there is always...

hope is the sparkle
from the depths of the hole

hope is the candle
you light in your soul

hope is the glimmer
you sense in your being

hope is the jewel
so brilliant and freeing


© Sandie L. Davis

Cherished Moments...

Today I was sitting quietly in another room
in our home when I heard laughter and the
everyday goings on of playfulness taking
place between my husband and our child in our
child's room.

But then my attention was completely captured when
I heard the voice of my husband saying to his child...


"I have this little boy...he's so sweet
I think he's made out of candy."


and Matthew giggles filled the room and my heart
danced with pure, sweet joy.

I am forever blessed and touched to have heard that
and I am so thankful for my loving husband and our
"sweet as candy" child, Matthew.

Sunset Thoughts

Sunset Thoughts


Reflections in the water
peace upon the sky.

Put all your cares and worries
on waves of lullaby.

Illuminate your blessings
ponder them with love...

Sealed with a sunset
from God in heaven above.


© Sandie L. Davis 2010

Photo of the beach in Lincoln City, Oregon

Advocate Dance

When my baby was four months old
ACC is what I was told.

I was in a state of trance
but very quickly took a stance.

Medical insurance would not pay
for any therapy in any way.

I put on my advocate pants
and I did the Advocate Dance!

Whatever it took I would do
and they would pay, that I knew.

They may have denied his medical care
for absurd reasons that flew through the air.

But I didn't give them a second glance
I kept right on doing the advocate dance.

Physical therapy for my baby began
despite denial by our medical plan.

Letters exchanged and phone calls made
I wouldn't settle until they paid.

Out of pocket we did pay
until that final victory day.

And once upon an advocate time
the insurance paid back every dime.

© Sandie L. Davis 6-2-2010


That is a true story and it really happened
to us when my child, Matthew, who has agenesis
of the corpus callosum, was a baby.

There were many other bumps in the road and
closed doors over the years with medical insurance
and other areas.

However, when you are dealing with matters of
the heart and it concerns your child and
his/her best interest, you find the drive and
determination within you to steamroll those
bumpy places smooth and roll right through the
closed door denials.

Don't ever give up.

You are your child's very best advocate in
the whole world.

Finding the Answer....

Last summer I was standing at my sliding glass
door looking out into my backyard when I spotted
a lemon yellow, very out of the ordinary bird
at the top of my plum tree.

I stood in awe gazing from inside my house at the
beautiful birds (there was actually a pair of them).

I was torn to run and get my camera yet did not
want to miss one second of seeing them with my
eyes.

Do I run?

What if I run to get the camera and the birds
fly off?

Gazing at the birds sitting on branches in the
plum tree, primping...then moving to other
branches was amazing.

And I was alone with nobody to tell or say...

'Hey look at those YELLOW birds in the plum tree.

'Have you ever seen a bird like it?'

Ohhhh, I needed a picture.

So off I RAN to the other room to grab my camera
out of the drawer...............

running back to my perch at the sliding glass door.

Ahhh, there they were.

Two yellow birds complete with red heads and
black wings.

STILL IN MY PLUM TREE.

I had time to snap about three quick pictures
through the glass door (not daring to open the
door lest I scare the birds off).

Then like butterflies in flight...the pair of
lemon beauties floated off through the sky out
of my sight.

I wondered for days what kind of birds they were.

I was on a mission.

I searched the internet.

I talked about the birds and told my family all
about them.

Unfortunately, I could not figure out what kind
of birds they were.

Eventually I stopped trying and no longer thought
about it.

That was a year ago.

Last week my sister came over for a visit and she
gave me a surprise gift certificate to a favorite
store of ours.

I was really looking forward to using the gift
certificate and wondered what I could buy with it.

So later that night I went online and looked
up the store.

The store website came up but before I could
browse through more than a few clicks I saw a
picture of a yellow bird SO SIMILAR to the pair
of birds in my plum tree last year.

The excitement began!!

I just had to explore it more so I clicked on the
picture of the bird. Upon a closer view it looked
nearly the same but it didn't have a red head.

I kept clicking on the other pictures of yellow
birds.....because now that I had gotten so close
I was determined to find out what kind of bird
was in my backyard.

Then there it was!

I found it!!

The lucky lemon yellow beauty appeared before my
eyes and finally

(after one year)

I had an answer:

The bird was a Western Tanager:



Now you may wonder why I am posting this story on
the ACC blog but I assure you there is a message
here.

After having finally found the name of the exquisite,
unusual yellow birds that I was privileged to see in
my own backyard, I realized how similar it is to
finding ways to teach my child, Matthew, who has ACC.

There are times when I have tried and tried to figure
out how to teach Matthew something but no matter
how much I try the answer doesn't come.

But after I put the goal on the backburner and
move on to other things, when I least expect it,
(often months or more later) and much to my surprise
I realize that he learned the very thing that I
had been trying to teach him earlier.

We had simply stumbled upon the teaching method
without even trying while doing other things.

It just appeared as easily as can be and flowed like
a river.

Of course we parents of kids who have Agenesis of
the Corpus Callosum realize that there is a big
variety of scenarios for how to teach our kids the
MANY things that they are working on learning.

I am convinced though that sometimes there are
those times when we simply put it on the backburner,
move on to the next thing and let the natural flow
of life and learning take place.

The Uncertain Road...

While browsing through the archives of an
Agenesis Corpus Callosum support group that
I belong to I came across some messages that
I had written in the past about my child,
Matthew, ACC and my feelings.

I contemplated whether or not to share some
of my past personal feelings here for others
to view.

After careful consideration, I decided
to give it a go in the hopes that it might
help someone.

This particular post from the past is
something I wrote when my child was 7 1/2
years old. It was written in response to
the parent of a baby with ACC.


September 5, 2001

"I just read your e-mail and sympathize with your
frustration and confusion. I am also a parent of
a child with complete ACC. My little boy was
diagnosed with ACC when he was four months old.
I was beginning to question his development before
he was diagnosed just a little bit. I remember
asking some of my friends about when their kids
rolled over because Mathew was not yet even
beginning to come close to rolling over....but I
never imgained that he would have this rare and
baffling condition when his pediatrician ordered
a CT scan. It was shocking and needless to say...
my world turned upside down.

You wrote something that I think every one of
us parents can relate to....

"Wait and see what is gonna happen.
You know it really makes me
crazy knowing that everything
could be okay ---- but no, wait ----
he could have major problems."

I am quite sure that most every parent wishes
that there was some magical type of test that
could reveal EXACTLY what they could expect in
terms of how ACC will affect their child.

When Matthew had his first EEG to rule out any
seizure activity and the results were negative
indicating that he did not show any signs of
abnormal brain activity or seizures I felt
relieved...and THEN...I was told that he is still
at risk for seizures happening so it was like the
good news was once again said with the frustrating
news on top of it. For me, the wait and see,
the wondering, the unanswered questions were
incredibly difficult to deal with.

In the beginning of my son's diagnosis and
numerous doctor appointments....I was also a
wreck. I did not like going to his doctor
appointments either..mostly because I did not
want to hear one more thing that was wrong
with him.

When I was at his developmental evaluation...
he was having his ears tested because ACC can
affect their hearing. I remember the doctor
coming back in the room and telling me that
they suspect hearing loss in Matthew's right ear
and INSTANTLY I thought to myself...NO WAY!! I
didn't believe it and didn't even want to hear it.
I just shut him out and wasn't going to believe
what I just heard. After testing by an (ENT)
ear, nose and throat doctor...Matthew was found
to have fluid behind his ear...which was drained
and a tube was put in his right ear only.
They did an elaborate hearing test called an
ABR (auditory brainstem response) and Matthew's
hearing tested normal in his right ear and left
ear. It was a huge relief. I was very happy to
find out such good news...and needed to hear
those good things. Those good things can so easily
be crowded out by the other not so good news.

In the beginning of Matthew's diagnosis I would
sometimes want to read and know information about
it....and then other days I didn't want to think
about it. I was apprehensive in talking to other
parents. I was so scared I would hear something
else that MIGHT happen as a result of ACC...
and it scared me. I had trouble reading about
other children who had really severe problems
who had ACC. I think everyone is different
in how they deal with the news of ACC or with
the news of any type of condition or major problem.
You will know what is right for you and you
might go through days of needing to know more
information and days of blocking it all out and
not wanting to hear, think or see anything else
about it.

I found it helpful to have a developmental
pediatrician to talk with concerning Matthew's
condition. We are lucky to live very close to a
teaching hospital in Oregon
(Oregon Health Sciences University) and they
already knew of Matthew's condition and had seen
other patients with ACC.

I have found therapy services to be a great
benefit for Matthew. I chose to put Matthew in
physical therapy when he was six months old. He
also wasn't reaching for toys yet. I began
receiving Early Intervention services through
the county and they were very helpful in showing
me ways to encourage and help him reach for toys
and other things. We would roll up towels and
put them under each of Matthew's arms while he
layed on his back. Then I had one of those baby
gyms with hanging toys and the elevating of his
arms REALLY helped in giving him a little bit
of an advantage and he began to use his arms to
reach for the toys. Early Intervention therapists
come into your home and work with the child and
there is no charge.

I think that therapy indicates that there is
some kind of problem...and admitting that there
might be or is a problem is not always easy to do.
I wanted to believe that Matthew would not be
affected by the ACC.
I went through MANY emotions....so many emotions.

The hardest part is the "wait and see"....and
while it is INCREDIBLY difficult right now....
I can tell you that it does get better with
time...it does."



Sandie

*Mommy to 7 1/2 year old Matthew with ACC in
Oregon (USA)*