AVERY'S JOURNEY

What God could have prevented with His power, He allowed in His wisdom.

Here are a few things I've drawn some inspiration from along this journey...

      My Angel                

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this ...
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy.
All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around ... and you begin to notice that Holland has windmills ... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy ... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But … if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

To You, My Sisters
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were nant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and pschylogy.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.

We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Some Mothers Get Babies With Something More...

My friend is expecting her first child. People keep asking
what she wants. She smiles demurely, shakes her head and
gives the answer mothers have given throughout the ages of
time. She says it doesn't matter whether it's a boy or a girl.
She just wants it to have ten fingers and ten toes. Of course,
that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every
mother wants a perfectly healthy baby with a round head,
rosebud lips, button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity
the Gerber baby for being flat-out ugly. Every mother wants
a baby that will roll over, sit up and take those first steps
right on schedule. Every mother wants a baby that can see,
hear, run, jump and fire neurons by the billions. She wants a
kid that can smack the ball out of the park and do toe points
that are the envy of the entire ballet class. Call it greed if
you want, but we mothers want what we want.

Some mothers get babies with something more. Some
mothers get babies with conditions they can't pronounce, a
spine that didn't fuse, a missing chromosome or a palette
that didn't close. Most of those mothers can remember the
time, the place, the shoes they were wearing and the color of
the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like
recess in the fourth grade when you didn't see the kick ball
coming and it knocked the wind clean out of you. Some
mothers leave the hospital with a healthy bundle, then,
months, even years later, take him in for a routine visit, or
schedule her for a well check, and crash head first into a
brick wall as they bear the brunt of devastating news. It
can't be possible! That doesn't run in our family. Can this
really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing
finely sculpted bodies. It's not a lust thing; it's a wondrous thing.
The athletes appear as specimens without flaw - rippling
muscles with nary an ounce of flab or fat, virtual
powerhouses of strength with lungs and limbs working in
perfect harmony. Then the athlete walks over to a tote bag,
rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a
third knee surgery, or on a trip home from an echo
cardiogram, there's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or
maybe it will be unseen, quietly treated with trips to the
doctor, medication or surgery. The health problems our
children have experienced have been minimal and
manageable, so I watch with keen interest and great
admiration the mothers of children with serious disabilities,
and wonder how they do it. Frankly, sometimes you mothers
scare me. How you lift that child in and out of a wheelchair
20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred
specialists yammering in your ear.

I wonder how you endure
 the platitudes and well-intentioned souls
explaining how God is at work when you've occasionally
questioned if God is on strike. I even wonder how you
endure schmaltzy pieces like this one saluting you,
painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer
for this. You didn't jump up and down in the motherhood
line yelling, "Choose me, God! Choose me! I've got what it
takes."

You're a woman who doesn't have time to step back and put
things in perspective, so, please, let me do it for you. From
where I sit, you're way ahead of the pack. You've developed
the strength of a draft horse while holding onto the delicacy
of a daffodil. You have a heart that melts like chocolate in a
glove box in July, carefully counter-balanced against the
stubbornness of an Ozark mule. You can be warm and
tender one minute, and when circumstances require intense
and aggressive the next. You are the mother, advocate and
protector of a child with a disability. You're a neighbor, a
friend, a stranger I pass at the mall. You're the woman I sit
next to at church, my cousin and my sister-in-law. You're a
woman who wanted ten fingers and ten toes, and got
something more.

You're a wonder.

"Special Child"

You aren't like other children,
And God was well aware
You'd need a caring family
With love enough to share.
And so He sent you to us
And much to our surprise
You haven't been a challenge
But a blessing in disguise.
Your winning smiles and laughter
The pleasures you impart
Far outweigh your special needs
And melt the coldest heart.
We're proud that we've been chosen
To help you learn and grow
The joy you have brought to us
Is more than you can know.
A precious gift from Heaven
A treasure from above
A child who's taught us many things
But, most of all, "True Love."

Unknown Author