Snow Day

It snowed.
It's freezing
School was canceled
Aidan wants to go into the hot tub
What's wrong with this picture?

Actually, nothing.
Moments before shooting this video, my daughter and I talked about how a year ago, one of us would have had to go in with him to hold him in case of a seizure. Today, we stood on the sidelines complaining about the weather like all envious Virginians who are not in Florida golfing.

  Aidan is the big fish in his little pond fending for himself.

Aidan is 12 now. He has had what I call "Hands-On" years and Hands-off" years, depending on his seizure activity.

These pictures are examples of hands-on years. (and if not "hands" then equipment such as a walker which we call Green Car or a wheelchair.)

I felt compelled to write about Aidan today because of two memories that came up on FB.

Both posted on this day, 9 years ago.

The first post in the morning read:

Aidan has an appointment with a speech pathologist today to find out why he his language has not developed. It's very frustrating for him, and sad for us. I do not want to hear bad news today, but we need to know how we can help him-whatever the situation is-I would really appreciate your prayers.

The post later that night read: 

It was a good first meeting with two Speech Pathologists. We learned that there is something wrong with the muscle tone and structure of his mouth. Maybe another issue that is more serious but I am hoping they rule that out. We hear back soon. But, we have help and a plan! He is sweet, intelligent and I believe he will soon speak. I can't wait to hear his voice and his first word! Thank you for your loving support. 

Oh, if only it were just week muscle tone and the structure of his mouth. This was all before his first seizure. We had a lot ahead of us...

After the diagnosis of Polymicrogyria and the reality sunk in and the acceptance came, I wrote this poem about Aidan while he lay asleep next to me: 

No words
Slow starts
Big smile
Melts hearts
Little words from little hands
A slight divergence from well-laid plans
Not always sure how to finish this race
God steps in
Amazing grace
No words
Slow starts
Big smile
Melts hearts

 There is a voice
that doesn't use words.
Listen
~Rumi

We have learned that love has many languages.

Sometimes the caregiving has been exhausting.

Loving and knowing a child with special needs expands your ability to feel compassion for the people in the world who are different and may not be readily accepted. 

In the early days, I clung to a few comforting scriptures including Psalms:34

Is anyone crying for help? God is listening, ready to rescue you. If your heart is broken, you'll find God right there: if you're kicked in the gut, he'll help you catch your breath. 

It's been a day of reflecting receiving Aidan's diagnosis nine years ago and all the ups and downs. 

I will count this day a good one. 

The next is a mystery.

I haven't heard his voice yet, but I've seen his heart

And I do know this: 

"There is a joy that is coming....

Mom Diaries: No Small Thing

My mom describes this trip as "fraught with peril."

Just when I thought her flying days were over, she decided it was now or never, and she would make the cross-country trip to meet her great-grandchildren!

Mechanical difficulties with the plane caused a 3 1/2 delay and thus began her perilous journey!

At 88, a full day of flying takes a lot out of a gal, and when she landed, she said she needed a hamburger. Immediately.

Thankfully, there's always a Cracker Barrel nearby, and here we are getting warm by the fire:)

So far, so good. 

(On a side note, this next picture was taken at our local Cracker Barrel just a few days later. I thought my mom was excusing herself to go to the restroom, but no, she walked over to the table of men and held a board meeting. I'm not sure what she was saying, and she has no fear of the ridiculous. Soon, all heads turn my direction, and I can't decide if I should wave and claim her as my mother or get busy with the peg board game to see if I can achieve anything above Eggnoramous level.) 

Here is another happy moment before the peril continues: The first of the great-grandchildren to arrive for the family reunion. 

But then, this happened: Peril!

An emergency room visit ends with a diagnosis of pneumonia.

Her cough is deep and raspy. Her days are spent in bed with low-grade misery.

I wonder if the trip was too much for her. 

I have moments of guilt and selfish regret.

But she is already reminiscing about the trip, and the wonderful family time she has had.

A couple of things stand out to her.

An invitation to lunch at my sister-in-law's home and a get well card from my church. 

I'm tempted to say "It's the little things" but a little time offers a new way of seeing things. 

Now I'm wondering when the little things became big things. 

It's no small thing to take the time to prepare a meal, set the dining room table and carve out the time to extend hospitality.

If I asked my mom if she remembered the meal she had at my sister-in-law's, I doubt she could. 

I think what she is describing is something like the quote of the late great Maya Angelo:

"People may not remember exactly what you did, or exactly what you said, but they will always remember the way you made them feel." 

Ditto with the card from my church. It stands on the dresser, and she comments on it often. 

I'm finding myself so thankful for family and church family who have made such a loving impact on my mom. 

These small (big) things add up to something.

It's a great medicine this feeling of being remembered and to feel yourself among the included. I'm feeling it closely related to Jesus's teaching on giving and receiving. And for that I am grateful.

The healing has begun.

The return flight has been changed three times, but I'll pick these lines of Saint Theresa's prayer to dwell upon: 

May today there be peace within.

May you trust God that you are exactly where you are meant to be. 

A lot of things happen in a lifetime, but it all begins and ends with family, 

So let it be...

Do It Again

When I was in California, I repeatedly commented on the beautiful weather to my mom.

It was fortifying and refreshing.

I found I wanted to be outside more than I wanted to be inside.

In my home state of Virginia, especially in July and August, I can only take so much of the heat, humidity, gnats, and mosquitoes. I need to get inside just to feel normal again.

I could tell, that for my mom, it was just the norm because Californians are used to one beautiful day after the next beautiful day after the next beautiful day.

It made me question what I may be becoming dulled to in my life.

Am I unaware of irreplaceable experiences right in front of me?

Today's reading included these thoughts:

"Because children have abounding vitality, because they are in spirit fierce and free, therefore they want things repeated and unchanged. They always say "Do it again"; and the grown-up person does it again until she is nearly dead. Is it possible that God says every morning, "Do it again" to the sun: and every evening "Do it again" to the moon? It may not be automatic necessity that makes all daisies alike; it may be that God makes every daisy separately, but has never got tired of making them."

Blessings to be noted today:

Morning coffee

Aidan's laugh

Homemade guacamole

A home that serves as a sanctuary for a world-weary spirit

People who give my life meaning

Vivaldi's Four Seasons

Any time left with my mom

On this reflective Saturday, it's thoughts like this that make an ordinary day extraordinary.

Do it again. :)

An Anniversary

Some years fly by. 

Some anniversaries are back in a flash.

Not this one. 

I've felt every single measuring unit of this year. 

July 3rd, 2018 marks one year since the fire. 

Coming home from a visit with my mom in California, I opened the door to our Floyd home. 

 My throat and nose filled with the stench of thick smoke. 

I wasn't even sure what I was looking at. I shut the door quickly then opened it again to try and make sense of the what I saw. 

A huge hole in the floor where the ceiling fan fell through. Everything was a charred mess. 

We had been robbed, and the house set afire. 

I woke slowly this morning, thoughts dulled until the memory dawned. 

It's been a year. 

I let the memories come while still in a cocoon of blankets. 

"My joy has flown away:

grief has settled on me. 

My heart is sick"~ Jeremiah 8:18

My heart was sick. 

From the same bed, I text a friend to tell her what happened. 

She replied:

"I'm coming to you right now." 

And she did. 

Many people came alongside my family during that time.

Reminding me that Hope comes alongside seasons of despair. 

"We can be mended, and we mend each other."

Today, I remind myself:

Life is full of unwelcome events. 

Life is under no obligation to edit out all the rough patches. 

Hope is a vital part of life, and it really doesn't take a huge amount! It's kin to faith and only takes a mustard seed portion to be effective. 

I am never alone. 

My God is El Roi. "The God who sees me."

I have counted my losses and saved the memories. 

 And Hope whispers: "The story isn't over.."

A year later, I am feeling a little more freed up from grief. 

Thank you for letting me share this anniversary with you, dear readers. 

Let freedom ring.

Dear 2018

Dear 2018,

Welcome!

I don't think I have ever wanted to see a year end as much as I did 2017.

2017, you were full of yourself.

 Full of challenges, health issues, loss and heartbreak.

 2017, while we are still on speaking terms I want you to know I've come to appreciate the lessons you taught.

"There are years that ask questions and years that answer"~ Zora Neale Hurston

2017, you left me asking a lot of questions. Mostly the Why questions as many people do when misfortune arrives (totally uninvited) in their lives.

It's not a useless question, it's just that they don't matter. That's when you shake hands with acceptance. It's fertile ground where you learn new strategies for living in a world that continues to move on in spite of your loss.

2017, the most beautiful lesson I learned living with you for the past year was personally experiencing the Lord's grand exchange of "beauty for ashes."

It's a real thing.

When you scoop up the rubble and ashes of your life and hand them over to the God of the Universe, He takes the ashes~ and in exchange, He presents you with the making of an exquisite bouquet.  One stem at a time. It's as humbling and heartwarming as a child who presents you with a dandelion "picked just for you!"

My bouquet is getting quite full now.

My vessel doesn't feel so empty.

It's quite an artistic arrangement! Build from the sacred work of loving family members, friends and co-workers who echoed and reminded me of God's love and care.

Thanks for that 2017.

2018, don't think you are getting off easy just because 2017 is such an easy act to follow!

I do have certain expectations of you.

We can  work together.

Lets see what beauty we can create.

"And now let us welcome the New Year full of things that have never been."

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!

Seasons of Life

Autumn has arrived! 

Does it seem to you that it happens suddenly? Incrementally AND suddenly? 

You get into your car and start to drive and all at once you're in the midst of vibrant ruby reds and deep orange bursts of color? 

That's my experience every year and I always have the same Steve Jobs reaction: 

"Wow,Wow,Wow!" 

When Fall makes her appearance on the East Coast, there is no mistaking her.

 She creates a Cinderella entrance and after living in Virginia for 33 years, her beauty still takes my breath away. 

She brings crisp, prepare-something-pumpkin-kind-of-weather. (and let me get my scarf on first..) I want something warm in my mug and develop a desire to participate in random acts of pastry.

I wish she would stay longer..but like Cinderella she has a curfew. A set exit strategy and she seems in a bit of a hurry to leave!

In her rush, Cinderella left a shoe behind. Fall leaves the party half naked! And makes a mess while she's at it! Dropping her leaves everywhere like a woman trying to decide what to wear and before she knows it - the entire contents of her closet is scattered all over her bed. 

Or so I've heard...

Then someone (hopefully one of the much younger people living in my home) will have to pick up after her. 

Raking up whatever is leftover from her Haute Couture Fall Collection...

Then it's haste la vista, baby! Make room for Old Man Winter and his famous work of art titled: Whiteout. 

He's a no frills kind-of guy and if he's not too grumpy he might let us keep our electricity..

Fall also graciously hosts my granddaughters birthday! You can clearly see how old she is:) 

She learned this for her big day! 

"How old are you, Penny?" And up pops her two bunny ear fingers..

"I'm two!" 

Aw....I'm loving this season of life with grandchildren. We learn a lot from each other! Like a recent lesson learned with Penny in the grocery store. We we standing in line and she was very intently looking up at me and sort of flapping her mouth open and shut and performing an awkward chewing motion. It was a cross between a snapping turtle and a cow chewing cud. 

It was bazaar looking and I was trying to figure out what the heck she was doing (and if I needed to call 911...) and then I realized she was mimicking me....chewing my gum. 

I no longer chew gum...

Humbling lessons learned in a check out line from a (bunny fingers up!) two year old:)

When Aidan was a toddler he would tiptoe into my bedroom early in the morning and climb into bed and make the sign for "book" which meant he wanted me to tell him a story. 

For some reason, Aidan liked to touch my face when I read. Over time he would touch a certain spot on my face with one finger. 

I'd like to say it was a freckle. 

Freckle is a cute word. 

But alas, it is an age spot. 

Not a very cute word. 

It's about as cute as the word 

"Incontinence" 

So, I decided to call it my ..

"Not Freckle" 

My Not Freckle is below my left eye, and there his finger would rest as I read or told a story.

I'm a cud chewing spotted cow..

You have no idea about these sorts of things until you have grandchildren!

For many reasons my Not Freckle holds sweet memories for me and if I had the chance to have it lasered off, I wouldn't take it. 

I might for those other members of Not Freckles family who are definitely age spots and not cute at all. Squatters who have no permission to be on my personal property!

One of the precious things I love about my grandchildren are their laughs. 

Honestly, if I could bottle them up I'd have some kind of miracle cure, for sure. 

Maybe even the fountain of youth in a cream!

But I'd put it nowhere near my Not Freckle!

Not Freckle feels like Home.

"Children's children are a crown to the aged" ~ Proverbs 17: 6

Amen. 

Be Honey

I just spent seven days in a hospital. 

Not as the patient.

My brightly colored bracelet read “Patient Care”

AKA:  “Wife”

This bracelet allowed me to sleep in the patients room, have my parking validated and drink as much ginger ale as I liked - until I could recite the alphabet in burps. 

(In a hospital, entertainment is up to you….) 

I could sleep in two chairs pushed to gather, the window bench or, if lucky, (and an order got issued) a cot. 

If you see a cot roll into the room, you might feel as though you have just won the lottery, burst into tears and wonder how in the world Publisher’s Clearing House found you in the hospital!

But, after one night, I decided I preferred the window seat. 

It had a window. 

A window in a hospital room is important. It reminds you that this is a pause in life. Your real world awaits...

In a hospital, nothing is more true than this adage: 

“You catch more flies with honey than you do with vinegar."

YOU DO NOT, under ANY circumstance, want to annoy your nurse. 

DO NOT ANNOY YOUR NURSE!

Bruce Lee said “Be Water”

I say..”Be Honey” 

I noticed, in my seven day stay, there were three types of nurses:

The Excellent

The Good

The Bad

1)The Excellent Nurses rise like cream and you usually find them in the the ICU where it’s literally a matter of life and death. We had three excellent nurses in the ICU. They might as well have been doctors - excellent in their care and knowledge. Thoughtful, caring people who said things like “guests are not allowed to sleep in the ICU rooms, but if you fall asleep in that chair…I won’t wake you." 

2) There are many Good Nurses. Most people who have a calling into nursing are caring, good people. Good Nurses are also happy people! In seven days, there’s time to get a peek  into a life. I noticed that the happy nurses, as much as they love their work, have more going on then their hospital jobs. It's not their only source of fulfillment. They salsa dance…

3) The Bad Nurses steal your iphone charger. 

But, you’ve been warned. 

“Do not leave your valuables in your room unattended." 

But honestly, with all the losses that can occur  in a hospital…I'll take an iphone charger. 

Thankyouverymuch.

And, Your  welcome…..

Random hospital observations: 

All the doctors looked about 18. 

 How did I possibly arrive at my age without earning my medical degree?…..

Alas, it’s too late for me. No one wants a doctor who can’t remember where they parked at Krogers..

But, it’s never too late for crochet!

About as close as I'll get to stitching anything…

2) It’s OK to walk around in your PJ’s. We’re all Wal*Mart People in a hospital…

3) If a hospital volunteer sees you sitting alone in the dinning area - they might strike up a conversation! Like the friendly 86 year old man who asked how I was. He told me he was just glad to be above the grass as opposed to being under, and that before his work at the hospital, his career was in hospitality.

He said in his field, the term “86” had a certain meaning. 

“Out” 

“Off the list” 

He said he hoped to make it through his 86th year with out being kicked off “THE LIST”

He said he enjoyed life, work and people. 

He said he was slowing down a bit - and that it took him and hour and a half to watch 60 Minutes. :) 

“Laughter is as a medicine”~ 

I started to wonder if I knew any 86 year old women I could introduce to this kind, humours gentleman. 

And by “any other women”…I meant my mother. 

I would love to sit across from him at my Thanksgiving table. 

He and his conversation were what I was thankful for that day.

One tends to count their blessings in a hospital..

I think of him often.

I pray he stays on “The List” for a long, long time. 

The Good Nurses encourage walking. 

Lots of walking. 

Walking around in little circles allows you to peek into other patients rooms and wonder if they still have their iphone chargers…..

By day six, we ask if we would be allowed to walk in circles outside. 

We wanted to see and feel that big yellow circle in the sky. 

We're granted permission from our favorite Good Salsa Dancing Nurse. 

She unplugs the heart monitor my “patient” is tethered to. 

It feels like this: 

It turns out my “patient” wants to breakout.

He wants to get into the car and drive to Mc Donald’s for “good coffee."

(Never mind the very fine coffee station serving freshly brewed organic coffee, mocha’s, or any other skillfully prepared barista concoctions you can thing of right in the hospital dining area…)

My patient is the Marty Crane of "Can't a man just get a plain cuppa Joe around here?"

We do it. 

Faces are changed to protect the guilty.

I look down at my bracelet. 

This is not good “Paitent Care”

This is just NOT good patient care. 

I look over at his bracelets which say things like “Fall Risk”

I am 56 years old, and forgot to get my medical degree. 

I am a Bad Nurse. 

My crochet skills amount to the friendship bracelet  level….

By the time we are officially discharged from the hospital, we had three separate breakouts.

The first one was ridiculously frightening and guilt inducing.

The second time got a little easier. 

By the third, we were a regular Bonnie and Clyde. 

The third escape included an actual sit down meal at the lovely Oakhurst Cafe and Inn. 

Poached eggs in a wine reduction shakti mushroom sauce over asparagus anyone? 

Highly recommended on your next breakout.

(and no one seemed to mind a few wires sticking out of a t-shirt over pajama bottoms…)

When we got back from that outing, Salsa Dancing Nurse comments that we were gone for three hours and that must have been quite a walk!

“Three hours? Really? It didn’t feel that long - we better take a nap!….”

Be honey….

No one wants to be in the hospital. Unless it's floor 8 where the babies are welcomed into the world. 

The rest of us are sitting, crocheting in the family rooms waiting for a 6 1/2 surgery to be over and hear the doctor call your name and say it all went well. 

It's why there are so many touches of beauty around the place. 

A baby grand piano in the lobby. 

Beautiful art, pottery, fresh flowers in tall vases and sculptures on display. 

We need to wrap ourselves in beauty in the face of sickness and possible death. 

There's always pie. 

Thank you dinning people for the pie. 

When I look back at my seven day stay there, (and because I chose to focus on the positive)

I think a lot of people there were.... 

Being honey. 

And, I'm truly thankful for the good, sweet people who chose honey over vinegar.