Avery's Story
2:27 PM | 
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Team A {Squared}
Other than her early onset asthma, reflux, and peanut allergy, Avery was just like other babies her age. She loved to take walks, ride in her "little car," read stories and play in swings. One of her favorite things to do in the Spring was to take walks and pick "flowies."
Our little first born Princess would demand that you stop the stroller. She'd then jump out and run over to the dandelions. She would then say, in her sweet 1 year old voice, "Flowie. Help ping." Avery tried to pick as many as she could. By the time we finished our walk, she'd have a full bouquet of dandelions.
In late April of 2008, we noticed a change in Avery. She became a lot more clingy, wanted to be carried around constantly, and would lay on the floor and just cry. She stopped "reading" her books by herself. At first I just thought she wasn't adjusting well to Mama's pregnancy (I was 5 months pregnant with our son at the time.) But it just continued to get worse. The most haunting thing about that period was how silent our walks became. We would pass by fields of dandelions, but Avery wouldn't even turn her head in their direction.
Here she sits on the floor, as she did most days during the weeks leading up to the diagnosis. Note the distant look in her eyes & the complete reflection of the flash in her pupils. That absence of red reflex is a direct result of the cataracts.
It wasn't until she started holding books right up to her face and regressed to crawling that we took her to see an opthomologist. We hoped against hope that it would be just a behavior issue, but deep down we knew it was a vision problem. That feeling certainly didn't dampen the sting of the words, "your daughter is essentially blind." She had bilateral, fully oppacified cataracts. She could only distinguish between light and dark. Like looking through a window that had white paint all over it.
Despite having had tubes placed in both ears a week prior, Avery was scheduled for her first of 2 surgeries quickly. Her right eye lens extraction would be the following week, followed two weeks later by the same surgery on the left eye. The plan was to implant an artificial lens at the time of surgery. This would avoid the need to wear thick cataract glasses, although glasses would always be essential for her from now on.
After over 3 hours of waiting, the telephone in the surgery waiting room finally rang for us. We were told that, despite their best efforts, they could not safely implant the synthetic lens. We were heartbroken...and we still had at least one more surgery to go. But we didn't know the worst was yet to come. For an entire summer, we had to hold Avery down and put drops in her eyes 4 times a day. We felt like we were torturing her, yet it was for her own good. It was hell. Sitting on her stomach, holding down flailing arms and legs we'd hear the most treasured thing in our life screaming out "All done, all done!"
For the first 3 days post-op, Avery wouldn't let us put her down. She even slept on our laps. Her Mimi was able to come up from Birmingham, AL to help Avery (and us) get through this surgery and the immediate aftermath. Her Yaya and Papa visited after that to lend a hand. For the most part though, we were utterly alone. We live in St. Louis, 10 hours away from "home" while my husband completes a 6-year surgery residency...during this time it really hit hard how important family is. Brian, Avery and I struggled daily; we also learned the hard way who our true friends are. I'm immensely grateful for the angels I've met here in St. Louis: Maggi, Sara, Billie, and Jody, I'll never be able to thank you enough.
Because she had no lens to focus the light on the back of the eye called the retnia, light entered Avery's eye and bounced everywhere, causing casual activities of everyday living to be extremely bright and painful. She spent the majority of her days inside, listening to music on her CD player. Despite it all, she continued to try to be a toddler and test Mommy's boundaries. It's unbelievabley hard to discipline somebody so adorable, particularly with that giant patch on her eye! Avery got away with a lot that summer :-)
We did everything we could to improve her life that summer. We got huge balloons that she might be able to see, danced to music whenever she felt the urge, sold furniture to clear rooms for her to run with her beloved "stewy" (stroller, which she used as a sort of walker to prevent her from running into things) and even got a patch for her babydoll.
Two weeks after the first surgery, the other eye was done and the eye drop regimen started anew. As time passed, avery was able to venture outdoors, but was still hurt by bright light. We still tried to go outside, but just ventured out in early morning and early evenings. Despite being legally blind, Avery's spirit refused to be held down. We took her to smaller & less frequented parks so that she could move about slowly. She quickly memorized the layout of the park and soon was climbing, swinging & sliding, though not to the degree of her peers.
Finally, the day came to get Avery fitted for cataract glasses. During that waiting period, Avery got to the point where the patch was no longer required. So, she exchanged it for a cool set of shades. She wore them almost full time, often accessorizing with a stylish hat, and occasionally even sleeping in them.
Now approaching the end of June, like any parent would do, we began to think and plan for her 2nd birthday. We hoped she would have her glasses by her 2nd birthday party. Sadly, she wouldn't get those babies until almost 2 months later. That didn't stop her from being a birthday princess!
When the glasses were finally ready, we began the next battle... getting her to wear them! At first, she was scared of them. Slowly but surely though, she learned how much brighter her world was with these glasses, and we couldn't get her to take them off. She sleeps in them to this day. Initally we tried to make her take them off at night, but that first time she woke up screaming "I'm scared, I can't see!" we cracked. The first place we took her was Grant's farm to see the petting zoo. She was very amused by the goats!
Contrary to popular belief, having cataract glasses did not mean Avery was "fixed." Those of you who wear glasses know that your vision may be perfect when you look directly through your lenses, but sight below, above, or peripherally is compromised. Avery continued to have issues with depth, mobility, perception, as well as the delays I have mentioned earlier. But fortunately for us, that's where Delta Gamma therapists came in to help. Although I will get to that another day...THIS blog has gone on long enough!
Meet 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.