The Smell that Changed the Day

I read something lately about making your first thoughts of the morning positive and full of good intentions in order to have a mindset that is conducive for a happy, productive day.  

We've all heard that, I'm sure, but Tuesday, when my alarm went off at 6:45am, and I awoke from a dream to the darkness of the morning, I tried extra hard.

I get to see my sweet man today!  I get to take my van to get fixed, and it's a nice day to drive!  I have lots of work to do for the Copper Harbor website revamp!  I feel good, and I'm going to have a great day!  Time to get Brady P. up for school!  I wonder what silly greeting he'll have for me this morning...

My thoughts and intentions were set.  I was feeling great.

Then I opened the door to Braeden's room.

I was instantly slapped in the face with a terrible odor.  An odor nobody should ever have to smell... or sleep in... as Brady P. did.

"Hey, Braeden..." I uttered.  "Did you puke?"

"Yes," he said in the darkness.

He often says yes to questions he doesn't understand, so I wasn't sure if he knew what I was asking at the time.

"I'm going to turn on your light, okay?  Cover your eyes."

"Yes," he said.

I surveyed the scene around him and wondered how long he had been laying in his own vomit (sorry, this might be kind of gross, if you're eating or not a parent).

"Braeden, did you puke?" I asked again after not seeing any big puddles or chunks, but definitely trying not to do the same thing myself.

"Yes," he said.  He held his sea turtle out to me and pointed to a white ring around his shell.  Yup.  He knew what my question meant!

"Oh, sweetie!"  I lamented.  "Do you feel okay?"

"No!" he said.

"Do you want to go to school today?"

"No!" he wined and began to squirm as another bout of curdled food began to wretch from his guts.

I'll spare you the rest of the details of that moment because that is not my point.  Here's my point.  Well, the first one.

Just as I was feeling good and purposeful and ready for the day, I got a whiff of a sick little boy, and my personal goals went down the tubes.  Everything changed in an instant.

But I had to roll with it.

In between cleaning and changing a little boy and holding him upright while he went into another round of liquid expulsion, I had to call and text a few people to cancel my plans for myself and for him at school.

Whew.  I got everyone notified.  I got the boy cleaned up.  He seemed stable for a moment, so we snuggled in my bed until he woke up... in another bout.

Oy!

But this time, and the couple times after he was done sharing the juice he swallowed, he went from a hot squirrelly mess to looking at me with gratitude and saying "all done."

"You're all done vomiting?" I asked in disbelief.  I mean, how does a little kid know that it's over for now?

"Yup!" he answered and ran off to play as fast as I could catch him to wipe him up and change his clothes.  Again.

Here's my second point.  That kid is tough as nails.  I mean, wow.  

He's sick from some bug that we couldn't really figure out yet, goes into these awful bouts of purging, then goes about the rest of the day like business as usual. 

Sure, he didn't really eat a whole lot and he got tired for bed earlier than usual, but we still danced to the Beach Boys, jumped on his trampoline, did puzzles, watched a couple videos on the computer, read books, took a bath, etc.

Snuggling warm and dry after bath number one

Business as usual.

Just some wrenching and lots of laundry in between.

Well, rest assured he is much better today.  Day two missed of school in a row, but I wasn't chancing the teachers having to clean that up!

We made it through.  It's just life.  Life that we have to carry with a positive attitude in order to make sure things go as smoothly as possible.

That's just what we did.  Thanks to everyone who wished him well and called with concern.  And thanks to Craig for coming to help and snuggling with us.

Here's to another wonderful, productive day... no matter how life makes you follow your nose!

Whoops!

Oops!  Another Wednesday has come and gone. 

I'll catch you next week!

Halloween

Brady P. has been into Halloween for a while now.  

Like, ten months.

So imagine how much he liked it when the Halloween holiday came around!

I'll let him tell you about it.

***

Hi.  This is Braeden.

I really like Halloween.  My mom and I started listening to Halloween videos on Bounce Patrol a long time ago, and we did the Halloween Stomp every morning.  She was really good at it, and I liked to watch her moves.

I learned about werewolves, spiders, witches, zombies, ghosts, pumpkins, skeletons, mummies, vampires and other scary creatures.  Boo!

Every time I got to watch computer, I would pick a Halloween video.  I probably watch 100 Halloween videos or more.

I got really good at pretending to be Halloween guys.  First the zombie.  Then I learned the ghost by finding one of mom's towels and putting it over my head and shouting boo!  I do a good mummy too.  It's kind of like a zombie, though because I put my arms out in front of me, walk slow and groan.  I can even be a vampire when I put my arm over my mouth like it's my cape.

Finally, it started to really be Halloween time.  I could tell because that's what we did at school, and mom put up decorations around the house.  My favorite was the spider.  It was really big like a tarantula and I wanted to see it, but if she moved it toward me, I got really scared.  One time it even made my heart hurt.  It scared mommy a couple times too.

Then one day she asked me what I wanted to be for Halloween.  She thought I was going to pick a zombie because I was so good at pretending to be a zombie, but I picked a ghost, and made her be a zombie!

When she came to my school Halloween party, she was a zombie really good!  Some of the kids were scared, but I knew it was her, and she pretended to be a zombie so good, I was really proud of her.

She scared the kids, but I scared her because even zombies are afraid of ghosts!

Me and mom at school being scary

Later we went trick-or-treating on the bus.  The bus was way more full than when I go to school in the morning.  It was really loud too.  All the kids were dressed up and the parents were loud.  I got to eat a bunch chocolate.  I love chocolate. 

When we stopped and got off the bus, I carried my pumpkin bucket and said "hi"  and "boo" to the people, and they gave me candy.  I like that idea!

It was pretty fun, but I was tired and it was loud.

Now Halloween is over and I pretend to be a dinosaur.  I am really good at it.  You should hear my roar.  I am good at stomping too.  I also like to watch dinosaur videos when it's computer time.

Okay, bye!

A Hodgepodge

Happy Wednesday!

What's up for today?  

A hodgepodge.

I shared this on Facebook today.  I've been seeing these facts  -- one for each day of October -- on a friend's timeline who also has a son with Down syndrome.  This one just hit me enough to share.

It's so true for me.  But I can also see how it has affected the rest of Brady P's family, his friends, his classmates and our community.

His extra chromosome brings that acceptance and love we are trying to share with the world.

Brady P. and I have been taking walks around town in the sunshine.  I just laugh because he takes the same route each time unless I can convince (or trick) him into going a different way.

A creature of habit to the max, I tell ya.

Looking through Third Street Dock

Tomorrow is Halloween.  The kids have a party at school, then Trick-or-Treating ensues in the evening.  I'm excited about it!

Wee Man picked our costumes this year.  He is going to be a ghost, however, he doesn't like wearing his costume... and I am supposed to be a zombie.  When I cut up my clothes for my costume, tried them on and walked out of my room like a zombie to see Braeden, he shook his head and said "no!" and ran to the front door.  Trapped.

So I had to turn back into mom and ask if he liked my costume.  "Yes!" he said.

We should have some pics of being all dressed up for next time.

And now we'll end it with a video that I cropped a bit too much.  Sorry.  

It starts with me saying "Johnny Johnny," but I think there's only one Johnny in there.  

I'm so proud of how he is coming along with his words.  We will often reverse roles on the parts.  He can do them both.  And if there is a crowd, he recites it with arm motions and expression so grand that you'd think he was reenacting a Shakespeare play!

Get it, boyeee!

The Meaning of Life

October is Down syndrome awareness month.

If you would like to read some run-of-the-mill facts about it, please click here.

If you would like to read my personal, in-depth experience as I learned about Down syndrome from Brady P, you can purchase a copy of my memoir, Digging for Light, here. (Use coupon code "friends" to save 30% on all items.  All orders over $20 ship for free!).

But this is not a commercial, and I am not just trying to promote awareness about Down syndrome.

I am writing to you, right now, to promote love and acceptance for EVERY SINGLE PERSON ON THIS PLANET!!!

Yes, people with Down syndrome are extraordinary.  I've learned so much from my son that I would never trade my life before him (or life with an "ordinary" child) for my life now.

But do you know who else has great qualities?

You.

Your best friend.  The people in your family, even if you don't like them.  The lady with funny glasses who walks through the cafeteria humming the same song everyday.  People with skin of a different color who live across the globe.  The guy driving the taxi cab who almost hit you this morning.  The kids at the school near you.  

Every single person on this planet has something good in them.  Something worth nurturing because growing the good is better than growing the bad.  And what we focus on is what we get.  

Period.

Everybody is different, but everybody has a gift to share.

It's easy to see the good in people you already love.  Not the people you might say you "hate."  Hate is a strong word.  Even though I have had some horrifying experiences with other people in the last couple years, I can still say that I don't "hate" the people who treated me that way.  I don't even wish them ill will.  I actually wish them the best!  Because, dag nabbit, there is something good in them, or I never would have gotten involved in the fist place!

Don't think I am an instant angel.  It took time, forgiveness,  meditation, prayers, lots of journaling and buckets of tears to get to the point where I can honestly say that I wish those people the best.  I just choose not to be around them.  We have gone our separate ways, and I can breathe fully.

Ahhhhhhhhhhhh.

Okay.  Your turn!

Think of someone you feel an extreme dislike towards.  

• Maybe they harmed you or your family.  That is unacceptable, but not a reason to hate them.  They probably had a rough upbringing that they never got over, so they took it out on innocent people.  It happens all the time.  I'm not trying to minimize any hurt that you feel, but taking back your power and realizing that you are no longer a victim is going to help move things forward.  I did it, too.

• Maybe the person you dislike has a position over you at work or in society, and they are always putting you down.  That is also unacceptable behavior.  So why would they do that?  (You can call them names, but then you are using the same tactic as they are.)  They are in a delusional position of authority which makes them think it's normal to feel separate from you or better than you.  Somewhere they lost the importance of respect.  That is not okay.  You should never let someone treat you as less than the amazing person you are.  How would you fix it?  Tell them!  Tell them you do not feel respected (and chances are that most other people around you feel the same way, so use that to your advantage!).  And do it with respect to show them what is possible.  If you lose your job/position because of it, then good.  That gives you a chance to start over some place you are respected and appreciated.  Your whole life will improve.  I did this, too!

• Maybe you don't even personally know the person in real life.  Perhaps you only see them on TV or the news.  Well, then, how can you really hate them???  You don't even know them!  Yes, they might make selfish decisions and say horrible things about other people, but why do they do that?  How do they really feel about themself?  Is it all for show?  To pretend they're in control?  Lack of their own self-esteem?  What childhood scars do they need to work through?  Perhaps they should do work on themself before they try to be a leader or a role model.  I completely agree with that.  But does hating them help?  No!

Right now you either think I'm a wacko or that I have a really big, squishy heart.  I'll let you decide.  Either way, that doesn't change how I feel about you.

I will still send you love.

We all must send love.  

Let me just stand on top of the pulpit here and throw my fists in the air when I shout this:

WE HAVE TO LEARN HOW TO LOVE AND BE KIND TO EVERYBODY!!!

Look at this world!  How did we get into this mess???  

We divided ourselves into groups.  Us vs. them.  But that's not the truth.  We are all in this together.  If one part of the earth goes under, we all go under!  We are all on the same sphere floating and spinning through the galaxies!!!  How can we separate ourselves from that fact???

Doing that is our greatest flaw.  We simply have to change our mindset.

This will be easier for some people than others, but we have to try.  Not just everyday but in every moment.  It's a journey we all have to take, and it will take constant practice.  

Not only do we need to love an accept ourselves for who we are and where we're at, we need to grow.  We need to get through our own pain, so we can recognize other people's pain and show them compassion.  Then they can grow and recognize somebody else's pain and show them compassion and on and on and on until we are able to put our own egos aside and realize that we all want to be loved and accepted.

When we get down to brass tacks, what else is there?

We are made from love, my friend, and love will sustain us.  It is the only way we are going to save ourselves.

Now let me get off this soap box, and say, Happy Down Syndrome Awareness Month.  Because a little boy with Down syndrome taught me the meaning of life.

Brady P. says, "You're welcome!"

Birthday Boy!

So there's this cute little boy who just turned 5.

Five!!!

Yup.  We got ourselves a five year old.  And he is cool as heck.

So cool that his grandparents, dad and I threw him a big party and invited the whole town!

My main goal in inviting the whole town was to say thank you to this wonderful community for always supporting us.  Brady P. and I couldn't live here year-round if it wasn't for all the help we get from friends and neighbors.

So cheers to you!

Brady P. had a blast, and so did the other kids who came!  Between the score-keeping arcade basketball shooting game, dance ribbons at the top of the stairs, balloons, bubbles amongst the snowflakes, apple pressing in the park and cake and ice cream, I never heard one kid say they were bored.

Score!

And Braeden got lots of presents.  People sure love him!  Here is a picture of his typical face when he opened them.  What a ham!

Animals!!!

Well, back to life as we know it.  Now I just have to reorganize all the toys in this place!

We are truly blessed.  In all the ways.

Have a wonderful night!

A Skipper

It looks like I will have to skip this week. 

But here is a picture of the leaves in Brockway Mountain valley!  There is still time to come up and gaze upon the fall splendor.  It's amazing right now!

Family Expansion Pack

I'm going to get a little personal here.  

A little sappy even.  

I cried a few times when I wrote this one.  Perhaps we really have to feel our wounds in order to find deep gratitude.

I am grateful for my family.

Whether you know Brady P. and me personally, have been following our journey for years or are just joining, let me explain something about our family.

Aaron (Braeden's dad) and I separated two years ago.  Wow.  It's been two years?  We did the divorce and the whole thing.  

Brady P. lives with me pretty much full time.  He hangs out with his dad on weekends in the summertime while Aaron is  in Copper Harbor.  In the winter, they get to see each other during holidays, when weather travel permits or when we go for our annual Arkansas visit.

I just spoke about three people.  Only three.  Aaron, Braeden and me.

But our family is bigger than that.  And when people get divorced, it's like the families get divorced.  I can honestly say that I love the people in Aaron's family.  The Rogers side and the Zimmer side.  They are wonderful people, and we have had so much fun together!

I haven't seen most of them for that two years, and I miss them a lot.  Luckily, Brady P. gets to be a part of their family, so they can watch him grow up, and he can melt their hearts.

One of these days, I hope to show up at their Thanksgiving, though, because we always have a grand time!

Now here are the parts that I am really, truly grateful for.  With every cell of my being.

• Aaron and I are very civil with each other.
• Aaron's mom is still one of my very bestest friends!!!
• My parents and Aaron's parents still enjoy spending time together.
• Aaron's fiancé and I get along really well!
• Brady P. gets to watch us all share love and friendship.

Braeden with both Grammies!

Doesn't that make your heart smile?  It does mine!

I am so grateful for the little boy who came into our lives, full of unconditional love, to show us what really is important in this life.  We are all better because of it.

And do you want to know a beautiful thing?  Brady P. gets to be a big brother!!!

I am so excited that he gets to have a sibling!  I always wanted him to be a big brother, but I certainly didn't want it to come from me.  I'm so over it!

So, congratulations and thank you to Aaron and Kelsi for making Braeden into a big brother (coming this winter!).  Brady P. and Kelsi both think it's a girl.  I love it when Braeden says, "sister," when I ask him who's in Kelsi's belly.  

That little sister is a HUGE gift to Braeden.  I cried for a solid hour after I found out.  He deserves it so much!

Not only is this family, ever-expanding as it will be, always there for us when we need them and supportive in the ways they know how to be best, they still love and respect each other.

That is a gift as wonderful as a little sister.

Thank you to all my family, near and far.  You have helped to make us who we are.

Bribery

Brady P. is in kindergarten.  What comes with legitimate school enrollment?

Homework.

Luckily, we worked in his book all summer, so he is used to sitting down with me, his pencil and some pages to mark.

He even kind of enjoys his homework, but maybe that's because I started offering him a reward after he does it all.

Yesterday afternoon was hot, so I promised him ice cream.  It totally worked!

The latest homework was a math pretest.  Man, he is so smart. I believe he really understands what's going on when an adult asks him to solve the problems and count and so on. He struggles with making the correct symbols, but at least he puts the pencil to the paper, can make a line in the correct direction and can make a circle.

So I guided him through the pretest (the test is today!), and he paid attention for the most part.  But when he didn't, I asked him, "Braeden, do you want ice cream?"

"Yeah!" he chirped.

"Then please count these balloons."  Or please do whatever the next question asks for.  You get it.  It's total bribery.

Is that wrong?

Well, he did three pages of homework, and then we went out for ice cream as a reward and not just a treat he may otherwise take for granted.  So, no.  I don't think so.

Kids need to feel a little motivation to get through things they don't necessarily want to do.  Heck, even adults do!

Do you reward yourself for getting through hard projects or tasks?  This world is full of them, and sometimes it's nice to know there is a light at the end of the tunnel (for lack of a better cliche).

I don't always reward myself for getting through the day, but I am fortunate to get to do mostly things I like throughout the day.  I choose them.

Even cleaning!  I spent most of the morning deep cleaning and reorganizing my house starting in one corner and working on because I just had a good deep cleaning of my heart and soul.  Now my house needs to match! 

But then, for me, the reward is the Feng shui-ness of an organized and functional home.

Here is a picture of my progress today so far.

Just kidding!  That's so boring for you!

Here is a picture of Brady P. eating ice cream at the general store on the bench because that is a habit he will not give up.  If we get ice cream, we HAVE to eat it on the bench.  

Ice cream face commences!

Enjoy your day!  And if nothing else, give yourself a pat on the back and say, "Nice job, me!  I made it through another day!"

Ummm, Smile?

An interesting thing about little kids who are learning to talk (well, at least Brady P; he's the only one I've thoroughly observed.) is that they don't always know what shape their mouth makes while they are trying to produce a sound.

For instance, when I ask him to say "ooooo," he spreads the sides of his mouth out instead of pushing them together like an O.  We've tried a mirror and diligent repetition,  but I think it will just take some time.  I've seen him make an O shape with his mouth more lately, even if he doesn't match it with his sound quite yet.

Here's another goofy thing kids do when they can't see their mouth.

Smile terribly when you ask them to smile.

They can be jovial and laughing, but the moment you ask them to smile, it's like they suddenly use their brain and concoct an abnormal facial expression that somehow feels like a smile.

But it's not.

"Smile, Braeden!" the photographer told him on school picture day this week.

I've seen his smile face before, and it's really not becoming.  But somehow, that mouth posture transformed to something slightly hideous, yet comical.

Here's a photo from picture day that the photographer  recommended we do over.  I agree!

Not a framer!

And his morning aid thought it was funny, so she sent me a couple other pictures to show me that he still does it!

Smile!

Smile!

What a goon!

I'll have to show him that face in the mirror, and see how he reacts.  It's definitely not a smile.  It's upside down!

Well, I hope you at least got a real smile out of this.  He never ceases to crack us up!

Contrast

Ummmm, wow!

Thanks so much for all the encouragement, support and praise for little Brady P. and his team!  I still shed a couple tears when I read that last post, but it surprised me that other people did too.  

You're feelin' me.  I dig it.

Well, so far, so good at school.  It definitely takes a lot out of him, but that means he is putting a lot in.  Now it's just my job to deal with a wreck of a boy at the end of the day, and I can do that.  That's nothing new!

Because he (usually) wakes up the next morning ready to do it again.

I have not had a chance to talk extensively to the teacher or his aids about all the details of his day, but things should be a little less hectic for everyone soon enough, and hopefully we can share it with you.  If anything, parent/teacher conferences are in November.  I know they will come to me with any issues prior to that.

Soooo, do you want to know how I am doing?

Even if you don't, too bad.  Because it's my turn.

I am doing absolutely amazing!

I wake up, get him ready for school, buckle him on the bus, wave goodbye, then turn around and bounce up my front steps.  From there I can do whatever I want.

I mean ANYTHING!!!

Well, as long as I'm back by 2:30!

I can go back to sleep, I can meditate, I can clean my kitchen, I can write, I can do my art, I can visit friends, I can go to the garden, I can dance to MY songs, I can go out for an adventure.  Anything.

Yesterday, I went to town by myself.  Let me tell you what that means in comparison to going with wee man.

I got my list ready (it was a full day), my purse, water, coffee and snacks.  I did NOT pack a diaper bag, double check its contents, make sure he was sufficiently fed first, change a poopy diaper last minute, wonder how he was going to do on the hour drive there and back and all our stops in between.

The drive went smooth for me.  I meditated and processed life.  I did NOT have to keep saying, "Braeden, what do you need?  Sweetie, we are almost there!  No, I'm not playing animal songs right now, it's the radio.  Would you like another fruit strip?  Did you just throw your water?  Now you can't have a drink until we get there."

I went to all my shopping places, appointment and errands with just a purse in my hand.  I did however, notice every single other mom who had her kids with her (even a dad or two) and I felt a compassion for them that I hadn't known bef0re.  Because now I am on the other side.  Now I can see it -- I'm not swimming in it.  I did NOT have to calmly struggle to get his stiff, unyielding legs into a shopping cart, wonder if he was going to make it through the next place, sing him songs to soothe him through a store, buckle his rigid body in and out of the car seat a dozen times, stop for food when he was hungry or wonder when or if he was going to fall asleep on the way home.

So it was a peaceful trip.  

I missed him in places, of course, because he always says hi to people, and it is so stinkin' sweet.  But the freedom is unreal.  And I will get to do that each time, unless he has his own appointment.

Thank you, school.  For giving my little man a worthwhile place to be during the day, and giving me the freedom to sort my life out and start moving forward again.

Ahhhh, forward.

I am grateful!

Thanks for reading all my mumbo jumbo!  Here's a video that shows how tough this little man is.  Have a great week!

Kindergarten Strong

Most parents assume that their child(ren) will go to kindergarten when they turn five years old.  I mean, it's just a standard part of society, right?  It's the norm.  They don't think twice about it.  It's just what happens.

Well, for Brady P, that wasn't just going to happen on its own.  There was nobody, absolutely nobody telling me from the start, "Oh, your son has Down syndrome?  That's no problem for the educational system.  He'll just blend right in.  It'll be fine."

Nope, nobody.

Because it's true.

Everybody had to work hard:

• Braeden started learning more and more after his health improved around 5 months old after heart surgery.  
• He continued to hunger for the praise of finding the right letters, numbers, colors, shapes, etc before he was two years old.  
• He worked with therapists to progress in his ability to say letters and sounds.  
• Grammies, Grampies and Dad worked with him on all of their special talents.  
• I worked extensively with the Copper Country Intermediate School District and the Grant Township School District to set up what we might call "Special Education" in the one room schoolhouse.  *Ummmm, excuse me???  The one room schoolhouse right in Copper Harbor???  You bet your sweet behind!!!  We didn't even have to move to a bigger school system!!!*
• This summer, Braeden and I worked 4 days a week on holding a pencil, drawing letters and numbers and cutting with his special scissors because that was the biggest recommendation before he started kindergarten.

Yesterday.

Yup, little Brady P, almost 5 years old, is in kindergarten.  Right now.  Allowing me to write this weekly blog in a timely fashion, work on my career, work on my house, get out for adventures, make nutritious meals, go to town by myself and just plain feel like the door swung open on my mom cage.

Let me tell you a little bit about yesterday.

We both got up earlier than usual because the bus was due at 7:40 am.  Yup, the bus picks him up in the morning!!!

He seemed chipper, got ready for school, put on his backpack and I took a couple pictures of my little kindergartener.

Workin' it!

We got to our bus waiting spot, the bus came, I took another picture, buckled him in and kissed him on the head.  Then his dad went on and wished him well too.  Aaron and I both cried.  I high-fived him as the bus drove off.

Ready to jump on that bus!

Then I walked up to my door bawling.  I sat down on my couch and bawled.  I looked at his cute pictures from the morning and bawled some more.  I thought about all those bullet points that I just mentioned above and I bawled.  Tears well in my eyes as I type this now even!

I was so proud of that little boy.  He is so independent in his spirit.  He is so smart.  He tries so hard.  He loves to feel like one of the kids, and the kids just love him.  Yes, he is extra work (just ask his aids at school!), but he is so worth it.

At his very own desk!

He came home yesterday with a smile on his face, and woke up today ready to do it again.

If you have been keeping up on this blog, you know how much I have dedicated my life to that little boy over the last five years.  Him going to kindergarten was never assumed.  It was not even expected.  But you know what?  He deserves it.  I deserve it.  His family and this community deserve it.

I am so absolutely grateful for everyone who helped make this possible.  It was a giant team effort held together by a mama who refused to give up.

People always told me I was a super mom or an amazing mom or that they could never do what I was doing.  I never knew how to respond to that because I was in it.  I was just doing what I had to do.

But now, looking down from the climax of this achievement, I can see what I did.  I pushed the whole time.  And the support from my friends, family, community and school districts were pivotal in keeping me strong enough to keep moving forward that whole time.

I seriously can't believe it.  Brady P. has shown me once again that anything is possible.

And again.  I'm bawling.