The Natural Life

Last week we traveled every day from Wednesday to Sunday.

To and around cities.

Cities.

I get a knot in my stomach just thinking about them.

But all of Braeden's urology appointments were set up at the children's hospital in Ann Arbor (the best hospital we've ever been to), so we prepared.

I even convinced my mom who, surprisingly didn't need convincing, to take the ferry boat from Milwaukee, Wisconsin across Lake Michigan to Muskegon, Michigan.

While this option didn't necessarily save us time vs. driving around Chicago, it saved me the desire to jump out of the window of the car as it navigated 80 mph around a city full of hundreds of thousands of aggressive drivers.

I hate it.  It does not seem normal to me.  Yet, to some people, it's daily life.

To each their own.

Luckily, we signed up for the ferry.  

While waiting for the freshly arrived boat to unload, Braeden and I played out in the lush Milwaukee grass.  The sun was shining, and we donned only one jacket -- no hats and mittens -- as we had to do in the cold, rainy/snowy mix, gray Keweenaw.

Sometimes it's good to get away.

So we played in the grass.  And when I say played, I mean, Brady P. practiced his dives and rolls.  Laughing and smiling while the drying grass clippings stuck to his Copper Harbor sweatshirt.

It felt very liberating to us both.

I felt proud.

Little Brady P., who had already hugged all the kids his size inside the building, was now enjoying his time in the sunshine to the max.  Running in circles around the lone tree in the yard.  Diving and rolling and laughing.

I'm glad he gets a thrill out of nature.

Cuz I knew we'd be on that boat for almost three hours... and the car for three hours on each side of that.

He loved being on the boat.  So much that he stayed curious the whole time, even though it was his nap time.  He perched in the window to watch the sparkling waves.  I'm sure it reminded him of Lake Superior.

Perched

I'm really glad we spent that time outside because that was pretty much the only outdoor time we got.  The weather was up and down, but were often in the car... or the hospital... or in the concrete jungle... not rolling in the grass... or throwing rocks.

At the hospital, however Brady P. checked out with a positive outcome.  And we were told to come back in a year.  "Unless," his doctor said, "you want to skip this extremely long trip and get his next ultrasound done in Marquette.  Then we could just have a phone appointment."

Yes, doctor.  Yes.  We would prefer to skip that trip.

Picture # 4 by Super Man

As luck (and my mood) would have it, the ferry was cancelled on our way home, and we had to drive around Lake Michigan anyway.  But for that, my mom and I compromised, and we took the long way home in order to keep stress levels low, so this Yooper wouldn't jump out of the car. 

Those Eyes

Just look at those eyes.

In his element

Those little, almond eyes plunked right in the middle of that beautiful, muddy face.

I now know what lies behind those eyes.

Heart.  

Soul.  

Joy.  

Love.  

Gratitude.

Compassion.

Acceptance.

And a longing for acceptance and love in order to feel whole.

Before Braeden came into my life, I would see those eyes on any person with Down syndrome and look away.

Those eyes were not right to me.

Something was wrong with them.

They were too little.  There was nothing meaningful behind them, I thought.  

I was stopping right at the physical "face value" of them, and turning away, my heart hardening more each time.

But now I see those eyes in a whole different way.  I know that they look smaller from the outside.  I understand that that is a test for the onlooker.

Because, in order to feel the magnitude of love behind them, is to cast judgement aside, and look into them.

Not at them.

Into them fully.

And see the soul of a magnificent individual.  See the soul of all souls.  

See myself for who I am.

Before I was scared to see who I really was.  That was why I always looked away.

But I can't look away from my own son.  I am forced to learn.

Now I purposely dive into those eyes in order to scour my own heart for any other impurities.  

Brady P. shows me who I really am.  He shows everyone who they really are, if they look.

Through his wise, little eyes.

Thank you, Brady P.  We love you.

And happy birthday, you little 4-year-old!

"Key"romosome to Life

For the last four years, I've been watching videos about people with down syndrome.  They often come into my Facebook news feed and people send them to me in messages and emails because, well, they're relevant.

They are also inspiring.

Now, of course, it's media, and people can broadcast whatever they want to make things seems just they way they want them too seem.  

But there are some things you can't sugar coat.  Somethings you can't fake.  And most definitely, feelings that you can't make up.

I've shared some of these videos with you already, but here is one for this week that has crossed my path a couple times lately.

I love this little girl's spirit.  And confidence.  And her ability to be her own advocate.  It makes me so proud of her, and I don't even know her!

In a way, however, I do know her -- because I know Braeden. And I have a feeling he will be his own advocate too.

Sofia's message

As for me, I'm trying to advocate for everyone.  I believe that we all have a beautiful purpose, and once we are not influenced by greed and illusions of reality, we can let it shine.

Our friends with Down syndrome will be able to help us see this path because they are such a pure and vibrant life force.  They hold the key to how we can learn to do our part in this world.

All we have to do is watch, listen and learn.

Brady P. Sings the Alphabet

I'll spare you the chit chat today.

Brady kept singing the alphabet, so I recorded it for you.  When he got to "g" he smacked me because I was mouthing along.  But, jeez, Mom, he can do it himself!

CLICK HERE TO WATCH THE ALPHABET VIDEO!

A Little Extra

As a mother of a child with Down syndrome, I often feel like we (all the people involved in this little man's life) are a minority.  Most people do not experience the same repetitive challenges, moments of pride or depth of love that our family endures on a daily basis.

Before I go more into that, let me say that I am grateful for this unique adventure.

I sometimes feel a bit separated from other people because they might not know how to talk to us or even want to engage with us because Braeden is different.

But discomfort provokes a need for change.

And these changes have induced strength and purpose in myself and everyone else who loves him.

I know Brady P. won't just get by in a regular school with regular classes and regular friends without any extra effort.  His education would take a huge hit.  

Same with his medical life.  He doesn't just get by with the annual well-child appointment.  He has seen specialists from soon after his time of birth and will continue to all his life.  And the normal "cold" for him can turn into a panic attack as he struggles for a breath through his abnormally small passageways.

So, as his mother, I have to be proactive.  I do research.  I make phone calls.  I attend meetings.  I join groups.  I take him to therapy appointments.  And then I take the tools I have earned and use them the best I can to build an enriching life for Braeden.

It takes a staggering amount of time and energy.

But as a middle-aged white woman, I wouldn't know what it's like to be a minority if I didn't have Braeden. It is humbling, yet empowering to have this extra work placed upon me.  And I feel like I have more of a voice because we have different needs.  The spotlight mysteriously shines in our direction.

But we are not just different, we are extra.

Brady P. has an extra chromosome.  I know I've said this before, but it makes him more and not less.  I've written about how his hugs make people's day.  I've written about how his sweet little voice saying someone's name melts their heart.  I've written about how looking into his eyes shows you the depths of the universe.

That, my friend, is all extra.

So what can a person do when they feel like most people don't understand them?  Get with the other people in their minority group!

That's what we did last Saturday.  Grammy Linda, Brady P. and I went to the Mine Shaft bowling alley for the annual back to school party put on by the U.P. Down Syndrome Association.

I love that group.

Every person who goes to those events is extra.  The spotlight kids have an extra chromosome which exudes extra light.  Their siblings show extra love and learn extra patience.  The parents are extra real, extra supportive, extra understanding and just down right extra cool.

Watching his ball roll down the lane

I cannot express how much it means to me to be in a group of people who have all been humbled, yet empowered by the child that blessed their lives.  

I don't think anyone who truly loves, cares for and advocates for a person with Down syndrome could even fathom putting on a facade for the sake of popularity.  Because that special person in their life has taught them that it doesn't matter.

It doesn't matter at all.

It's what's inside that counts.  It's how we affect others that matters.

And Brady P. continues to teach me and all the people in his life that.  We are all able to see a more meaningful side to life, which humbles our ego.  Yet, at the same time, a true knowing of what is important in this life is then able to rise from within -- and that is the strength and purpose we find.

I am fortunate to experience this on a daily basis.  And I am grateful through and through.  And, as a writer, I am moved to share it with everyone who does not experience it first hand... and I hope that the world will be able to see it with a little extra light.

Nothing to See Here!

This blog will resume next week.  Thanks for your patience!

Leading From the Heart

I started this week's post by typing a pep talk to myself in hopes that inspiration would strike for today's topic.  Once I wrote the next five words, I had it figured out:

"Just write what you feel."

Zap!  It hit me like a lightening bolt.  The rest flew tirelessly.

What you feel is right.

Because feelings come from inside.  They come from the heart.  They are real desires of the spirit.

If I wrote what I thought I should, I would be guided by society's expectations of me.  Enough people do that.  I don't want to do it too.  It does not inspire me.  It does not seem real.

I have spent the last year undergoing a transformation in my life.  I didn't take any mystical classes.  I didn't read any specific authors religiously.  I didn't get advice from a counselor.

I simply started feeling.

I started listening to my heart.

At first, I doubted my heart a lot.  Because my heart didn't always make sense.  It didn't conform to the norms of civilization.  It wanted me to do things that seemed idiotic to other people.  Even to me.  Prompting me to make big, difficult decisions and stick with them.  

But I felt I had to make them.

Otherwise I couldn't eat.  

That is how strong my heart, my soul, my purpose was crying out to me.  To think (notice the word think, and not feel) that I could go back to the easy, more acceptable way of living made me nauseous.  I lost 14 pounds last fall because my heart and mind were in such a battle.

Luckily, my heart won.

And here I am, continuing to share its ever-beating glory with you.

You might think I am crazy, but that's okay.  Last year, I would have thought this was crazy talk too.  But once I started feeling, I embraced the beautiful changes that were happening in my life.  That were happening around me.  That were happening to Braeden as he sensed my peace.

And the latter was enough to confirm that I was on the right track.  Okay, that and the fact that I could eat solid food again.

It should come as no surprise that Brady P. is a feeler.  He acts from his heart.  Well, he is at the egocentric stage of development right now, but overall, that is how he operates.   And once he entered my life, he emanated that.  I had no choice but to follow his lead or I would be ignoring the greatest gift I had ever been given.

The gift of a teacher of love.  The gift of a son who is basically cognitively unable to conform to the norms of society.  Even as he ages, a more selfish, inhibited, even cold way of life will not be able to route into his neurological pathways.

That extra chromosome is a gift.  It keeps him true to himself.  And in turn, he is true to others. 

I want to share this video with you.  I hope you watch it because it illustrates my point so beautifully, and the star of it is a man with Down syndrome.  The first person with Downs to own his own restaurant, in fact.  

Not just any restaurant, but the friendliest restaurant.  Ever.  Because the owner, Tim, greeted every person who entered, whether he knew them or not.  And gave people hugs, as warm as Brady P. does.  He pursued his dreams by following his heart and changed his path when something pulled his heart into a different direction.

I challenge you not to cry while watching.  I can't personally not cry, but the subject is certainly dear to me.

CLICK HERE TO WATCH!

As the old saying goes, "You can't stop love!"  Especially in someone who leads with their heart.

Preschool Days

Short and sweet today. 

Just like Brady P.

He started preschool this week.  What a little man.  And I wasn't going to do the obligatory preschool picture, but I caught him in a few candid moments as we left on the first day.  

That is the one room school house in the background.

Enjoy the sparkle in his eyes.

Down the steps like a big boy

He's got that swagger

My handsome little man

See you next week!

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!"

***KABLOOM!***  

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.

"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.

Priorities

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.