Monday, September 29, 2008


Do you know what that is?

<- the link doesn't tell you a whole lot does it? :)

I didn't either, till I was told the word during an evaluation we went to for a new "school" mommy and me class for kids like William.

It started (or I noticed it Yesterday, and today Courtney noticed it too.) Told Rob about it and he said, "Oh yeah, I've seen that."

It looks rather freaky, and almost like it could be seizure like, but it doesn't look like a seizure at all. His eye *shakes* as he tries to focus on an object.

Paged the neurologist after I was given the "word" for it, the on-call neurologist called back and said we likely need to be seen since it's new, but that it's likely a result of his injury, and it can be caused by medication, but not any that he is on, so we don't need to do anything right away, but he will let our doctor know and they will call us to setup an appointment to take a look.

All in all you had one freaking out mother on your hand, so I called my be all end all medical reference, ok the local radiologist in the family ;) (Love you Jason! **Really I do**) He was nice explaining to me how some adults don't even realize they have this, and that it's just evidince of his injury show up now that his eyes are beginning to work, and their may be other things like this in the first few years as we really see the brain starting to work. He didn't know how it specifically affected a pediatric case, but it was really nice to have his reassurance that my kids at least not going to be blind, and that this could be completely normal for William.


Curdie said...

There was a guy at UTD whose eyes shook back and forth rapidly. I can't remember his name. Chris, maybe?? He was a friend of Les and Steve, I think. said...

I am glad you got some good answers

Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."