Tuesday, January 29, 2019

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.

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....

Tuesday, November 27, 2018

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...

Saturday, August 4, 2018

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. :)

Tuesday, July 3, 2018

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.

Monday, January 1, 2018

Dear 2018

Dear 2018,


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."

Saturday, July 30, 2016

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.

Sunday, January 31, 2016

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.:)