My Phoenix

by Sally Haldorson

 
Before he was born, each moment
simmered down so simply to:
happy, sad.
Now I am neither. Never
one nor the other.
Now a smothering haze has

Settled, an eclipse descended,
his sweet white light cloaked,
and I rummage, blind,
through piles of emotions, sinkholes
of scraps, notes on a broken heart,
searching for the up-
side of this sad, unfair scenario.

The world turned grey. No
bright colors any more for us,
lives whittled down.
Unmet expectations shaved off in wormlike
curls. Lost dreams drop
off behind us like so much
debris in ditches.

Now my back bends.
My belly scrapes the ground.
I am loaded like
a beast of burden. 
And I am tired
of sorting feelings
into orderly bins:
hope   love   disappointment.

One day, long
after he should, he points
To an apple, red and round
on a white page.

There, oh there.
Like a mouse burrowing
beneath fall leaves, like a faint voice
whispering from beneath rubble, hope stirs.
And like a pale green sprout, slow
in its uncoiling, Noah unfolds.
And suddenly I believe…

Some day he will learn
his letters, his numbers, his name.
And with new-colt legs, he will
run with friends, run from me.
From my arms that have carried
him too long.
He will run,
And I will be the first mother
To cheer, to say:
Go, my son, grow up too fast.
Like they all said you would.
Please do. Go.   Go.   Go.

Continue reading "My Phoenix" »

Broken

by Holly Thompson

Anna lays broken
In a post-ictal slumber
I am broken too

Ode to the Red Hair Gene

by Deirdre Gillin

Flames lick the aura of your head,       
Tasting the perfectly shaped crown,
Edging the rim of a high, pale, curious brow.
Feathery gilded fuzz plays on the nape
of your neck.
A one in four chance,
captivatingly vibrant
in russet red.

Strangers marvel at thick tussled locks glinting greetings,
A welcome gene here, shunned
on the rain drenched fields of Hibernia.
Thor’s gift,
shrouded in the inherited memory of
a Viking ship come to pillage.

Grace spreads over freckled cheeks,
red’s constant companion.
Sun-hued strands, yawn
beneath the folds of your bright, happy quilt,
followed by eyes fringed with arched lashes,
like curling black fingers winking their auburn tips.

Recessive yet,
resilient to withstand a thousand years
of genetic splash.       
A one in four chance come true.

Finding Answers

by Clara-Leigh Evans

Our son born to us was so normal
so sweet and so welcome.
He wrapped me around a finger,
no, all ten of them.
Then the charts began to miss him.
The milestones flew by.

What's wrong? Why him? Do we have time?
But he is so perfect.

Tests, pokes, prods.
The same endless questions.
No answers.

What's wrong? Why him? Do we have time?
But he is so perfect.

Our son now with a tube inserted to get nutrition,
a scar on his thigh for biopsy.
Still no answers as we leave the safety of the hospitals.
Driving home empty, wanting answers.


What's wrong? Why him? Do we have time?
But he is still so perfect.

Therapies by the hours in our home
and away.
Swimming, horses, more therapies.
Appointments, worry, wonder.
We almost miss seeing him, enjoying him
through all the commotion.

And now we know what's wrong and it's not that bad.
He has it, but it does not have him.
We have only the time we can grasp right now anyway, so we love it.
And he is even more perfect than ever.
 
Regarding Garrett, age 2 years, CFTD muscular disorder diagnosed 1/07

Giggles

by Aisling Neville

A hug and a kiss
a belly laugh that warms the heart
giggles and giggles
and more giggles.

Pulling that hair clip out for pure impishness
wanting one more back rub
challenging your every patience
and even more giggles.

"Round and round the garden"
wanting more tickles
crossing eyes 'cause she can
and who can forget the giggles.

Pride of accomplishment
challenges and frustrations
crying, tantrums and head banging
but of course giggles.

Love, of that I am sure,
no speaking is necessary
mother and daughter
and....giggles.

For my daughter Madison
XXOOXX

Dearest, My Apologies

by Deirdre Gillin

Dearest,
My apologies.

It was no accident you chose me,
We were the same, raging
in a world that blinked
indifference.

A fresh soul delivered from your
warm emersion into
sensory terror.
Your brain already fighting its mismatched puzzle.
Neurons bouncing like beads clicking against the floor.

Images of warm deep embraces-edged
into the distance.
Childhood pleasures morphed into sensory diets,
play therapies,
mood stabilizers.

No Parenting magazine knew you.

Five years besieged
by a mind brimming
confusion.
Wide black eyes glazed,
never willing to meet my gaze.

No immediacy of love,
It stood in the middle distance
trepidacious, edging silently forward,
a little,
at a time.

Until the day we heard that gentle porcelain doctor say
“autism spectrum.”

There you stood, and I saw you
for the first time
looking right at me.

_______________________________________________

TO VIEW MORE POETRY, CLICK THIS CATEGORY UNDER "ENTER THE SALON" LOCATED IN THE RIGHT SIDEBAR....

 

I Have A Son

by Randi Robson


I have a son Sam, he is 3. He has Speech and Language Delay.


I have a son Sam, he is 5. He has Speech and Language Delay with a possible Mood Disorder.

 

I have a son Sam, he is 7. He has Speech and Language Delay, Expressive/Receptive Language Disorder, ADHD, Tic Disorder NOS, with an underlying Mood Disorder.

 

I have a son Sam, he is 9. He has Multiple Disabilities. He has ADHD, ODD, Mood Disorder NOS, and PDD NOS.

 

I have a son Sam, he is 14. He has PDD NOS with Asberger’s, ADHD, LD, and a Mood Disorder.

 

I HAVE A SON SAM....

80 Degrees in March in Minnesota

by Renee Walbert

80 degrees in March? In Minnesota?
Unthinkable.

I grab Dad and spring him from the nursing home. From the joint.
Let’s blow this pop stand!

Convertible top down, we drive to the old home. See a neighbor. See the town.
What day is today?
It’s Monday dad.
Do I have an appointment today?
No, that’s tomorrow.

Drive to Cal’s market, but it’s too early for produce. They are just getting their gardening supplies out and ready to sell. Getting ready for Spring. Ready for Summer.
But it’s warm! It feels like summer.

Ah
Drive to Dairy Queen. He can’t get out of the car so we go through the drive thru.
Two small cones to go please.

Eating DQ while driving with the top down

80 degrees in March, In Minnesota?
Unheard of.
What day is today?
It’s Monday Dad
Do I have an appointment today?
No that’s tomorrow

Drive to the River. Drive by my old schools.
Think about driving to his old neighborhood. But no, he’ll fuss about the change, about his perception of crime, about how far it is, about…
No, stay with the near by.
Dad, did you ever own a convertible?
No but my friend did. I remember we drove it with the top down in the winter. We were taking it to be fixed, but people thought we were crazy. A convertible in Minnesota, in the winter.

Boy is it nice today
80 degrees in March, in Minnesota?
Unbelievable
What day is today?
It’s Monday Dad
Do I have an appointment today?
…No…
Just today. In the car. With the top down.  80 degrees.
________________________________________________________

My elderly father is on hospice care now and this sandwich generation stuff is even harder when you (1) live 900 miles away and (2) have family members with special needs.

Untitled

by Stephanie Schrader

Seizures steal my son
Medication steals my son
We cannot win here.

I Am Able: Karuna's 4th Birthday Song

by Susan Agrawal

[Song originally scored for voice, piano, 2 violins, cello, guitar, bass, and percussion]

[verse 1]
Why do they only see my difference,
And my wheelchair, never me.
And some, all they feel is pity,
Never hope, why can't they see?

[chorus]
I am able
I am able
More than a helping hand
I need to know I can.
I am able
I am able
Please don't hold me back
It's not the will I lack.
I am able.

[verse 2]
Please, forget my disability,
Look at me, see my soul.
And please, don't neglect what I can do,
I'm not broken, I am whole.

[repeat chorus]

[bridge]
I can cry, I can dream,
I can sing, I can scream.
I can love, I can walk,
I can smile, I can talk.
All it takes is technology
And a little creativity.
I can dance, I can give,
I can hope, I can live.

[repeat chorus]

[ending]
Please don't hold me back
It's not the will I lack.
I am able
I am able
I am able.


Vocal and piano arrangement: http://www.karuna.agrawalkids.com/Iamable.pdf