little four eyes

As we come to the end of January, which this year is Glaucoma Awareness Month, I wanted to post a few resources for families who are dealing with pediatric glaucoma.

Glaucoma is a leading cause of blindness, and while older people are more at risk, glaucoma can occur at any age.  Pediatric or Childhood Glaucoma may be congenital (1 in 10,000 babies in the US are born with glaucoma) or may develop later in childhood.  Glaucoma is also closely associated with cataracts, children who have cataract surgery are at higher risk of developing glaucoma, and so are often closely monitored.  Some symptoms of childhood glaucoma include light sensitivity (photophobia), corneal opacification (hazy gray cornea), enlarged eye and cornea, epiphora (overflow of tears), and vision loss. (Information is from the Pediatric Glaucoma and Cataract Family Association, and the Glaucoma Research Foundation).

You can find more information about pediatric glaucoma and support support for those dealing with it here:

• Congenital Glaucoma Network - this is a social network for all people affected by childhood glaucoma come to share their story.  There is a forum, blogs, a place to share photos, videos, and links to more resources.
• Pediatric Glaucoma – information on pediatric glaucoma from the Pediatric Cataracts & Glaucoma Family Association.  You may also want to check their Knowledgebase for more articles on glaucoma.
• Children’s Glaucoma Foundation – a non-profit dedicated to supporting children with glaucoma.
• Childhood Glaucoma – symptoms, treatment options, and stories about childhood glaucoma.  From the Glaucoma Research Foundation.

You can also read other posts on Little Four Eyes that deal with glaucoma.

If I’m missing anything, please let me know!

January is Glaucoma Awareness month.  I hope to feature stories this months about children with glaucoma.  Amanda was kind enough to share this post that she wrote for her son, that was originally published on her blog See the Distance. – Ann Z

My son, Easton was born with a severely cloudy Cataract in his left eye.  At 3 weeks old he had surgery to remove the Cataract and his Lens.  It was after the surgery that we then discovered the Cataract was just a symptom of his overall abnormal eye.  He was diagnosed with Persistent Fetal Vasculature.  Along with abnormal eye structures and a cataract, his eye also is at very high risk of reoccurring Glaucoma for the rest of his life.  In order to maintain function and attempt to restore vision in his eye,  he has been wearing a contact lens since healing from the surgery and wears a patch over his “good” eye approximately half of his wake time, 6 hours.  He is currently 15 months old and it most definitely has been quite a journey getting to this point.  We recently found out that his Glaucoma has flared up and are in the middle of a battle with it right now.  Reading the blogs of other parents in similar situations is so comforting to me.  As a result I began blogging our journey approximately 6 months ago and it has helped immensely just to get it all out.  As this New Year begins I wanted to share one of my most popular posts as a way of reaching out and giving back to a community who has given so much to me.

This post was actually written Sunday, October 16, 2011… but it still rings true for me everyday.

Dear Easton…

My baby
My boy
I love you
so much
beyond what words
can express.

You are fearless.
You are full.
You are endless.
You are endearing.

You can do this.
There are so many days
when you make it
look easy.

But I know
you know
that there is a
harsh
cold
reality
to the days
that arn’t easy.

Every morning
Every moment
starts
and ends
with
the eye.

The eye
that can see
that is covered up
that wears a sticker
that bends your eyelashes down
that irritates
that itches
that rips your skin when removed,
that eye
is precious.

The eye
that can’t see
that is pulled open
that is poked
that is rubbed
that is wearing a contact
that is learning
that is growing,
that eye
is seeing.

I am sorry.
I am so sorry.
That you have to
endure.

I am sorry.
I am so sorry.
That nothing about this
is easy.

I am sorry.
I am so sorry.
That your vision
comes with a price.

But Baby.
My sweet
loving
lauging
little boy,
Mommy loves
you.

I love you
so much
that I will do this
for you.

I will continue
to wake up
everyday
and do this
for you.

Balance
Strength
Endurance

Easton,
Mommy is doing
the best she can.
I am trying.
I am sorry, baby.
I love you.

And when we have
bad days
you have to know this,
I do this
because
I love you.

Someday
we will look back
and I pray
all this is worth it.
Because you deserve
a chance
at the very least
you deserve
a chance
to have the best
possible
vision.

I love you.
I am so proud
of you.
Keep seeing the distance baby.
See the Distance.