Strawberry Fields For Real

Hi!

Brady P and I went to visit my parents for a few days.

With our timing, we scored the best time to pick strawberries at Glendale Farms.

I remember going there as a kid with my brother and sister (and parents, of course) and coming out of the fields with red hands, chins and shirts. I loved the tractor-pulled wagon ride that got us to our rows. 

It really is a cool experience, so I was tickled that we got to do it with my own little boy!

P.Pie in his row

The berries were BEAUTIFUL!

He found the BIGGEST one!

Waving from his tractor

That was really the gist of it. The tractor ride was my favorite part again... or maybe eating the berries... or maybe watching people's reactions to how charming this little boy is.

Have a great week!

Shaping Realities

Hi!

If you've read Digging for Light, you might remember a story where a teenage boy, who thought Brady P. was really cool, asked me what Down syndrome was. He had never heard of it.

Do you remember what I did? 

I totally flopped. 

I gave him a text book answer from the 1980's. Not very flattering for that extra 21st chromosome.

Well, today I was talking to a grown man about my son. After a while he said, "I don't really know what Down syndrome is."

I started with the typical extra 21st chromosome biology stuff, but I realized that doesn't really mean much to anyone unless they are in the medical or biology field.

Then I flashed back to that moment I flopped with the teenager. I realized that this was my moment to redeem myself! Someone who didn't know what it meant! How could I shape their reality?

In a mere second, I figured out how to break it all down into two parts. I took a deep breath and started.

"Well, I think there are two main components." I said. "For one, their brain is not really set up to learn and develop like most people do. They have to work really, really hard and do things many times before they really understand most concepts.

"For two," I continued, "I think they are more connected to some of the important things in life. They are better able to empathize with others, show unconditional love and be grateful and joyful in the moment."

There. I did it! And I think he understood.

It was really a neat moment in my life, I suppose. 

I just find it odd because I am a mother of someone who has that extra chromosome, so I take for granted that everyone knows what it is. And when somebody doesn't, I'm so shocked that I almost don't know what to say!

But I think that answer sums it up for the most part.

Then I went on to list some of Brady P's talents and ensured him that even people with Down syndrome are different amongst themselves just like all humans are.

Cuz we all are. And we should respect that.

Brady P. likes to take dogs for a walks. I don't really recommend his services yet because he is quite a leash yanker, but maybe he'll ease up someday... and get a job! Ha!

A Good Direction

Hey!

Nice to see you again.

I was pulling two to three times the hours on a computer in the office, and staring at my own computer was the last thing I wanted to do in the evening. So thanks for your patience.

Town is different since I saw you last. For many reasons, but, to name a few, the trees now have all their leaves, more businesses are open, more people are here and the black flies are out!

All good things, I suppose!

Brady P. is doing great. He gets to meet random people and charm them, so that's always heart-warming!

And it's certainly rock chucking season, so we've been down at the shores. It's wonderful for us both. I try to let him lead where we go and how long we stay. It's just easier for us both that way. I'm not one to promote stressful situations.

Life is good, though.

Braeden's dad is back up for the summer, so they get to spend time together. B-man sure loves to do guys things! I can't say I'm particularly good at them, so I'm happy they both get to do that for each other.

I really don't have anything profound for you at the moment. Just wanted to check in. I hope you are doing well and listening to your heart!

Because it will just keep trying to get your attention until you listen.

For real!

I got to go to Isle Royale too, by the way. For five days!

This is my favorite picture from the trip. We nosed the canoe north from Pickerel Cove, and this was the view. That is Lake Superior in utter calmness on the north shore. And if you look in the background between the middle island the the right side, you'll see Canada. Those are the legs of the "Sleeping Giant."

So things are heading in a good direction!

Hiatus

Hi!

We are doing well, but quite busy.

I'm going to take a hiatus for the rest of May unless a new world of more time and focus unfolds.

Thanks for your patience.

See you in June!

Even little man gets bushed!

Like a Dream

Hey!

Sometimes you just don't know what to say, right?

In those moments, it might be better not to say anything at all! So that's what I did. Sorry I missed you.

I guess the most meaningful thing that I can tell you about right now is how sweet it is to snuggle with my little boy at night.

We get to snuggle up together pretty much every night during the chilly half of the year. That's a lot of bed time snuggles!

And each night (unless I have to exit sooner), I lay next to him until he falls asleep.

Soft lullaby music plays. My left hand rests across the right side of his body as he holds my face in his hands or rubs my eyebrow. We say "night night" and "love you so much" and "see you in the morning" and talk about the day and giggle for a bit.

Sometimes I sing him a song.

Then his breathing deepens and gets a touch louder. He falls asleep in my arms. 

I cherish that for a minute or two.

Then I make my escape. I slowly lift my left arm up. Then I take his soft, warm hand off my cheek, give it a kiss and lay it on his other hand on the pillow.

And wait...

to make sure he's still asleep.

Then I rise and slowly walk out of his room, closing the door and giving a nod of gratitude.

Whew.

I am amazed at how fast he will fall asleep sometimes. It does make me feel good to know that he feels so comfortable and relaxed around me.

That sweet little angel boy.

I know he won't want me to snuggle with him forever, and our first few years were a LOT of work to get him to sleep.

So this feels like a dream.

And I just wanted to share it with you.

Can't get his picture at night, so here's a fun frame nap shot

Little Victories

I think I've alluded to the fact that school mornings are get-up-and-go with no dilly dallying.

He's got to have his one bite (thyroid medicine), pee on the potty, get dressed and ride horses.

No wait, Mom. It's not ride horses. It's eat breakfast.

Oh yeah.

Haha. That is our song each morning to stay on task.

Then, when the big hand is on the nine, I put his shoes, hat, jacket and mittens out for him to choose which goes on next. Usually, during this process, I have to prod him to pick what goes on next and help him put it on.

But this morning, something changed.

I laid out his clothes when the big hand was on the nine. I told him I was going to put my boots on, and, I kid you not, by the time I slid my feet into both boots, I looked over and he had his hat and jacket on.

"Look, Mummy!" he showed me proudly.

Then he sat right down next to his shoes.

"Okay," he sing-songed. "Now my shoes!"

"Are you going to put them on by yourself?" I asked.

"Yes, Mummy."

And I watched in amazement as he did -- ever so diligently. Even the straps before and after. 

He tried his mittens by himself too (yes, it's still cold here!), but I had to help him with one of them.

I knelt down by him and hugged him so tight.

"I am so proud of you, P Pie! You can get your things on all by yourself! What a big boy, you are!"

"Yes, Mummy." he said. "Okay, let's go out!"

What used to be a terribly long, drawn out struggle turned into a quick two minute process. I know not everyday will be perfect like that, but what an amazing step forward!

My little independent boy. I am so proud of him.  He can do it, he wants to do it and he actually does it.

It's still a bit early to imagine this entirely, but someday, all the troubleshooting and struggling we do in a day, just to get through, will be done (or different!). I will have so much more energy for more productive things!

But right now, they are all teaching moments and guidance and persistence. Oof. It's been a lot, but we are getting there, and those little victories like we had this morning sure make it all worth the effort!

Chucking rocks in his duds

Thank you to everybody who believes in him.

Cast Away

I don't kow what else I can really say about this video to make you see the genuine, peaceful nature of Brady P. any more than the video does itself.

Enjoy!

P.S. if you are reading this from the email, please visit the video at this link.

Timed Out!

Oh, man. 

How many Wednesdays are they putting in a week now? Sheesh!

Yesterday was my birthday, so I didn't write, as you can tell. But I will say that my soul entered its thirties as a lamb and it's going out like a lion!

Hear me roar, baby. I'm on fire!

Okay, here's a story for you.

I found this situation to be quite eye-opening, so I'll see if I can share it with you properly.

I picked up my little man from his grandparents' house on Saturday. We drove back to Copper Harbor on Sunday.

On the way, I had to stop for gas. It was just over halfway of our five hour drive, so I figured we could both go in for a potty break and pick out a snack. It's just the novelty of it.

I pulled up to the pump. I pushed the "Pay Inside Credit" button cuz I knew we would make a purchase inside as well.

I returned the nozzle and opened Brady P's door.

"Hey, dude! Are you ready for a break?" I asked him.

"Yes, Mama. And how about a treat?" he smiled.

"Okay." I acquiesced. "Wow, you are still dry! We will go potty inside too."

"Okay, Mummy."

And I helped him heroically jump out of the van.

"Do you want to put on your mask right here or before we go in?" I asked and fumbled with our masks. I put his on before we went in.

Then we used the restroom. The one-seater woman's room. I went. Then I helped him go. Then I wiped down the seat because he can only do it if he stands on the seat. We washed our hands.

I opened the door to see two ladies waiting in line.

"Oh! I said. "Thanks for your patience!"

They were not amused.

B and I browsed a couple aisles. I grabbed an orange juice. He found the ice cream. As we scanned the shelf for something not-so-dairy, I heard a man shouting.

"Your gas is timing out!"

Pause. I was not paying attention.

"Your gas is timing out!"

I heard these words, but I thought somebody was saying that they couldn't pump all their gas or something.

Then, the man behind the counter got closer.

"Ma'am! Your gas is timing out! It thinks you're a drive-off!"

Oh my gosh! He was talking to me!

"Hurry up, Braeds! Pick something out! How about a Rice Krispie bar?"

"No, Mummy," he said, still eyeing up the ice cream cooler.

The man behind the counter grew increasingly nervous, so I figured I'd do the unthinkable -- use my debit card twice in a row. Ha! Like that was a big deal!

I left B to stare at ice cream, and I walked up to the counter, noticing a muffled alarm going off. Geez.

"How about if I just pay for my gas now and then pay for our other things when we are done?" I asked him.

"Yeah, sure, just, yeah," he stuttered, obviously agitated.

I have never heard of gas timing out before, but apparently it's a big deal!

I paid him and then found my child who picked out a push pop. Good grief. He can't push his own push pop! I knew it would be work for me while I drove (sticky work at that!) but it was also not really a dairy item, so at least we would sleep that night.

"Okay, bud. Put it on the counter, so he can scan it," I told my triumphant child.

Then I used my debit card again for a pittance of an amount, but at least the man had relaxed.

"Thanks for your patience with us," I told him with sincere eyes.

"Yes. Of course," he replied.

B and I walked out, and I half expected the police to follow my van and ask me if I paid for my gas, but that didn't happen. Good thing because I didn't get my receipt! Ha!

While I buckled the sweetest little boy on the face of the earth into his carseat, it kind of dawned on me: I am a very patient person.

Nothing we did, from the time I pumped gas, until the time I got timed out, was hurried. At the same time, nothing was too much out of the ordinary either. 

We were simply a mom and her son making a pit stop on the way home.

My next question was, who the heck sets the time limit for a drive off? We certainly didn't make the cut. How many other families don't make the cut? How many other unhurried souls don't make the cut?

I don't know.

And now I wonder how many of those timing outs he has in a day... or a month!

I don't know!

But we apparently took too long, and that was just fine with me. Next time we take too long, I'll know what I am getting shouted at for!

Back home where we can be in the moment

Waves of Adoration

And so this is Spring Break.

Woo hoo!

Spring Break this year does not mean Florida beaches for me (I did it one year when I was in my 20's!). It means little Brady P. got to see his dad and grandparents. He is still with them, and I am grateful.

Where does that leave me?

In beautiful, chilly Copper Harbor to do whatever I want.

Whatever!

Sure, I stayed up on my jobs and did some adult things, but I really felt free this week.

Last night I danced under the stars.  The stars! What a beautiful place to look under a crystal clear sky. So marvelous and freeing. I cannot leave the house once he goes to bed here, so that was a treat.

I got to listen to music for hours with my lover. Also a treat!

I got out for walks wherever and whenever I wanted. 

It was all so freeing!!!

Yesterday I walked to Hunter's Point and sat on the beach for a bit.  That felt unusual because I don't often go there alone, and I usually don't walk there because it seems so far away.

In my jovial aloneness, I thought about little Brady P. and how he loves to watch the waves roll in. I imagined his little body convulsing as his eyes popped out of his head.

Then I was suddenly taken over with a figurative wave of love and adoration for him.

Every time I think of him when he's away on a break, I get this feeling. My whole body feels saturated with love and devotion for this little person who has entered my life and pretty much taken it over.

We are together so much, that his absence really allows me to feel the impact he has on me. How he's changed my priorities. How he's taught me to love and accept everybody in such a big way.

He is truly a magical little person, and I am one of the luckiest people on the planet to get to spend so much time with him.

It is surreal, and the gratitude I feel is marrow deep.

I feel like you can see the adoration in my face in this picture from a few months ago. His naps on me are now a rarity... but so precious.

That little boy.

I can't wait to see him again so we can, you know, go throw rocks and listen to kid music all day long and he can boss me around a bit more.

Ha!

Thanks for your patience with me while I enjoyed a bit of freedom and doing things just for me.

Back to the grind soon! I hope you are great!

The Lucky 95%

I know I've touched on this before, but I have the kid who says hi to everyone.

He waves ecstatically to each vehicle that drives by when we are on a walk.

He waves and shouts, "Hiiiiii!" if he hears a car alarm go off or a car beeping when it locks.

He hugs his friends when he sees them.  Sometimes two or three times!  He even hugs strangers when the universe grants permission. He is no dummy. He is connected to more than we can see.

Right now he is six-and-a-half years old. I do not tell him that he can't say hi to everyone. I won't tell him that he can't give random people hugs (especially once the pandemic is over!). I will not hinder his innate, loving, accepting, inclusive behavior because that is not my place.

Someday, he will be an adult that does this.

How do I feel about that?

Kids are one thing, but as people become adults, things aren't so cute anymore.

When I was growing up, or, heck, any moment before Brady P. came into my life, I was afraid of people who said hi to everyone.

Afraid!

They just said "hi" and waved ecstatically, and I was afraid!

All I knew then was my perspective. I was obviously insecure with myself. I absolutely did not take the time to understand other people who seemed to be different than me.

Now I get to.

My previous experience gave me compassion for the people who don't say hi back to my super-friendly little boy. Most people do, by the way. Probably 95% of people are absolutely charmed by him.

The rest pretend they didn't hear him.

That used to be me!

But I can't think, "Geez, what a jerk!"

No!

I just get to think, "Yup. I used to be like that. Maybe they will understand someday."

But maybe they won't. Maybe it is not their journey, and I cannot judge. That is not my role.

Or any human's role!

We are all just here doing the best we can with what we have and what we know.

That's exactly what Brady P. is doing.

He lifts the hearts and spirits of 95% of the people he meets just by being himself.

It's true that you can't please everyone, but 95% isn't bad.

That other 5% may or may not figure it out someday. I was so ignorant about it that the type of person I used to turn my back to came out of my own body and now we spend nearly every day together.

Ummm, message received!

And now we get to share that message with others.

Sunday was World Down Syndrome Day. 3/21. It stands for Trisomy 21 which means there are 3 chromosomes on the 21st pair. Pretty clever, hey?

It's also the first day of spring, and this year in the harbor, it was glorious, so we had a little parade to celebrate!

You'll have to visit the blog to see the video. Thank you to my friend Steve for putting it together!

And considering the fact that I am still a nut that waves to random people, I will be proud of him when he does that forever too.

The No Zone

Hi!

How are you doing?

I can't hear you.

I said how are you doing???

Oh. Nope. Still can't hear you. Guess this reading thing is one-sided.

Well, I hope you're good. At minimum.

If you're not, then you just have some things to work through. It might be one thing, it might be one million. But you have to start somewhere!

Best of luck!

Parenthood is quite interesting. It's as though your kid knows when they overcome a hurdle or milestone, so things can get easier in one department, but then they make it harder in another.

Brady P. is 90% potty trained, and I am so proud of him! His sentences are flourishing. And he no longer says "Mup!" to me 1,000 times a say. Just more like 5.

If you don't remember, "Mup" is sort of his game of "gotcha!" And he really would get me. Like, every time.

He is also, for the most part, doing a really good job of staying on task to get ready for school. That's imperative. I don't wake us up with enough time to dilly dally. Just enough time to do all the things and run down to the bus.

So what's the trade off?

The "no" phase. 

Even Miss Liz, his aide as school, noticed.

"Hey, Braed, are you ready for supper/ to getting dressed/ to go out for a walk/ to see a friend/ to use the potty/ to eat your yogurt?"

"No, Mummy. I said no."

And he means it.

I have to do a lot of bribing and deal making with him. For instance, if he wants me to say yes for him to watch his iPad, then he needs to say yes to peeing on the potty first.

"No, Mummy. I say no."

"Okay, then. I say no iPad. When you show me you filled your potty up, I'll give you your iPad."

Then it goes either way. It depends on his priorities at the moment, I guess.

Liz keeps reminding me that we will get through this. We will. It just gets a bit annoying because we seriously can't go anywhere on the weekends. I mean, not even for a walk! He spent the last two Sundays in just his undies!

Now you can condemn my parenting choices for that, but I know that he just wants to have his way sometimes. He works really hard at school, on the potty, getting ready for school, reading his evening book and speaking full sentences, that I just have to give the kid a break.

I mean, that is a lot even for a normal kid. This child has to work much harder to do things that most kids do. For instance, he tries sooooo hard to get his sentences right (and out quickly) that he rolls his eyes up and stutters several times before he spits it all out. He is processing a lot.

So I will give him a few weeks of "no" (hopefully that's all!) because I am so proud of him, and he is really developing quickly in many areas. 

He just needs to feel like he is in control sometimes, and he'll get over being so negative about basic daily life. It's really not that fun, and he knows it.

But he can do what he needs to do. I mean, he's six!

Just to prove how hard he works, here is a video Miss Liz made of him during one recess. Just one! And he's on snowshoes!

If you can't see the video in the email, please find it at Downs by the Bay.

Have a great day!

In the Dugout

Hey there.

My jobs have taken their toll on me this week, so I'm on the bench.

See you next time!

100% or Bust

Let's clear one thing up right now.

If you ever see a family with a child with Down syndrome, don't ever, ever feel sorry for them.  Don't think that they wish things were different.  Just know that those parents and siblings (if they have them) feel so blessed.

They feel like this extraordinary person in their life is truly a gift.  They know that they have already learned so much more than they ever would if things would have been "normal."

I speak from experience, and it echoes for everyone I have ever talked to who has this special person in their life.

Nobody would change it.

Nobody.

If you happen to be somebody who is in this situation and you would change it, please feel free to let me know.  I haven't met anyone like that before.  I am very open-minded and I will listen.

Now let me tell you how cool my little person is.

He likes to do things.  Lots of things.  And he is surprisingly good at anything he likes to do.  I believe that's because he does those things 100%.

It's either 100% or not at all. 

I suppose he will go through the motions for some things if he has to for a reward, but otherwise, it ain't happening.  (Like getting his boots on for the bus some mornings... ugh!)

Take the simple act of eating a piece of chocolate.  Like most normal human beings, he loooooves chocolate.  He doesn't get it often, but when he does, he sits down somewhere, holds his pinky up, takes tiny bites and (from what I can tell) thinks only about how wonderful that chocolate tastes.

He focuses 100% on that chocolate.  That's smart.  And it's being in the moment.

The other day he found "Baby Sadie" a doll who helped him learn how to potty train.  He picked her up and fed her a bottle.  He rocked her, kissed her and hugged her.  He petted her head and talked to her.  Then he laid on the chair with her and covered them both up with a blanket for a rest.

What an angel boy.

When we play a matching game like Memory (we have three different ones!) he is all in.  He pays so much attention that he remembers cards that I completely forgot where they are.  He has his favorite cards out of each stack and, when he finds it, he puts it in his little corner and tries to find the match each time after.  He is so diligent and sharp.

The other day I set up the hockey net, brought up our sticks and Braeden found the pucks.  We took turns shooting.  He was so into it that I made us each little signs with our numbers and he said they should go on our backs.

I obliged.

He was great about taking turns.  He positioned himself so well that he made 90% of his shots, and he even showed off some stick handling skills!  He was really proud of himself, but do you want to know the coolest part?  He was really proud of me too.

I did not make all my shots because I went farther back and tried fancy moves.  But when I made it, he squealed, "Great job, Mummy!"  And he meant it.

He doesn't do it if he doesn't mean it.

And low and behold, he is one of the best impromptu dance party buddies I have ever known.  

When I get a wild hair and ask if he wants to have a dance party, he is down.

Now I'm not going to pretend that we just turn on some music and dance.  Oh no.

We dance party!

We turn it up, plug in the moving colored lights, put on a skirt (sometimes with jingles), don a wig or hat, push on some sunglasses and, if it's dark, break out the glow sticks.

Not only does he love the dress up part, he loves to show off his moves.  I mean, we can't just look like good dancers, we have to be good dancers!

I'd like to throw up my hands and say that I don't understand how he comes up with such awesome moves, but I think it's nature and nurture.  The kid has moves.  He choreographs his body into intricate patterns.  Now, we're talking floor spins, inversions, splits, bends and the whole what-have-you.

The kid is on fire!

He just gives it his all.  And why wouldn't he?  What's the point of going through the motions when he can be really good at all the things he likes?  What is stopping him?

Nothing.

Absolutely nothing.

And that, my friend, that is the beauty of it all.

A person with an extra chromosome knows what they like, and they do it with all their heart.  To them, there is no other way.  And for us 46-chromosome people, it truly is a gift to watch someone live that way.  We would be silly if we didn't try it ourselves.