I just love this Fall picture of Wil…hope you all are enjoying this beautiful Friday!

I just love this Fall picture of Wil...hope you all are enjoying this beautiful Friday!

Image

Finding your own rhythm

headphones

I run, I breathe in the weather.

I find my pace, my rhythm.

No matter how smooth the run,

I always hit a place where my legs and lungs start to scream,

and my mind says stop,

its ok, just walk a little.

As much relief as the walk brings

It hurts that much more to get started again.

So, instead, I speed up with a quick burst,

arms pumping, legs following.

This acceleration feeds my body with the lift it needs.

I close my eyes, quieting my mind and completely lean into the rhythm.

My haggard breathing begins to smooth and fall in line with my arms and legs.

My whole body seems as if it is propelling itself and I am flooded with energy!

I am renewed, invigorated! The burn is still there, but I have my rhythm back and feel like I could keep going forever.

It is the runner’s high, the ultimate reward for working past the hurt.

This high doesn’t end when the run ends. Far from it.

It fills my day with energy, urging me to move forward rather than get stuck in overwhelming situations.

The desire to slow down, or stop, never goes away, it always tugs at me.

But, I know how much it hurts to slow down only to start back up again.

The reward lies in conquering my fears by jumping in,

and once there, lean in, listen to my inner self, and find my own rhythm.

Beware of Cribbage

Matt and me Florida

Beware of cribbage.

It can break a marriage in two.

Yep, that card game with the pegs. It’s divorce material.

Especially when you don’t have the directions to play.

My husband said lets just figure it out as we go.

My heart began racing. We needed a game plan, some kind of direction.

He said, we don’t need directions, let’s just play.

But, what if we do it all wrong?

How can we do it wrong if we don’t know what we are doing? Just enjoy the game!

But how can we enjoy the game if it’s not really the game?!

You get the point, and it just got worse from there.

Now, almost 17 years after the “cribbage incident”, we are still married. Happily, even.

In all that time, one thing hasn’t changed a bit. I still want directions, and he still wants to just go with it.  What has changed, is that we’ve learned how to strike a balance and make it work for us.

As most couples who have been married as long as we have, we’ve been through stuff.

Job changes, the high-risk pregnancy with our twin girls, the shock of being told our son has Down syndrome, and a whole bunch in-between.

Receiving the news that our son has Down syndrome hit our marriage hard. We both handled this news in our own very different ways.

My immediate reaction was to get information, make a game plan. I went out right away and found a support group, enrolled our son in Early On, read lots of books, and began to advocate for him.

My husband stepped back from all this and tried to process what this all meant for our son and our family. He was taking it one day at a time.

We were back to our stalemate in the game of cribbage, and the balance we had built over the years was knocked on its side.

What my son needed was what we both had to offer. He needed support and services, and he also needed us to take things one day at a time.

He needed our balance back.

It took some time, and a few bumps and bruises, but we found our way and pulled it together. In the process, being knocked off-balance resulted in us building a foundation that is stronger than ever.

Now, 6 years after the birth of our son, there is little that could put a crack in the foundation we built together.

Except maybe cribbage.

Beware of cribbage.

The Last Hurrah

Wil Calendar 2008 003

I want to live forever for you,

it scares me sometimes when I think of you without me.

You will be independent, I am sure of it.

You will have a job, maybe even drive

And live on your own or with a friend.

You won’t really need me

But I’m still scared to leave you.

You have so many strengths

but I know you will also have weaknesses.

Things like finances may be difficult for you,

and you will need someone to help with those things.

But, somehow, I know you will find the help you need.

You love so much, that people want to love you back.

Those people will take care of you and watch over you.

Even knowing that, I’m still scared to leave you.

I do my best to take care of myself,

to show you how to take care of yourself

and be your own best advocate.

God-willing, my last day on this earth

will be as that wrinkled grey haired mother

still cheering you on, every step of the way.

Oh, so typical

First day of school 1st grade

This morning, on the way to school, we ran into Wil’s friend Seeger.

She took his hand, and they walked into school together as she chatted him up about all sorts of things, like how her Grandma’s dog just died, but she lived a few days longer than she was supposed to, and how the shoes she’s wearing give her blisters if she doesn’t wear socks, and oh, watch out, Wil, there is some dog poop on the sidewalk, and how she stepped in dog poop once and now her shoes are in the dump.

Typical 6-year-old kid conversation.

So, if this is so typical, why am I sitting here typing this story through the blur of happy tears?

Because my son is not a typical 6-year-old, and for that matter, neither is Seeger.

The reason my son is not typical, is because he has 47 chromosomes, while all the other 6 year olds in his classroom have 46.

The reason Seeger is not typical, is because most of the kids in their classroom don’t talk to him like this.

It’s not that his classmates aren’t friendly with him, quite the opposite. They love to hug him, play with him and help him, but very few talk to him like they talk to their other 6-year-old friends.

I understand the reasons. He simply doesn’t have the capacity yet to respond to their conversation and questions like many of his peers do. But that doesn’t mean he doesn’t fully comprehend what is being said to him and enjoy the camaraderie any less.

In fact, the more he is spoken to in a typical fashion, the sooner he will develop the ability to do the same.

But, 6-year-old kids don’t think this way and I don’t expect them to.

And this is why I find that Seeger is so extraordinary in her typical ways with Wil.

It’s not that Seeger doesn’t know Wil has Down syndrome and recognize his differences. She just doesn’t care. He’s her friend, and so she treats him as she would any other friend.

So, as I watched them walk off to class, two 6-year-old friends, backpacks slung over their shoulders, walking hand in hand, heads bent down in conversation, I couldn’t help but shed a happy tear over the typicalness of it.

We do not remember days, we remember moments ~Cesare Pavese

sleeping

Image

Big Band Music, Balloons & Confetti

IMG_3071

This morning, before school, I told Wil he had to get dressed before he could eat his breakfast.

He was less than thrilled about this order of events.

Wil can be very stubborn when he wants to be, and this morning he wanted to be.

But, I know his kryptonite. Get him to laugh, and he is Mr. Compliance.

So, as I took his hand and walked him to his bedroom to get dressed, I started joking with him.

I tickled him and said, “You better hurry up and get dressed, or I’ll eat all your breakfast!”

He laughed, and said, “No, my breakfast!”

I teased back, “No, my breakfast!”

We went back and forth like this as I helped him get dressed, “Hurry up or Katherine will eat your breakfast!”

He laughed, and replied, “Not Katherine’s breakfast, my breakfast!”

As I slipped on his shoes, I teased that his other sister, Elizabeth, would eat his breakfast.

To this, he giggled and said, “No, it’s not Elizabeth’s breakfast, either!”

EITHER?? Did Wil just say EITHER??

Suddenly, Big Band music filled the room and loads of balloons and confetti fell from the ceiling!

Oh, wait, that was just in my head.

How is it possible that we are just standing here in Wil’s familiar bedroom, surrounded by all his familiar stuff, putting on his familiar clothes, on a typical Tuesday morning before school, and “either” has just become part of Wil’s vocabulary? Where’s the music, the balloons, the confetti?

Don’t you get it, it’s not just a word, it’s a comprehension milestone!

But, that’s how they happen, those milestones. All the work and the waiting, the wondering how and when, then, on typical morning doing typical stuff, Poof! There it is. No fuss, no fanfare, it’s just, ok, the milestone committee decided it’s time to give you one, so here you go.

I’ve heard it said that raising kids with special needs teaches you to celebrate the small victories in life. The way that milestones operate, is that really any surprise?

Even if the victory lies in just one word, or one action, I just can’t help myself. I see the clouds begin to part as Big Band music fills my ears and loads of balloons and confetti fall from the sky.

Previous Older Entries

%d bloggers like this: