Tuesday, May 12, 2009

Wait and See.......

For me, the ‘wait and see’ period was one
of the most difficult things to deal with
aside from the shock of receiving the
initial diagnosis of Agenesis of the
Corpus Callosum or a corpus callosum
disorder for your baby/child.

I remember the time after my child,
Matthew, was diagnosed with ACC as being
a very difficult time with all of the
testing going on and the lack of knowledge
about what we could expect for his future.
I think that is one of the most difficult
things in dealing with this condition--not
knowing the prognosis. It took me a very
long time to come to terms with that fact.
For me, the first year after his diagnosis
was the most difficult. I cried numerous
tears and went through many emotions.

For me, I wanted to know HOW and IF Agenesis
of the Corpus Callosum would affect my child,
Matthew. I wanted to know IF agenesis of
the corpus callosum did affect him, HOW it
would affect him. I wanted to know what I
could expect for my child. I had a million

Will he walk?
Will he talk?
Will he be in a wheelchair?
Will he…do this….will he do that?
Will he be mentally challenged…?
….the thoughts and concerns went on and on…

I asked and asked and…ASKED myself, and
his many doctors, those questions but I did
not like the answers because over and over
again it always came back to the same answer
which was…we can’t be certain yet and we
will have to...*nods already knowing*...
wait and see.

On top of it all, a wild whirlwind of
emotions threatened to rob me of the joy
that I had always dreamed of when you become
a mommy for the first time and begin that
glorious journey of motherhood and all that
it holds. Everything that I had envisioned
for what you expect when you have or adopt
a baby came to a screeching halt and I was
left to make sense of it, left to take my
baby to one doctor and specialist after
another, left to have one test after another
done, left to wait and endure the outcome of
each test result and left to try to do my best
to deal with it all, amidst tears.

There is such a huge and broad range of how
ACC and a corpus callosum disorder affects
each person diagnosed. There is no known and
definite prognosis available at this time.
Also, there is the possibility of other medical
conditions that may occur with ACC such as
chromosome anomalies, genetic syndromes,
metabolic disorders, etc.

I wanted a prognosis! I felt like having that
knowledge and understanding right then would
help me be able to deal with the tornado that
had ripped my world apart and was threatening
to steal my sanity and all that I had dreamed
of for what it would be like to raise a brand
new baby and child and for what I had
anticipated and envisioned for my child’s

Now, fifteen years later, I know the not knowing
what to expect for Matthew’s future helped me
to keep doors open to all the wonderful
possibilities of what Matthew could learn
and accomplish. Back then though it was
torture not knowing!

I am still in a wait and see period…just not
like it was in the beginning when enduring
that time was so difficult because it was so
new, so unexplained. The wait and see period
for me now is much different and much easier.

I’ve waited, often times, a very long time
to see the new things that Matthew does and
he never ceases to amaze me with all the new
skills he keeps on learning. It’s so exciting
and so thrilling to see him learn something
new!! Like the time we were in the airport
in Honolulu, Hawaii waiting for our connecting
flight to Maui and, like a lightning bolt
appearing out of a sky full of sunshine, I
heard him SAY his very first word “buh bye” …a
word we had worked and worked on for an entire
year….and he really and finally SAID it!
“buh bye” in a brilliant baby talk voice came
again and again…”buh bye”…I grabbed my cell
phone and called my mom…so excited for someone
to hear what I was actually hearing…I got her
answering machine but I put the phone up by
Matthew’s mouth for him to say it again…”buh bye”.

The Wait and See period in the beginning can be
a most unpleasant valley filled with dark clouds
of endless grief and pain or waves of both…

BUT, just you ‘Wait and See’…..all the marvelous
things that your kids will do!


  1. Oh yes "wait and see" we've heard that since Joel was first diagnosed at 16 wks gestation with hydrocephalus. That didn't come to pass. "wait and see" when they told us that Joels head would be too big for a normal delivery and he'd have to be taken early, wrong again normal vag delivery and only 6lb 11 oz.

    Now we are in the "wait and see" stage for developmental milestones. My daughter Joels Mommy is much more relaxed about the "wait and sees" she's of the opinion that we worried ourselves sick through almost her whole pregnancy and Joels birth and most of that was for naught. She feels like he'll do just fine and we'll cross each bridge as we come to it and she just enjoys his every moment!

    I on the other hand am a fretter and a worrior from way back and I have a little voice in the back of my head that's saying to me "it's not "normal" that Joel NEVER cries, it's not "normal" that he is so very happy ALL the time, he should be babbling, crawling, sitting independantly yada yada yada"

    So anyway a novel as usual but thank you for sharing your eventual acceptance of the "wait and see" and showing us that if we are patient our kids will show us just what they are capable of!

  2. Trecia,

    Thank you so much for sharing your very real feelings.

    I know that coming to terms with receiving the diagnosis of ACC is different for each person. Everyone has to figure out and deal with it in their own, unique way.

    When my child, Matthew, was first diagnosed I wanted information one day and then wanted to shut it all out the next. I thought I wanted to read and e-mail with a parent or two back then that I found online but when I began to see the intense problems some children were facing I couldn't deal with it. I had to take it one step at a time with Matthew while continuing to work with his team of doctors and specialists.

    It was also suspected in utero that Matthew may possibly have hydrocephalus because a ventricle in his brain was what the doctors called normal to borderline in terms of being enlarged. I have since learned from talking with other parents who have a child with ACC that that very same thing has been suspected with their children as well. Some babies and children with ACC do end up having a diagnosis of hydrocephalus.

    I learned from Matthew's doctors that while sometimes babies with ACC do have hydrocephalus they can also appear to have it, while in utero, because of the slightly enlarged ventricle size.

    It was explained to me by Matthew's doctors that when the corpus callosum is missing there is extra space in the brain as a result and that the ventricles can become slightly enlarged due to that extra space as if trying to fill in the space. It doesn't always mean it's hydrocephalus though and I'm so glad it wasn't in Joel's case. :)

    Like Joel, Matthew was (and still is) happy all the time. He doesn't cry...and doesn't even seem to understand it when he sees another child cry. He has been this way since he was very little. He would see a child crying and watch with curiousity, then turn to look at me as if to say...huh? I would try to explain it to him and why the child was crying but he didn't seem to understand it. I don't think he understands even today when someone cries. Actually, if he ever sees or hears me cry, he will start laughing. It's kind of funny though because I will be crying but kind of laughing a little.

    If Matthew ever cries, I know that something is VERY wrong.

    He didn't really cry as a baby either. Well, except for when he had colic and then he grew out of that and just did NOT cry.

    Thank you again for your openess and willingness to share. :)



I am very interested in reading your comments and
look forward to hearing from you. Thank you.