A New Move

Aidan has lived in my home since the day he was born. Recently, we found a house that's handicap accessible and he lives there now with his mom and dad. Aidan loves his new house! I miss seeing his sweet face in the morning and hearing his laugh echo throughout the house. It makes my time with him seem even more special. Like the little adventure we had today:) 

Spending time with Aidan helps me to slow down and to detach myself from petty issues which I have no business entertaining. 

Everyone involve with the care of Aidan is stretched in endurance and it can produce a bone-tired fatigue. But there's no quitting. It's a situation where the dream isn't the reality but, you make peace with it. Hemingway said: "The world breaks everyone" That's what a diagnosis does to a family - and it becomes a slow nightfall of acceptance. The milestones are A-typical but you rejoice in the little things! With feet firmly planted in mid-air...you live between trials and faith. Underneath it all, Love is there. And Love speaks clearly enough. 

Happy new home, Aidan! I love you.

What I Know About Prayer

What I know about prayer:

Not much.

But I know enough to be a believer.

I have a visual image of prayer:

 I speak it out.

Sometimes, I give it a little push.

I blow on it.

Just a little puff...like a

breath on a birthday wish or a dandelion.

I visualize it rising.

We have lift off!

 I imagine it sprouting little wings..

It's like mailing a package, really.

"Is it fragile?"

Yes, this ones' fragile.

"How soon do you need it to get there?" 

As soon as possible. 

Priority  prayer..

"Does this prayer contain any liquids?"

Possibly a few tears..

"Would you like to buy insurance?" 

The prayer itself is my assurance. 

 I do my part: The asking.

It seems to be set up this way.

The formal request.

Also known as: "The initial request"

Because some prayers need repeating/resending.

I don't mind the standing in line...or the waiting.

A lot of folks are mailing off prayers...

And, I've done my part..


"Tracking on this?"

You mean I can keep checking on it? 

No, that sounds like worry.

Worry is like adding too much tape to a package.

Adding layers you don't really need-making it impossible to open.

 A sticky situation..

No, I trust its course.

I've known this address for decades now.

The Lord and I sealed the deal.

His stamp of approval on questionable contents...

"Would you like conformation on this?" 

Oh yes, please..

In the form of an answer please.

And when I receive a letter in return,

I make sure I send off my thank you note.

It's the etiquette of the universe.:)

I

Onyx.The Big Black Dog.

A wild beast lives in my house.
I'm not sure how it happened.
Something about a "Puppy" and we can "Train it."

I'm waiting for that last line to manifest itself...

Onyx is so big and so strong, I often forget he is still a puppy
His year is running out.
He better start "Adulting" soon.

He runs down the hall in the morning to greet me.
Because he misses me..
and he loves me....
and I'm the only one awake.

I trip over him.
I continue on my hands and knees into the kitchen.
No rain of drool
Or dog hair mess
Shall keep me from my coffee press!

He bolts into my room in the middle of the night.
Because he misses me..
and he loves me...
and I'm the only one awake.
(Now that he's on my head)

Maybe this is his teenager stage and prefers his fun in the middle of the night.

I don't know...but it's annoying.

So is his cigar smoking.

Or whatever that smell is...

Onyx is a labrador retreiver.

Look..he's retrieving my bra.

I say "drop it!"

He stares me down.

I say "come here!"

That's him leaving with said item...

He chews my pot holders and kitchen towels.

There's not a pice of furniture (fabric or wood) he hasn't tried to eat.

I guess you can say we share the same taste in decor..

He eats my underwear.
In need of confession and in an act of repentance and restitution, he returns them to me.
In the form of vomit.

One night I made Aidan cry.
He cried because I yelled at Onyx
For a long time..
And then I yelled again.

Aidan looked at me in disgust.

I said: "But, he ate my shoe!"
"Aidan, HE ATE MY SHOE!"

Sometimes I don't even think I like this dog.

But then there's this:

And I almost forgive him..

Happy Birthday, Aidan

Happy 9th birthday, Aidan Lee Thomas!

This is your birthday picture!
You were only a few hours old.
We were just getting aquatinted!
Saying your name out loud...
Telling you how happy we were to finally meet you and how much we loved you!
We kissed your nose.
Passed you around and counted your fingers and toes.

A perfect little boy.
Perfect in a different way.

We didn't know at this moment what nine years later would look like.

It would be a different dream, on a different path.
There were slow starts.
Words that never came.
The silence was confusing. Frightening. Heartbreaking.

And then a diagnosis that makes you question the depths of your faith.
Unwanted but, at least we knew.
It was a starting place.
No time to escape into the luxury of denial.
Not when reality was staring us down.

So, here are some things you do:
You invite the truth in.
You entered a dark place..but your eyes adjust.

You guard your optimism.
You leverage your faith over your fears.
You live outside your own heart.
You experience a fatigue you have never known before.

There are doctors visits and hospital stays .
This treatment.
That pill.
A new and complicated diet.
It seemed at times that we were chasing our own tails.

 Circles.

There was progress, then two steps back.
Bargaining with God and prayer requests.
Healing services and heart cries poured out on paper.

Stress tries to scoop you out from the inside leaving you hollow.
Sometimes there are just not enough hours in the day.
Some days are just too long.

You see the world continue on while yours gets smaller and more isolated.
But that's okay because you're too tired to try to keep up anyway.
Help shows up in a different shape and form than one might expect.
It fills you up again..

Because the fight is on.

The motivation comes from Aidan himself.

You learn things about yourself, such as:
Dispare and hope can coexist in the same heart.

You hear yourself saying things that aren't exactly true:
"He seems a little better.."
"We're fine"
"No, there's nothing you can do"
Because the sheer awkwardness and weight of the truth is too much to be told.

Your house starts to look like a hospital room.
Medical equipment and supplies are your new accessories.
Rugs are removed because wheels are the new legs..
Not exactly House Beautiful..
But that's ok..you'd be amazed at what you'll find beautiful.


We have goals for you Aidan.
A life worth living because your are cherished and lavishly loved.
We will never stop seeking a way to make your life better.
Never.

If heaven had warned us and said:
"This one may make your heart bleed and your eyes flood.
This one will bring you to your knees in a kind-of grief that "looks like weakness and feels like surrender." This one will meet physical barriers that will not allow him to be fully included in society.
This one may be prejudge and exclude. This one will need extra care. There will be very little sleep.
You might feel alone...but you are never alone."

Our answer would have been "yes."

Do you ever hear a secular song and receive it as a prayer?

This one has always felt that way:

"When the night has come and the land is dark and the moon is the only light we see.
No, I won't be afraid. No I won't be afraid..as long as you stand by me."


So, this is what it looks like 9 years later..

Happy Birthday, Aidan..We love you!