A Rainy Morning

by Ted Kooser

A young woman in a wheelchair,
wearing a black nylon poncho spattered with rain,
is pushing herself through the morning.
You have seen how pianists
sometimes bend forward to strike the keys,
then lift their hands, draw back to rest,
then lean again to strike just as the chord fades.
Such is the way this woman
strikes at the wheels, then lifts her long white fingers,
letting them float, then bends again to strike
just as the chair slows, as if into a silence.
So expertly she plays the chords
of this difficult music she has mastered,
her wet face beautiful in its concentration,
while the wind turns the pages of rain.

Ashley Lauren Fisher

http://youtu.be/R7HM5SKlDWo

Quote of the Day

Now if you know what you're worth then go out and get what you're worth; but you gotta be willing to take the hits and not pointing fingers saying you aren't where you want to be because of him, or her, or anybody. Cowards do that and that's not you. You're better than that!

- Rocky Balboa

Children's Hospital Rotation

by Emily Gibson

The call came in the middle of a busy night
as we worked on a floppy baby with high fever,
a croupy toddler whose breathing squeezed and squeaked,
a pale adolescent transfusing due to leukemia bleeding.
It was an anencephalic baby just born, unexpected, unwanted
in a hospital across town, and she needed a place to die.
Our team of three puzzled how to manage a baby without a brain–
simply put her in a room, swaddled, kept warm but alone?
Hydrate her with a dropper of water to moisten her mouth?
Offer her a taste of milk?
She arrived by ambulance, the somber attendants
leaving quickly, unnerved by her mewing cries.
I took the wrapped bundle and peeled away the layers
to find a plump full term baby, her hands gripping, arms waving
once freed; just another newborn until I pulled off her stocking cap
and looked into an empty crater — only a brainstem lumped at the base.
Neither textbook pictures nor cruel jokes about frog babies had prepared me
for the wholeness, the holiness of this living, breathing child.
Her forehead quit above the eyebrows with the entire skull missing,
tufts of soft brown hair fringed her perfect ears, around the back of her neck.
Her eyelids puffy, squinting tight, seemingly too big
above a button nose and rosebud pink lips.
She squirmed under my fingers, her muscles strong, breaths coming steady
despite no awareness of light or touch or noise.
Yet she cried in little whimpers, mouth working, seeking,
lips tentatively gripping my fingertip. A bottle warmed,
nipple offered, a tentative suck allowing tiny flow,
then, amazing, a gurgling swallow.
Returning every two hours, more for me than for her, I picked her up
to smell the salty sweet scent of amnion still on her skin as she grew dusky.
Her breathing weakened, her muscles loosened, giving up her grip
on a world she would never see or hear or feel to behold
something far more glorious, as I gazed
into her emptiness, waiting to be filled.

HOPE

I have been quietly avoiding this Hope thing "hoping" it would pass me by but a friend called me out so here goes . . .

Everyone suffers to some degree in this life. I realize that. But in the past few years I have come to have a whole new understanding of suffering.

Married at 22, my dear wife of now 20 years and I struggled, and struggled, and struggled . . . always delaying children until we felt we were more financially secure. After 14 years of marriage, we both finally had decent paying jobs (mine in the Real Estate industry). We bought a fixer-upper, an SUV and a convertible Mini-Cooper. We had "the talk" and decided, "Yeah, kids".

I distinctly remember driving to work and "Worlds Apart" by Jars of Clay was on the ipod. I prayed the song; "God if I am not in the center of your will - take my world apart". Huh - he apparently was listening.



http://youtu.be/JCezEbaMHdA

The mortgage industry collapsed, I had trouble paying the mortgage and car payments. My wife became pregnant. The doctors said our unborn daughter had a severe case of Spina Bifida and would not live more than a few hours after birth. The doctors also said my wife had ovarian cysts which might be cancerous. My cat died (true story).

I was in danger of losing my job, my house, my cars, my first child and my wife (did I mention the cat?). I became convinced I had cancer because it was one of the only travesties that had not yet befallen me. This was a situation of Jobian proportions.

To struggle for so long, to come so close, only to have it all taken by forces beyond my control. It was more than I could take. I began to have panic attacks and anxiety-fueled hallucinations.

Wonderful friends organized an extreme home make-over for our fixer-upper that was sliding into foreclosure. For all the beauty of the gesture, watching our friends sacrifice for a house we weren't sure we could hang onto added to the pressure and anxiety. I wanted to die and I set about trying to accomplish the act by eating and drinking with abandon. I didn't die. Totally. But much of me did. I gained 50+ pounds.

As it turns out my wife did not have cancer and my daughter did not die. She has become one of my inspirations. Plunged into the world of disability, I began to see a side of God that I had never seen. God had taken my world apart just as I had asked and was slowly putting me back together like a shattered Japanese Bowl. In the meantime I was putting one step in front of the other in what seemed to be utter darkness.

There have been a number of pivotal moments for me since those bad-old days that seem both very distant and yet very near. One of those moments was being invited to co-lead a weekly adult discussion group at my church. I believe that serving others by intentionally planning topics for our group has led me to deeper understandings of God, life and myself that I might not have otherwise received.

A more recent pivotal point came at a Life Rolls On event in April 2012. I love the ocean and I love being of service to others and this was the first time in my life that my physical condition (those additional 50+ pounds) hindered me from serving the way I wanted to.

I was ready for changes.

I started eating salads - a LOT of salads. I started running. A LOT (92 days and 300+ miles as of this writing). So far, 48 pounds lost (back to my college weight and none of my clothes fit anymore). Other things lost? My job and both our shiny new cars. But we kept the house and were given a couple more (less shiny) cars.

So where is the "Hope"? I have discovered hope in the utterly transforming power of suffering. God is making a new creation in me. Gone is my reliance on labels. Gone is my dogma. Gone is (some) of my judgement (still working on that one). I am seeing Christ and, as a result, life in new ways. I believe I am more loving, more real and more genuine.

The best parenting advice I have ever heard is: "Be the person you want your child to be". In fits and starts am slowly becoming that person.

God has taken my world apart and is slowly putting me back together. Through his grace I am stronger in the broken places.

Ring the bells that still can ring 
Forget your perfect offering 
There is a crack in everything 
That's how the light gets in. 

- Leonard Cohen

I watch this video and I think of my daughter's battle with her physical disability. I watch this video and I think of my battle with my own spiritual disabilities. But don't take your eyes off us.

My Annie is gonna show you . . .

I have wrastled with an alligator,

I done tustled with a whale,

I done hancuffed lightnen,

Thrown thunder in jail

I'm gonna show you how great I am.

- Muhammad Ali

A battle-tested hope is the strongest of hopes. I pray you know HOPE like I know HOPE.

We put no stumbling block in anyone’s path, so that our ministry will not be discredited. 

Rather, as servants of God we commend ourselves in every way: 

in great endurance; 

in troubles, 

hardships and distresses; 

in beatings, 

imprisonments and riots; 

in hard work, 

sleepless nights and hunger; 

in purity, 

understanding, 

patience and kindness; 

in the Holy Spirit and in sincere love; 

in truthful speech and in the power of God; 

with weapons of righteousness in the right hand and in the left; 

through glory and dishonor, 

bad report and good report; 

genuine, yet regarded as impostors; 

known, yet regarded as unknown; 

dying, and yet we live on; 

beaten, and yet not killed; 

sorrowful, yet always rejoicing; 

poor, yet making many rich; 

having nothing, and yet 

possessing everything.

- 2 Corinthians 6:3-10

Surfing 7/22

What We Value

Mark E. Smith is someone I gather great inspiration from. He has a blog in which he writes about life from the perspective of someone with a disability. I appreciated a recent post entitled No Moments Slip By. Check it out.

Teaser:

The relationships we form and the fond memories we make are what truly matters. And, when we move beyond living to impress others with our careers or material possessions, we move closer to lives of true merit, of true meaning, of true connections, where our true net worth is based on who we love and how deeply we love.

Don't Eliminate the People - Eliminate the Suffering

http://youtu.be/Eldz3uNsmv4

I'm Going to Make This Place Your Home

I love the idea of this song from a parent to their special needs kiddo:



http://youtu.be/bfRya-P4ffk


Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home


Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found


Just know you’re not alone
Cause I’m going to make this place your home


Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found


Just know you’re not alone
Cause I’m going to make this place your home

I have no words . . .

http://vimeo.com/38033654

LOVE IT

http://youtu.be/qX9FSZJu448

Quote of the Day

 "It's kind of fun to do the impossible." 

~ Walt Disney

Quote of the Day

The question isn't whether or not you are going to meet adversity but how you are going to meet it. Our responsibility is not simply shielding those we care for from adversity but preparing them to meet it well.

- Aimee Mullins

Mark Smith

Again from the Abilities Expo last Friday:

While the wife wrangled the wee one, I headed up and down the aisles checking out the booths. I turned a corner and immediately recognized one of the salesmen at a power chair booth. "Holy crap!", I thought, "I have to go get Holly".

I found the wife and said, "There is someone you want to meet". I wouldn't tell her who it was until we got there and I introduced them, "Mark Smith, this is my wife, Holly. Holly, this is Mark Smith, the man that writes the Powerchair Diaries." Holly's jaw dropped.

Mark Smith is a HUGE hero of ours. He is a single dad with CP who is raising a teenage daughter. He writes a blog about life: Fatherhood, being single, having a disability. His writing is honest, profound and enormously inspiring. If you aren't already following him, well, you should.

Mark was wonderful and kind, generous and gracious and meeting him was one of the highlights of the Expo.

Jesse Billauer

This past Friday we went to the Abilities Expo and ran into one of our heros - Jesse Billauer!:

http://youtu.be/lvFHkk_lCms

Here's a great segment on Jesse from Step Into Liquidhttp://youtu.be/Iu2QTV2k4ow: http://youtu.be/Iu2QTV2k4ow

He was kind and gracious and generous with his time. We got to take photos and he autographed a postcard for Annie.

This is one of those events that you know your wee one doesn't "get" just yet but when she sees this photo and postcard years from now there will come a moment when she will stop in her tracks and say, "Wait a minute . . . WOW!"

Lets Ride!

We went to the Abilities Expo yesterday and had a great time as usual. They had quite a selection of adaptable vehicles including one of these:

http://youtu.be/BlCRQchy158

Daddy? Pweese?

13 more years darlin' . . .

Thank You

http://youtu.be/U_RPux7-ynM

Trust Me, you want to hear this

Especially if you have a "Special Needs" child



http://youtu.be/gv4c9NHg3sQ

The "Other" Blog

Yes, there is another blog. It is a Resource Guide for parents of special needs children that I have been haphazardly working on for a while.

I recently made some updates and have been encouraged by some to post a link here on TDR in case regular readers are not aware of it.

Enjoy and I hope it is helpful!

I'm Gonna Show You

Inspiration: Powerful Beyond Measure (how great are you?) from Ben McDonald on Vimeo.