Welcome to the Team Avery Website!

In the spring of 2008 my then 19-month old daughter Avery lost most of her sight to congenital cataracts.
The Delta Gamma Center for Visual Impairments in St. Louis was there for our family in our greatest time of need; teaching us how to alter our lives to incorporate a visually impaired child. To help them continue helping other families like us, we have formed Team Avery/ Team Margaret. ***To read about Avery's story, go to the Archives and visit Blog "Avery's Story" from January 24th, 2010.
Saturday, January 23, 2010

Meet Avery

In future blogs I will show you all about my little girl and her years of struggle. Right now, though, meet our Avery:

This is one of the very few times you will see Avery without her glasses. She only takes them off for baths; in this clip she had just gotten out and was getting ready for bed. She even wears her glasses while sleeping at night! If you remove her glasses she screams "My eyes fell out! I can't see!" You can tell that, sight or no sight, Avery goes full speed ahead into everything she does. No fear, that girl! (Yes, that trait usually scares the heck out of me. Particularly when she slides down our stairs headfirst, but I digress).

Aside from her sight issues and other medical problems, Avery is like every other happy 3 1/2 year old. She is OBSESSED with the Disney Princess! She loves to sing, dance, and twirl like crazy; she loves to color with crayons and paint. Like most preschoolers she gets terribly annoyed with "brother," but will also go guns blazing at anyone who is mean to HER baby! She gets excited to go to preschool every afternoon...but I'd say her favorite thing in the world is "Dancing Class." This was Avery at her Christmas recital (she's the last one on the left in the pink glasses):

My favorite thing about Avery is her personality. We refer to her as our "Firecracker"...and not just because she was born on July 5th. Although her energy is absolutely EXHAUSTING, the things she says and does can tickle me to no end. For example: I was absentmindedly singing along to the Cinderella DVD playing during "quiet time" (sadly, no more naps for us). Avery shouts out "Mommy, stop singing! Cinderella wants to sing all by herself!" Another favorite Avery moment came a couple months ago. Avery wanted to snuggle with "brother," so we helped her into his crib. She hugged him and said "Auden, you are my best friend." When he fell over from the force of her hug, Avery said "Uh-Oh, you are falling in love with me, Buddy!"

I think Avery's firecracker personality is one reason she has dealt so well with her lack of sight. She is quite a stubborn little thing, and doesn't let anything stand in the way of what she wants. At times it is difficult to handle her, though as her mother I feel blessed that she has such a temperament. That fire is what has helped her battle congenital cataracts, and will continue to aid her in the future battles that will surely come her way.

An Army of Pink

Every cause seems to have a color or symbol associated with its awareness. Breast cancer awareness is symbolized by pink.  Ovarian cancer is associated with the color teal. Everyone knows that the color red symbolizes heart disease, and Autism awareness is a puzzle piece. But what color raises public awareness about pediatric visual impairment?

We don’t have a color (and really, do we need one?).  Vision is something most people take for granted, and probably don’t ever think about.  When someone from the general population has trouble seeing, the general course of action is to see an optometrist and obtain a pair of glasses. Problem solved, issue forgotten.  Sure, we’ve all heard stories about some unfortunate person who has been born sightless or gone blind…and for a moment it makes us sad.  But quickly we continue on with life. I’ll be honest and say I never gave very much thought about visual impairment.

That is, until it happened to me…or rather, to my 21-month old daughter, Avery.  As I will write about in detail later throughout this blog, my daughter began losing her sight sometime after her 18-month birthday.  The cause was something that most people consider a geriatric disease with an easy fix:  Cataracts.  However, in a baby, cataracts are much worse and have terrible implications for a child’s neurological, social, and emotional development.  With the majority of research showing that the greatest brain development takes place in the first five years of life, you can begin to understand why visual impairment at an early age is such a tragedy.

Those of you that know me have heard me sing the praises of The Delta Gamma Center for Visual Impairment here in St. Louis.  When the trauma of the diagnosis was over and the surgeries were finished, our family was left alone... clueless as to how to pick up the pieces of a life that would never be the same.  My husband and I had no idea how to help a visually impaired child, and were terrified by the thought that Avery would be never reach her potential because we were under-educated.  Thank God for the person who referred us to the DG Center.  Avery was plugged in to a system that would help her visual, neurogical, emotional, and behavioral delays; my husband and I were able to learn how to change our world to fit our daughter’s.  Most importantly, the entire family was given a place where we felt we belonged.

While I won’t go as far as to say my daughter is “lucky” to have congenital cataracts,  I will tell you that she is much more blessed than many of the kids at the Delta Gamma Center.  Avery is fortunate to possess hope for better vision; she wears cataract glasses that help her vision and will have future surgeries to attempt to improve her sight much more.  But many of these kids have a kind of cortical impairment that cannot be reversed. Essentially this means they will not improve with surgery or glasses, and for many that means a life of blindness.  At Delta Gamma we have made friends whose children, infants through preteens, have stories that would break your heart. Beautiful, lovable kids who just drew the short straw.  In so many of their situations, the visual impairment is not even their primary medical issue….just another struggle they must deal with.

For these kids and for my beloved Avery, I created Team Avery.  Last year through the contributions of our amazing friends and family, we raised over $3,500 for the Delta Gamma Center for Children with Visual Impairments. Can we beat that this year?  It’s a challenge, but I'm a girl who loves challenges.

This will be Team Avery’s second year in the Delta Gamma Center’s Run for Sight.  Last year there were only four of us running on a beautiful morning in May - and I KNOW we can do better this year. You can run, you can walk, you can stand on the sidelines and eat LaMar's doughnuts… just sign up, don your pink team shirt, and become a part of the Team Avery Army!

So back to my original question.  What is the color of pediatric visual impairment awareness?  This year it’s going to be pink; specifically, “Team Avery Pink.” Why pink?  Because it’s Avery’s favorite color, of course.