Wednesday, August 29, 2018

Building a Wall

Brady P. and I sat in the late morning sunshine on the shore by the Jamsen's Fish Market and Bakery.  I shared bites of our turnover with him as he threw rocks.  He was between the low sun and me, so his face was mostly a silhouette. 

A little girl, about 4 years old, was on the beach too.  Her blonde curls sparkled in the sunshine and her face was smudged with chocolate donut from nose to chin.  I chuckled.

As she walked past us, I moved my feet back to give her room.

"I'm looking for treasure," she announced.  I looked at her open palm filled with beach glass and other shiny things.

"Well, there's lots of treasure here!" I assured her.

She scooted around to the other side of Braeden and gave him a look.  From her perspective, the sunlight illuminated his face.  Then she looked at me and asked, "Why does his face look like that?"

My heart stopped.  Surely she didn't mean that he looks different because he has Down syndrome.  I shifted my bum in the rocks. 

"Look like what?" I asked, unable to hold back the wall of defense that was quickly building around me from the inside. Suddenly my belly button was shooting out bricks and laying them high and tight.

"Like that," she pointed, unsure of how to describe it.  Unsure of what she saw was different.  She was just a curious 4-year-old ready to learn and be molded by an advocate: me.

Now, I wanted to ask her what she specifically noticed was different.  I was going to ask if she saw something different in his eyes.  Or his nose.  Or ears...  How does a person, let alone a young person, who has never seen and learned about someone with Down syndrome know that they look different?

I have spent hours looking at two pictures side by side in a text book.  One child had Downs, the other did not.  I could not figure out how to compare the two.  I did not have words to say, "This child's eyes are shaped like this, and this child's eyes are shaped like that."  And so on.

I don't know why, but I can't do it.  I can't depict the subtle differences, even though I know they exist.  Yet when I see the whole face of a person with Down syndrome, I know why they look different.

But I wasn't going to say all that to a four-year-old girl on the beach.

Instead, I internalized all the pain of what is to come in Braeden's life because I can't verbalize the differences, and I added a few layers to my wall.  I let someone's innocent curiosity pass through my over-protective mom filter and turn me into a greatly offended being instead of just seeing it for what it was.

I could no longer see over my wall.

I looked over at Brady P, whose face was still a silhouette.  I couldn't see enough of his features to compare them to hers to try to explain why his face looked "like that."

So I pretended his face looked like hers.

"Is his face messy?" I asked, about to erupt.

She thought for a moment.  And even though it may have not been messy from thimbleberries, she said, "Yes."

"Well," I sneered with a rubber neck, "Your face is messy too!"


I exploded.

Yeah, good job, Amanda.  You just told that four-year-old girl off for making fun of your son, even though she wasn't making fun of him, she was just curious.

I sat there fuming behind my giant wall.  The wall I just built to supposedly protect Brady P. and keep all my anger inside.

I felt heavy and disgusted.  I felt like this dark dragon with yellow eyes was flying around me -- between me and my wall.  I could barely even see Braeden anymore.  Not through the evil I just unleashed.

The girl walked away.

I failed.

Do you know why I failed?  Because that was the first time someone asked me about his appearance in an inquisitive way.  Sure, I've been asked, "Does he have Down syndrome?" and that is a simple answer.  Yes.  It doesn't require an explanation about something I can't explain.

So I sat with my anger right there on the sunny beach.

I had a couple choices.  I could sit with that guilt on my heart, a dragon circumnavigating my body and a wall taller than I could see, and feel sorry for myself and Brady P. because I didn't have the words and may never find them.

Or, I could forgive myself.  I could realize that it's okay, and just because I failed one test, doesn't mean I can't pass the rest.  I know where my shortcomings were in that moment.  I know how my own mind and heart filtered someone else's words, so I could let them hurt me.

She did not say those words to hurt me; I made them hurt myself.

After I bashed down that wall I put up in such a hurry, I was able to let the dust and rubble settle.  I could see it for what it was.  It was a prime opportunity for learning in its purest form about the subject I wholeheartedly want to share.

And I blew it.

But I will do better next time.  I can ask the curious person, whether they are four or forty years old, "What looks different to you?"

Then maybe we can both learn together.

Photo credit Steve Brimm

Here is a picture taken by my friend Steve at a wedding this spring. B-man looks all dapper, but his extra chromosome steals the spotlight.

Wednesday, August 22, 2018

"Big Waves"

It's August in the Harbor.  If you have ever visited or worked here during this month, you know it's a madhouse.  People come here to "get away," but in August they are here with everyone else trying to get away.  It's always been a paradox to me, but labeling it does no good. 

I just have to get away myself.

So last week, Brady P. and I went out to Hunter's Point.  We hadn't been there in a few weeks because, well, everyone else was there too!

But the Isle Royale Queen had just come back to the Harbor for the day, so I knew beach goers were waning.  And something inside me told me to go.

On our way to the shore from the parking lot, I tried to direct little man to the shore.  I always prefer if he travels on his own accord, even if it's heavily influenced by my words and direction.

We walked by a convertible with the top down, and the couple entering it exclaimed, "Big waves!" to Braeden to get him excited.  Then to me,  "Have you been down there?"

"Not today," I answered, knowing every day is different on the shore.

That day was more then different.

It was magical.

A peaceful looking man was seated in the boulders by the stairs, so we veered left a ways to give him some space.  There might have been a few rock hounds further down, but that I don't remember.

B and I sat down in the still warm, smooth rocks that comprise the beach.  The sun was to our left and slightly behind us -- about three hours before setting.  And the cliff-laiden shore stood wet and proud to our right.

Why was it wet?  The waves were coming in just right to smack those faces hard, delivering superior waterworks over 20 feet high.  They crashed with loud smacking sounds and sent droplets flying in a majestic way.

And we were seated between the sun and the splashes.  Do you know what happens in that perspective?

Rainbows, my friend.

Not only did we watch high smacking splashes, the droplets closest to the lake reflected rainbows.  Now, if you know me at all, you know that I love rainbows.  

I was instantly awed and humbled.  In disbelief.

Wow, wow, WOW!

The only thing that really captivated our attention away from this perfectly timed rainbow spectacle were the waves themselves.

The translucent aqua waves of Lake Superior rolled in at great heights like they often do on a fall day.  Except instead of watching lackluster waves that the gray autumn brings, they were illuminated by the sun, flaunting their turquoise hues.

As always, Brady P. was mesmerized by their rhythm, sound and ability to change as they broke over themselves.  (Okay, I'm not sure exactly what captivates him because he has never verbalized it.  This is just my guess.)

He stood there in his sweetly observant posture: standing up straight, hands clasped behind his back and eyes out to sea, following the next wave to arrive.  So still.  This pose alone is enough to show me that he has so much going on inside his brain and spirit.  I can tell he was awed and humbled like I was.

Then, all the sudden, one of those waves would come up a little further than any of the others had come before.  "Eeeek!" I would squeal as we both wondered if we're about to get licked.

Then we looked at each other and giggled hysterically.  We both loved every minute.

Brady P. didn't even throw many rocks that day.  The foaming waves absorbed any visible splashes, but we were also both so enthralled by the energy and beauty around us that we didn't have to make our own.  We were simply observers awed by Mother Nature.

Time stood still for that -- however long we were there.  And amongst the chaos of still August when I can't even get my van out of my driveway sometimes, I can reflect on that time that stood still in those great moments of beauty and connectedness... with the little boy who changed my life.

Wednesday, August 15, 2018


I will prelude this post with some news.  

The Rock Tossing Competition for the Brady P. Project is canceled for this year. Not necessarily canceled forever, but it's not going to happen this fall.  I don't see myself throwing it all together in a timely fashion.

Now, I really, really, really wanted to do this because I said I would and I think it's a great and wonderful cause that Brady P. and I are committed to: saving the world one heart at a time.

Every time I thought about bringing this event to fruition, I got overwhelmed.  I didn't know how to do it.  I couldn't make any decisions.  I didn't think I had enough time.  I felt like I was grasping at straws.

Then, last week, I finally made a decision.

To postpone it for the year.

It is not a priority for me right now.

Now, quite frankly, I "have the time" to do this if it was forefront on my list of things to manifest.  But it's not.  I have other deadlines, daily maintenance and desires that seem to keep trumping it.

So I realized that it is not a priority.

Please notice how I worded that: If I know I can make the time, but I have decided not to, it is not a priority.  

You can tell what your priorities are because you make them happen.  You keep them in the forefront of your mind each and every day of your life.  You are so passionate about them that they cannot possibly slip through the cracks.

That's how I wrote Digging for Light.  I was still a full-time mom raising Brady P. when he was almost three.  I still had a house to take care of, food to cook, appointments to make, people to see, etcetera.  

But I brought out my computer during almost every single nap time to draft, edit and revise.  I wrote after I put him to bed at night and I got up before he woke up to keep pushing that book forward because, well, it was that important.  My heart and soul would not have it any other way.

I started Copper Harbor Vitality, LLC at the same time, so I could sell all my books online.  I started The Brady P. Project at the same time, so I could have a way for people to chip in, so we can help save the world, learn how to accept people for who they are and respect and appreciate Mother Nature.  All while finishing that memoir.  With all that, I designed two websites, set up an online store and troubleshooted my way through my own shipping system, so I can ship directly from home.  And I started this blog.

Most of those tasks were new to me, but I could not be stopped.  I had to prevail because it meant that much to me.  

I didn't sleep much.  My body was not tired.  Four hours a night was plenty because my brain constantly whirred with ideas and plans.  My fingers constantly tapped the keys on my keyboard and marked my manuscript with red ink.  

That, my friend, that is how you know what your priorities are.  Your priorities are what you are doing.  Right now.  Each and every day until you can check it off your list.

Once it's checked off (some things may never be), you can take a break or find a new one.

Priorities change.

I want to give you this example of how they have changed for me, so you can relate it to your own life.

Last fall, when I was working myself to the bone to accomplish my goals, I didn't let anything slow me down.  I didn't hang out with my friends because I was too busy.  I didn't enjoy much time outside because I was too busy.  I didn't spend any time with my then husband because I was too busy (but so was he).  

I gave just enough time to help Brady P. live and flourish.  When he slept, it was my time.  And I used it all on my goals.

Well, check, check and check.  (Except for the Rock Tossing Competition... but this is a different summer.)

And I am a different person.

I have three, mind you, three books to work on right now.  Touring the Tip needs to be revised, I got prospected to write one about Michigan bike trails, breweries and historic sites and I want to write one about how to listen to and follow your heart.

If this was last year, they would all be done.  But none of them are started.

Do you want to know why?

My priorities are different.

At first, I felt guilty.  I felt lazy.  I thought something was wrong with me this summer.  But nothing is wrong.  I am in a different place.

This is the most beautiful summer weather-wise that I have ever experienced in the Keweenaw.  I mean, it's actually summer!

I have been tending my garden wholeheartedly.  I have been riding my mountain bike each week (more than I have in years) because I am now teaching others how to do it effectively and it's important for me to stay in shape, up on my skills and improving myself.  I am socializing with my friends in a very meaningful way because -- how can I reach other people if I don't give them my time?  And I am, of course, enjoying the sunshine with my little love dove.  

We throw rocks, eat berries, run down the road, wave to all the people, practice headstands, dance in the bubbles, eat ice cream and so on.

I figure, in another month or two, most of the above two paragraphs will be impossible, so we will get it while we can.  And as the nights begin to cool off, I can already feel a little twinge of prodding to get back on the book writing train.

When that happens, my priorities will be different.

And that will be perfect.

Thursday, August 9, 2018

Signing at the Laughing Loon!

I would be cheating you out of valuable knowledge if I didn't inform you that I will be signing books at The Laughing Loon in Copper Harbor on Saturday, August 11th from 1-4pm.  

Maybe I will see you there!

Wednesday, August 8, 2018

Big Spirit, Little Body


So this is actually what I wanted to write about last week before it morphed into, well, what it turned into.

Braeden has this presence.

Where ever we go. 

He walks into a waiting room or a restaurant or the store like he owns the place.    He nonchalantly waves hi and makes sure everyone waves back.  He acts like every person in there already knows and loves him.  Which is ironic because, whether the people in those places know him or not, they feel his spirit.  It is exuberant to the point that his presence takes over people’s hearts – whether they are aware of it at the time or not.  

They are captivated.  To the core.

They are suddenly overwhelmed by a satisfaction, peace and joy that was not there before that soft, yet genuine little voice waved “hi.”

I usually hear people, whether we know them or not, comment about him.  Whether they think he is cute or precious or beautiful or extra special, they will comment.  It fills my heart, as that is confirmation on my suspicions about how he reaches people just by being himself.

Just this past weekend I had encounters with a couple of my  blog readers.  People I don’t know, but people that feel they know us because, well, I just put it all out there, you know?

But they are also people who have been deeply touched by my writing and Brady P's charm.  That is incredible to me because that combination is what is going to help save the world.  With the sweet note I got and the big hug Braeden got from two complete "strangers," I can see that it's already working.

That is big.  Because Braeden's spirit is big.  It is huge.

Even when it's just the two of us home together, I can feel his presence vastly.  It seems to fill the room and bust out of the walls.  It fills my being and has already changed me from the moment we first locked eyes.

So here is the ironic part. 

I feel my house exploding with Brady P-ness.  Like he is this incredible super hero with his own gravitational force and moons.  And when I turn to look at him, to see the actual amount of mass he takes up on this planet, I am most often astounded.

He is so little.  

He is physically so small.  He wears size 18 month pants.  He weighs roughly 26 pounds.  I can palm his noggin like a  grapefruit.  His fingers look like little nubbins sometimes.

He has an undeniably tiny body.

And I don't know why, but I am surprised each time I realize how small he is because it is such a contrast from his impact in this world.  

It almost seems impossible.

But there he is.  Just a little nugget, changing the world with one hug, one smile and one little "hi" at a time.

Practicing his headstand...
Upside-down and tiny

Wednesday, August 1, 2018

Developmental Plan

Kids are little, right?

They start out tiny and then grow up so fast.  They plow through an assortment of sizes in one year.  Their bodies grow and their minds expand.

Adults pretty much stay the same size.  We have our trusty shoe size that most likely won't change once it is perfected.  I rarely even try on shoes anymore.  Size 8?  Throw them in the cart.  Our heads and hands stay the same size too.  Sure, our waistlines may fluctuate, and our height might shrink as gravity settles our old bones, but once we are adults, we are adults.

And we are adults for most of our lives, if we live a long life.

So I am preparing Braeden to be an adult.

Ever since we got out of medical emergency mode, and I was able to take a step back and feel more like a "normal" mom, I realized that I had a growing, developing person on my hands.  And that growth and development was, well, in my hands.  

It was my duty to give him the tools to help him become the most amazing person he can be.  I know I say that often, but I'm going to put a spin on it for you.  

I didn't realize, until a few months ago, how my mind motivated me to do this.  Even though Brady P. has spent most of his developmental life being compared on charts to "normal" kids and other kids with Down syndrome, I choose not to pay attention.  It's all irrelevant.  Because the goal is not to make him fit in the box of the moment.

It's to get him to adulthood -- where, as we have just seen -- is where he will be for most of his life.

So Braeden excels in some areas: numbers, letters, shapes, animals, reading, colors, etc.  Those academic basics.  He is a genius.  Does that mean I should slow down teaching him in these areas because he is smarter than some normal kids his age?  Hello no.  We will keep going because he is hungry to learn.

He is behind in some areas: speaking, fine motor, dressing himself, potty training, etc.  Does that mean that I am a terrible mother and he will never learn those things?  Hell no.  I am paying attention to when he expresses interest and skills in these areas, so we can move forward and thrive instead of  drowning in frustration and disappointment.

He gives me the cues, and I follow.  Then I lead with my own ideas.

After all, he has years and years before he is an adult.  We have time for all those things.  Braeden is teaching me how to teach him at the level he is at, which comes in handy when I teach people other things.

Wow.  I didn't plan to write about this next thing, but I just had an epiphany.

So I have started teaching mountain bike fundamentals.  Mostly to women, but I've given tips to men as well.

Here is what I've noticed when I am progressing a group of bikers: I always, always, ALWAYS take them from where they are at.  Sometimes I have a woman who wants to fly over some jumps, and sometimes I have a woman who is afraid to get a tire off the ground -- in the same group.  

And they all want to learn and get better.

Being Braeden's mom has taught me how to watch for cues on when these women (or any person in my life, really) is ready for the next step.  Because there are two big things going on here.  One is that, in order to keep progressing, we need to keep moving forward and challenging ourselves.  The second is that we can't take too big of a leap before we are ready.  The nagging fears and lack of skills will end it in disaster -- in the mountain biking case, a broken collar bone or gushing wound (things I have so far not had to encounter).

In Brady P's case, extreme frustration and shutting down.

We cannot learn if we are shut down.

So we take the next step when we are ready.

That is how I've been doing it with that little man.  So what if he's behind in this and ahead in that?  He is himself.  And he is awesome.  We are moving forward as his interests and skills allow, and we will be perfectly on time for when he is an adult.

Because then, he will be in charge of teaching himself.

So just for a treat, here is a video taken by the amazing Lindsey Richter at coaches play time in the skills park before last weekend's Womens Weekend.  And yes, that was me at the end.  Not my best trick, but caught on film!

Copper Harbor Women's Weekend coaches