I gave them some amazing stuff. Turns out, I missed some big things. Although, my experience homeschooling the big kids doesn't  have to really be related much at all to homeschooling Kepler, if I were to try it.

The biggest challenge I imagine is being isolated. I already am pretty isolated, and that suits me pretty well most of the time. But I do get lonely and I would like to be more connected to people. What if homeschooling him actually led to more connection and less isolation?

What if?

Monday, February 16, 2015

Norma's parking dilemma and I have a big realization

Andrea Gold blogged a couple days ago about Valentine's Day. She suggested that we add in giving something to someone to make them feel loved, someone who might not otherwise experience being celebrated.
"So on this Valentine’s Day, I wish you a loving day with your loved one. And/or that you may do an act of kindness for someone else, even a stranger, so they feel loved and not so alone in this world." 
I read her post and realized that while I loved the idea of doing this, it scared me, and so I committed right then to doing it.


On Valentine's Day, we arrived at the Marriott for the dance competition and found our gathering spot. Everyone was sitting around on the floor, as there were no chairs. A few smart (or maybe just arthritic) people had thought to bring soccer chairs. The kids were excited, and more so when they each received a gift bag full of Valentines and candy and excitement.

Normally, at dance practice on Tuesdays, I don't say a word to anyone. We are, like most waiting groups these days, all staring at our smart phones. A few extroverts chat with each other. A few announcements are shared at the beginning or end. Practice is only 45 minutes long, so it's very much a waiting time for me.

Because of the excitement and novelty of Saturday's competition, I was a little more available to talk to others and be interested in them. Knowing my propensity for rushing from one thing to the other, I had determined that I was NOT going to rush on Saturday to get to the venue. We left plenty early, and I decided that under no circumstances would I allow myself to feel rushed, or otherwise revved up inside.

When we arrived, the snow was blowing sideways. It was bitter cold outside. We did find a parking spot easily, and I had no trouble figuring out the payment machine. Kepler rushed us from the car to the hotel as he was adamantly opposed to being outside in blowing snow.

With the ease of arriving, and the lack of internal pressure, I was available to interact with the people around me. Norma, a grandmother of one of the dancers, was holding her parking ticket in her hand. Turns out she hadn't been able to figure out how to work the payment machine and had paid for too short a duration. I gave her my full attention and explained to her what needed to happen to keep her car from being ticketed.

Norma was so worried about the parking. She wasn't sure what her parking space number was; she didn't understand why she couldn't pay for more. She hadn't left her ticket on the dash as instructed. She didn't even understand why she had to pay at a machine, rather than to a person.

I realized that here was my Valentine. I walked outside with her, back to the lot, helped her figure out her parking space number, helped her pay for her parking, waiting while she put the ticket on her dash, and then we walked back into the warm hotel. We stuck together for the rest of the day.

This story helped me understand what my blog is for.  My blog witnesses me. That's why I'm not raking in the big numbers of followers. I'm not sharing business tips, popular mothering tips, better ways to live and love and learn. I'm simply about being witnessed by writing in this space. Now, whether or not I have other purposes for blogging yet to be determined, I don't know. But the realization that my blog feeds a deep need I have seems like a fairly big realization.

Where do you feel witnessed?

Sunday, February 15, 2015

A Few Questions Raised by my Experience at a Dance Competition

The auditorium was divided into two performance halls. The music pounded; spotlights flashed in every direction; the door boasted a sign that advised the audience of the use of strobe lights. Every dancer there was doing his or her best. Toes pointed. Highest jumps. Big, big smiles. All day. For two days.

Toward what end, I wonder?

Many teams wear eye shadow guards, which press down on their eyelids and cause headaches after several hours of trying to keep their eyes wide open. The sparkle factor is out of control. Sequins on every square inch of torso; jewels glued to the faces; heavy makeup on the tiniest tykes; glittering pom-poms for team after team.

Dance comps must be a huge boon for the hairspray industry, as those hairdos were stiff as concrete, and all about that updo.

It must be exciting to be on a team. I think I would have gravitated to such a thing had they been around in my childhood, but I doubt my parents would have thought it a good idea, either from a financial or otherwise point of view.

What's in store for these perfect little bodies that put themselves through such hard, hard practice and work and must be so energetic. Is there any downside to putting on SUCH a huge show? Do they feel letdown afterward? As they drive home, without the pounding bass, the flashing lights, the applause, the constant overstimulation, do they feel tired?

Is it just that I'm a practical, tired, old, introverted person? Or is there something out of balance in the excess that is dance competitions? Should we do it just because we can? Should we do more just because we haven't expired from the exertions of the day? Is there still a higher fever pitch that these girls can whip themselves into for the next competition?

Our Little Superstar

One of the reasons I worked so hard to get well this week is because Kepler's dance competition was today. He had a Christmas concert in December, this competition today, and then there will be a final recital in May. It's not like we could really miss any of them.

JamFest National Competition was today. Kepler's dance troupe is called The Star Performance Superstars. There are about 24 dancers from the tiniest girls and boys to young women in their early 20's. All of the Superstars have some type of developmental delay or disability. Every Superstar dancer has a dance mentor who works with him or her on and off stage. Kepler's mentor is a wonderful young woman called Kelsey. Here's the photo journal of Kepler's experience today.

note the red shoelaces!
a total Valentine's surprise for all the dancers

as Kepler would say, "APPISE!"

enjoying himself wherever he is

the big move: "Lift and spin Kepler"

jamming to the beat

excited to see Mom!

Look at my medal, Mom!

Espies sister and gives her a big smile

I'll see you again soon, fans.

Proud of his work and his award.

Saturday, February 14, 2015

I Turned My Phone Off Last Night

image by poof-geek on
Last night, I turned my phone OFF at 9:30 pm. Off, not airplane mode. Off, not do not disturb. Off, not do not vibrate on silent. Just for a point of reference, I think the last time my phone was off at night was approximately 4 years ago.

Things I did not do in the night:

See the little red circle with a number urging me to check Facebook for notifications.
Check email just one more time.
Whip through 20 games of solitaire while listening to something.
Do some sudoku to keep my brain sharp. (lol)
Pick up my phone.
Google something. 
Write a blog post.
Add to my grocery list.
Look at Twitter.
Listen to a podcast.
Check tomorrow's schedule.
Respond to a text.
Buy something.
Pay a bill.
Transfer money.
Check the time.
Watch a movie.
Click on a link.
Excite my brain.
Stimulate my brain.
Mess with my circadian rhythm.

Thing I did do in the night:


Are you keeping your phone on at night? Using it as an alarm? A Clock? Take a minute now and ask your brain if it would like to rest from that light and noise at night. We've got to shut down and unplug and rest sometimes. How do you do that? 

Friday, February 13, 2015

Should we pray for a good parking space?

image from clipart
I read a blog post today by a thespian I have mad respect and love for. His question was "Should we pray for a good parking space?" I'm really hung up on this question. His point was that if we have a close, personal relationship with god, of course we will ask him for things like this because it's just like we would talk to someone we love sitting in the car with us. So, I get his point. Kinda.

But I'm hung up on the question because I can't really imagine asking god for a good parking space, even back when asking god for things was something that I did. There have been countless times when Kepler needed me to carry him, and I just did it, without thinking about it. I mean, I recognized when I was walking far, carrying this 54 lb. child, but I would have just never thought of praying and asking god to provide a parking space for me by the door.

First of all, I'm strong. Whenever we go to the doctor, there are often elderly people walking slowly to the door, clearly unwell. I'm cool with parking wherever a space appears and letting the universe sort out everything. By the same token, there are now spots at my pediatrician office that say "Special Needs only." And I park there without blinking. I don't know if they mean Down syndrome special needs or not, but it is tremendously helpful to be able to park closer, especially in bad weather.

Secondly, is a parking place close to the door always a good one? There's something really bugging me about this. Again, I think of the 90yo woman or man, maybe less steady on their feet, maybe with greatly reduced flexibility and stamina. I guess there are people for whom the task of going to the store is really overwhelming, and parking in space 2 is going to make it manageable whereas parking in space 54 will tax their lungs and muscles.

But for able-bodied, relatively healthy people, walk!

I guess maybe I'm missing the point of his article. If I have a cozy relationship with god, I'd want to ask for every little thing, I guess? God, please let there be the pasta I like at the store today? God, can you make the traffic lights green since I am late? God, hey, can you help me find my missing shoe real quick? God, please help me remember the answers to the biology test? Just seems to me like that's not taking responsibility for myself, and not being willing to adjust to things as they are.

I suppose it just doesn't really work for me to outsource things like this. And, probably, bottom line, it's been a long time since I really believed god was that involved in daily life kind of things. I guess, for people who do believe that, getting a parking space, or the last Vera Bradley in that pattern feels like god is paying attention to them. I much prefer taking things as they come, and sussing out the little gems in the gifts that are different than I had imagined.

So is it really a faith issue? A relationship issue? A preference? Maybe all of the above? Maybe I'm just leaning more toward a Buddhist understanding of suffering, that is, being attached to an outcome is what leads to suffering. Please note, I am not talking about people who are in abusive situations, or abject poverty, or dying in a famine. I'm talking about people like me, who are among the wealthiest people in the world, not only in financial terms, but also relational, social, artistic, cultural, geographical, and educational.

No, I don't think I'll be asking god to provide a nice parking place for me. If I were going to ask for anything, I think it would be to be aware when one of those 90yo people needs an arm or a hand; to notice the people around me and be willing to connect if the opportunity arises.

Thursday, February 12, 2015

The Grace of Reaching Out

created by Kepler, February 2015

When I awoke yesterday, I was completely dismayed to discover that my wicked bad sore throat was back in spades. The idea that I was getting better was completely decimated. In desperation, I reached out and asked for help.

I let three lovely someones know that I was in pain, struggling, and in need. All three immediately responded. Throughout the day, I was blessed by my angels putting Kepler on the bus, rubbing my feet, making me smoothies, soothing me with a warm cloth, picking up the slack for all the driving I was supposed to do, washing my damn dishes, getting Kepler off the bus, and speaking words of support and love. 

Even writing that paragraph is difficult if I focus on the fact that I was in such a low position, one where I could do little more than receive. 

On the other hand, I love it when I have the opportunity to do something for someone who truly needs me. I know the women I reached out to; they all have giving hearts, and I believe they treasured the opportunity to give. 

So, I accept it. When the critical voice scrapes across my consciousness, I remind myself that I believe in interdependence; that we all need a little help from our friends and family; that the presence of need means I am human, not defective. 

With the space provided by my mom and sisters, I could finally think about turning down the intensity and volume of my everyday existence. Remember I mentioned being overwhelmed. I noticed that every nook of my bedside table was full to overflowing. Before bed, I decided to calm that space down. The drawer is slightly larger than an iPad box. It's pretty tiny. Here's what I pulled out of the drawer: mail, 3 pocket knives, a shot glass, jewelry, nail clipper, lip balm, unopened medicine spoon, earbuds, 27 vials of prescription eye drops that i do not use, replacement earbud pads, lightbulbs, trash, glasses cleaning cloth, a key, ink pens, wristwatch, lifesavers, a 2 oz bottle, mouthguard, a little black mysterious thing, and a scrunchy. That is a ridiculous amount of stuff to have jammed into that tiny drawer. 

Now that I've solidified my reputation as a packrat extraordinaire, let's just focus on the fact that the sheer volume of what I had stuffed in that drawer is kind of a perfect little picture of what I've been doing with all my "too much." Stuffing it here and there. And there. Here's more. And under there. 

Everyone needs the space to clear their space, and I'm sure that means different things for different people. This illness has been a time for me to slow down long enough to notice the pot I'm boiling in. 
For someone with as strong a Meyer's Briggs "J" as I have, I LOVE the journey. I love the opportunities that arise to learn. I love sharing my journey with others.

What are your tried and true methods for clearing YOUR space? 

Wednesday, February 11, 2015

I Miss my Spleen. A Story.

I am reposting a blog that appeared here a couple of years ago. It is the story of how I lost my spleen.

I've been missing my spleen this week, as I have been fighting a mean infection.

This is the first time in the long and storied history of Siouxsies Musings that I have ever reposted something. But it is simply the next step in my story.

Realizing that not everyone wants to click links, I will also put the text of the original post here:

MONDAY, APRIL 22, 2013

S is for Storytelling: A Sled, A Spleen, and Siouxsie

With only two days left before Christmas vacation, the snow began falling early, but not early enough to score a snow day. We all focused on the snow even as the teachers asked us to focus on the blackboard.

After school, Linda and I completed our chores, put on our snowpants and mittens, and met outside in her front yard with our sleds and our excitement. We knew Judi's yard had the best sledding on the street, and we were more than ready to ride joyfully down the hill after a year of memories and anticipation.

While Linda stood contemplating the hill, I noticed there was a little bit of an extra hill behind us so I suggested we start from the tippy-top to enjoy the extra speed that would surely result from such a daring start.
Gallantly, I offered Linda first dibs. Her face clouded up. No, she said, I'm too scared. Overly bold, I declared I wasn't scared, and hopped into her sled (it was cooler than mine).

All of the kids on the street had been down this hill a thousand times, but this was the first time this year. Eagerly, I started down the hill. Just as my descent began, the back corner of my sled bumped the corner of the sandbox and altered my course just enough so that I knew immediately that I was on a collision course with the tree.

In this "artist's re-enactment" you see many trees. But in reality, the tree I was headed for was one of only three on the hill. And there was plenty of space between them.

In an attempt to miss the tree, I rolled partway to my right, and then a little more, and just a teensy bit more, effectively stretching out the skin on the left side of my abdomen just as taut as could be, and

 BAM, hit the tree.

I knew I was hurt. All I knew was I needed to get home. I jumped up, and ran full-tilt all the way down the street to my house, thereby inadvertently allowing the internal bleeding to ramp up to a fast flow.

Once home, we settled into our normal injury/medical routine: wait to see if it gets better on its own. Judging by the stabbing pains I experienced all night long (due to internal bleeding), it would be safe to say it wasn't going to get better all on its own. However, I was still alive in the morning! Barely able to walk; weak as a newborn kitten; unable to keep even a sip of water in my stomach. "I ... want ... to ... go ... to ... school ... ... please. Can't ...... break ... perfect ... attendance ... streak." Mom decided that perhaps these symptoms were suggesting a trip to the doctor, rather than the preservation of my perfect attendance streak, so off we went to see Dr. Blatt.

In about ten seconds, he had me diagnosed: ruptured spleen, need surgery NOW.  I didn't really care at this point. Thankfully, it wasn't up to me to get it done!

Back before hospitals and health care were so strictly monitored, one was admitted and kept for quite some time for such a procedure. I was in the ward for two weeks, which constituted my entire Christmas break. My two sisters bravely agreed to postpone Christmas until I could be there with my family.

What remains:

  • This lovely scar, eight inches across. 
  • The opportunity to write on a million health forms, Splenectomy 1974, and to answer the consequent questions about what happened. 
  • An amused recognition that all I really needed to do was roll out of the sled and I would have missed the tree completely!
  • complete set of non-perfect-attendance records in my school days. 
  • boss immune system which picked up the slack resulting from losing my spleen.
  • precious memory of playing Boggle for the first time with my dad that Christmas and finding the word SPLEEN. (I didn't ever think to ask if he had stacked the cubes!) 
  • Gratitude that my body did what it was designed to do, stopping the bleeding on its own, and getting me through the night and through the surgery.
And a lovely quote from Chris Cleave, author of Little Bee (highly recommend!):

“On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived.” 
― Chris CleaveLittle Bee

A scar means I survived. 

Tuesday, February 10, 2015

Childish perceptions can be Tenacious

I had a great c25k run with my daughter on Friday, as I wrote about here. When I got home, I felt energized, empowered, enlivened, and excited. Two hours later, the most painful sore throat ever descended on me. Boom. I couldn't even sleep Friday night because of the pain. Saturday, the CNP, she of "hon" predilection, prescribed a med and then said I'd be feeling much better in 24 hrs and back to normal in 48.

My literal mind took note of the time frames. By 24 hours, I was just as bad and that was bad. By 48, I was on my way to see my actual doctor because I was in agony by now. And I had no answers, never a happy thing when I'm in pain. 

Some of our early life lessons, when they conflate scary stuff about eternity with the developmental phase of learning to trust, well, that shit gets buried deep. Like deep enough that even after leaving that religious faith and finding tremendous joy in letting go, something like an unexplained sore throat can be a trigger.

On the way to the doctor, I ....... ACTUALLY .......  entertained the idea that one of those early life lessons might have validity; namely, that because I have walked away from the religion of my childhood, god was going to just go ahead and kill me to teach me a lesson. Death by sore throat!

See, we knew this woman who divorced her husband, and sometime not long after, she died in her sleep. She was really young. It was reported to me that the cause of death was at least in part god taking her life because she was so selfish (said the pastor at the funeral). I had already internalized that I was NOT to love anything or anyone more than god. That's the clear message of Luke 14:26  (If any man come to Me and hate not his father and mother, and wife and children, and brethren and sisters, yea, and his own life also, he cannot be My disciple." That's the King James version, one I abandoned at least 30 years ago, but the version I read as a child.) (Remember what I said about having a brain that takes things literally,)

Basically, the larger lesson was that god was on the lookout for my screw-ups, and once detected, I was TOAST.

Thankfully (!) it only took a couple minutes for my rational mind to reassert itself and point out that everything was very likely going to be just fine. Sure enough, a second med was prescribed to address a different aspect of the sort throat, and after one dose, I began to feel noticeably better. However long it takes me to fully recover, I'm pretty sure this isn't happening because I'm in trouble with the big kahuna.

How about you? Are there things you were taught early in life that are unwelcome intruders?