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.
Tuesday, April 26, 2011

Blessings

10:09 AM | Posted by Team A {Squared} | Edit Post

I'll admit it - I have days where I feel sorry for myself. It is embarrassing to admit that, particularly on those days when I look around and am overwhelmed by my blessings. But still, I am a flawed human. On bad days I see people with two daughters, dressed to match. I feel sad because my baby girl isn't here for me to dress like her sister. Other bad days I see perfectly behaved children; no one is licking the pavement, no one is having a tantrum because her "shoes feel wrong." I am jealous of a life with children that looks (on the surface) so easy. I have two daughters, only one of whom is living. This daughter, my precious Avery Claire, has had struggle after struggle since the day she was born. We have logged countless thousands of hours of therapy, easily spent tens of thousands of our own money on medical bills, and bounced from specialist to specialist in the hopes that someone could help our firstborn.


One of the best things, for me, that came from our involvement with the Delta Gamma Center was the realization of how lucky I truly am. When I felt angry that I had an autistic daughter who couldn't see, I would attend an event where I saw a mother with FOUR visually impaired kids...quadruplets, all in motorized wheelchairs. The visual impairment was the least of these kids' worries. When I saw a beautiful baby, her face not covered with patches or thick glasses, I would feel bad. "How unfair," I would think, "that my beautiful baby has her precious face hidden by these ugly things!" Then I would go to the DG Center, where I would see a child who wasn't wearing glasses - why? Because she was blind, and had no hope of ever being given even a little bit of sight. I'd stop dead in my tracks, hug Avery, and thank God that she was able to wear cataract glasses. Recently, I received the news that one of the DG Center's sweetest boys, 2-year old Brady, passed away from complications of a birth defect. I thought about how sad we were when we lost Beatrice, who we never knew alive, and then I thought about Brady's amazing family and the memories they made with their son. That precious boy, gone too soon. It's unbelievable how quickly your perspective can change when you are confronted by a hand much worse than the one you've been given.
What an incredible three years it has been for our family, since that Spring in 2008 when we first became acquainted with the Delta Gamma Center. Our little 20-month old went blind with cataracts, had both the lenses of her eyes surgically removed, then had a bit of sight restored by specially made cataract glasses. A month later we were blessed with the birth of our son, Auden. Then Avery was diagnosed with an Autism-Spectrum disorder, Aspergers. Therapy, therapy, more surgery and more therapy. My first marathon and then surgery for what thankfully turned out to be a benign tumor. Brian finished residency, we bought a new house and moved to Macon Georgia...without selling our house in St. Louis. Two miracles in late summer, when, on surgeries 7 and 8, Avery Claire had synthetic lenses placed and began to live her life WITHOUT GLASSES!! A miracle taken away, when our daughter Beatrice was born still at only 20 weeks gestation.


It is easy to look around you and see everything that has gone wrong. It's so incredibly easy to get down, to play the victim. But one of the things I constantly strive for is to focus on the positives, letting the negatives fuel my soul to make a difference. From the beginning, Avery never let her problems stop her. "Fearless," she's been described as being. "Spirited." She has always been a living example to me of what can happen when you ignore your disabilities. When you ignore your fear, when you don't play by the rules. I am so lucky to have learned early in life that our children can be our teachers.

After three years of fundraising for Delta Gamma, I am more aware than ever before the importance of my friends. What an incredible bunch of people I am lucky enough to know! ALL across the US - You know who you are! I have watched with joy the names of friends that I haven't seen in years pop up on Team Avery's donation pages; I have renewed friendships with old friends, I have made so many new ones.


After my final post from this year's Run for Sight, TEAM AVERY will be shutting down our website. Will this be the last of me? Doubtful - I'm thinking I may have another blog up my sleeve! But while our family will continue donating to The Delta Gamma Center for Visually Impaired Kids, and of COURSE will keep up our participation in the annual Run for Sight, from here out we are going to do it on a more private level. In our three years of fundraising, our amazing friends and family have allowed us to donate over $20,000 to the DG Center in our beloved Avery Claire's honor. I am overwhelmed, humbled, and eternally grateful to all who have so generously let us "pay it forward." Your involvement in our journey will forever be in my heart. There are no words that can ever adequately express my gratitude; what started as a way for me to work through my grief has snowballed into a legacy for Avery that brings tears to my eyes.


If you ever doubt that one person can change the world, just look at the impact made from one little girl. It's amazing what can happen with good friends, a great cause, and a little hard work. And to my sweet Avery Claire Caroline: I hope when you grow up you will realize the incredible story you have to tell. Never take what you have been given for granted; instead, look around you and see what excellence can come out of your miracle. Share your good fortune with the world. You are destined for great things, my love.

See you in The Lou this Sunday!!

Erin
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Tuesday, March 8, 2011

The Cataract Chicks

5:41 PM | Posted by Team A {Squared} | Edit Post


As you know, this year we are running under the name TEAM AVERY / TEAM MARGARET. Since you already know Avery Claire's story, I thought you should hear about our sweet friend Margaret. Margaret, as of right now, has not had as fortunate an outcome as Avery Claire. Still, she is a spicy, intelligent, beautiful little girl who doesn't let her handicap stand in her way.

This post is a special post, as Margaret is going to undergo the same surgery Avery Claire had this Fall. Much like Avery, this is a do-or-die surgery...it either works and changes life for the better, or it doesn't and everything stays the same. Please join Margaret, Avery Claire, and their parents as we try to raise money for other kids with visual impairments. You don't have to live in Missouri, you don't have to run, and you don't even have to show up...just know that your donation makes a huge impact on these children. Avery Claire has benefited from other's kindness, and now it's time for us to pay it forward. Please help us make a difference. I can tell you from personal experience that ALL our lives were improved by our involvement with the Delta Gamma Center for Kids with Visual Impairment. Above right is a picture of Avery Claire, just turned 2, trying to learn to use silverware. To the left is a picture of her now, post-surgery. It's hard to believe in miracles these days - trust me, I know - but she is a walking example of one.

Now here is Margaret's story:

Hi Friends!
I wanted to let you know about an upcoming run that means so much more to me than a little Sunday morning exercise! I know several of you have already signed up for this - THANK YOU!!!!
One week from today, my daughter's life will forever be changed. On March 15th, Margaret will have 2 surgeries: an intraocular lens implant and a glaucoma procedure. Margaret was born with cataracts and had her first surgery when she was just 2 weeks old...followed by a series of additional surgeries. Over the next several months, her problems got more serious. She developed glaucoma, strabismus, and amblyopia. Her glaucoma, the high pressure in her eye, caused the blood supply to her optic nerve to be cut off, nearly destroying the optic nerve and thus her sight. She has worn a contact lens since she was 2 weeks old, and she has been taking glaucoma medication twice a day for what feels like way too long! If all goes as planned, these surgeries will change all of that! We've been told there's not much hope for her right eye, that optic nerves don't regenerate or heal, but I refuse to give up on it. Thank God, Margaret hasn't given up on it either. She is amazing, to say the least.
You've probably known me for a while, and may not have ever heard about this, so why am I suddenly going public with Margaret's struggles??? Last year, Margaret met a little girl named Avery Claire Geary. Avery lived just down the street from us in Kirkwood, was born just hours before Margaret, and also has cataracts! The similarities don't stop there, but I'll keep this brief. Last year, Avery introduced us to the Delta Gamma Run for Sight, a fundraiser which helps so many visually impaired children right here in St. Louis. And this year, little Avery Claire and Margaret are joining forces to create TEAM AVERY/TEAM MARGARET in hopes of raising funds to allow the Delta Gamma Center to provide their critical services to St. Louis children. I know that so many of you are runners, but you don't need to be a runner to join the team! So we ask you to join our daughters in making a difference and support this wonderful organization by participating in the 5K run or 2 mile run/walk (there's also a kids' Fun Run) on Sunday, May 1, 2011 at St. Louis Union Station. All proceeds from the run go to the Delta Gamma Center for Children with Visual Impairments. For more information about the center, please visit their site at www.dgckids.org.
Below is the link to Team Avery/Team Margaret's page. You can register for the 2011 Run for Sight from the link at the bottom of the page. Remember to select Team Avery/Team Margaret when you register! I hate asking people for anything, but I don't want to leave anything out...if you'd like to make a tax deductible contribution, but not participate in the race, there's a link for that too. And if you'd rather send a donation via check to avoid processing fees, we can arrange that too!
We'd love for you to join Team Avery/Team Margaret! Will you help us make a difference?
With love,
Jenny
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Tuesday, February 22, 2011

Grief Won't Stop Me...

6:57 PM | Posted by Team A {Squared} | Edit Post


I'm going to start this entry with an enormous thank-you to each and every person who has emailed, called, stopped by, babysat, or otherwise embraced my family in the last 9 weeks. I am absolutely amazed at the outpouring of love that has come into our home. Please know that I have been struggling, but I've read your emails and they have touched my heart. At some point I intend to write back! For now, I am healing very slowly...one step forward, ten steps back.

As most people know, I was 20 weeks pregnant on Dec. 13th when I went in for a routine ultrasound. When the ultrasound tech and OB panicked at our baby's images, we were sent to Macon's perinatologist for further investigation. It wasn't even until I begged that I found out my dream came true, and I was having another girl. That dream quickly turned into a nightmare with our second ultrasound at the high-risk OB. Our daughter, Beatrice Heather, was extremely sick. She had no diaphragm, she had no lungs. All her lower body organs, such as her stomach and bowels, had migrated up where her lungs SHOULD have been...crushing her heart. At 20 weeks gestation Beatrice was in liver failure and congestive heart failure.

Since both my husband and I are in medicine, hearing those terms was terrifying. But there was one more term, and it was the one that broke our hearts: Fatal Defect. Essentially, Beatrice was dying inside me. Her odds of making it to term were 25%...when we asked if we could birth her and take her home to die, the perinatologist shook his head. "She will die when the cord is cut; we are talking seconds." It was as if time stopped. Like life stopped. I remember walking out of the office and the secretary casually said to her peer, "they won't need another appointment." That's right, because our baby was going to die.

The physician told us that we were welcome to try to take the pregnancy to 40 weeks, but that Beatrice was - had been - making me ill in the process. If she made it to full term, she would ruin my kidney, tax my heart, and cause many other nonspecific problems during the pregnancy. With heavy hearts and the recommendations from several surgeon friends, we opted to end the pregnancy. I'm not sure there are many worse things than knowing the baby kicking inside you is no longer yours. In one day, our precious Beatrice had become God's future child...and shattered our hopes and dreams of having a second daughter.

I checked into the hospital the night of the 13th. Over forty-eight excruciating hours of heartache and labor later, I delivered. That sweet little baby fought hard, but died during the final hours of my labor. Her weak little body just couldn't take it. My second daughter, Beatrice Heather Geary, was born still on December 15th at 7:09pm. I delivered an angel.










Life became a blur for me December 13th, and I have been spinning around ever since. It's hard to say what the worst part of those first few weeks were. Hearing that a baby we tried six months for had a death sentence? Delivering Beatrice and having the nurse tell me she had no heartbeat? Handing her stiff body over to the nurse who was in charge of taking her to the hospital morgue? Or going to the funeral home: picking my daughter up out of a coffin the size of a shoebox, cuddling her cold body, knowing that in hours she would be reduced to ash. All I know for sure is that there IS a Hell...I've been there. In fact, I visit it daily. If I could stop the world and stay in bed for weeks to recover, I would. Unfortunately I have two children to raise, a house to maintain - and life stops for no one.

So why on earth would I be telling this story on a blog devoted to my first daughter's struggle with vision? If you read my last blog entry, you will know why. When Avery Claire had two final surgeries and regained most of her vision, I said this:

While I will never be glad that Avery had to go through this disease, I will forever be thankful for the lessons it taught me. Like to strive to find a blessing in each day. Even the bad ones. As cliché as it sounds, the things you take for granted today may be ripped away from you tomorrow.

I learned that there are always people who have it worse…but that does not mean your tragedy isn’t horrible. I think it is okay to have moments where you are angry, sad, and think life is unfair. But I don’t want to live my whole life like that. There exists a choice: to become a victim or to use your grief to change the world around you. I want to look back and think that our struggle made a difference.

And finally, I saw firsthand how the support of family and friends can get you through your darkest days. Thank you for your love…and most of all, for the way it made me strong for my little girl.

It’s very easy to talk breezily about “the things I’ve learned from Avery’s blindness.” Of course it is. I had the fairy-tale ending. My daughter’s complicated case made her final result practically a miracle. Most of the children we know do not have stories with happy endings. For that reason, our family will continue to raise funds and awareness for kids that have visual impairments. I will still hit you up to participate in various events; to support a cause I will always have a personal connection to. Team Avery will live on as a tribute to my little girl, and more importantly, our small way of touching the futures of children not as lucky as she was.










This time I did not have the fairy-tale ending. My baby died. I have been through a mother's worst nightmare, and I currently reside in Hell. But as sad, angry, and heartbroken I am, I will stay true to myself...I will not be a victim. On March 20th, I will be running the Atlanta Publix Marathon in honor of my Beatrice Heather...and ALL the Angel Mamas who have given me the strength to get through life - hour by hour. That being said, I am still a stanch advocate for visually impaired kids, and I will use Avery Claire's story to help similar struggling families. By coincidence, my baby Beatrice was due to be born over the weekend of the Run for Sight. Originally I was not able to go - but now I cannot think of a better way to use BOTH my tragedies to help others. I think little Bee would be pretty proud that her Mama put her problems aside to help others.

If you would like to support me in my 26.2 for Beatrice, I ask that you donate to our team at the Delta Gamma Center for Visually Impaired Kids in St. Louis, MO. But if you are in the area and want to join our team to run/walk in the Run for Sight 5K on May 1st, sign up! (Bonus: you get to see the Gearys! Whoop Whoop!)

TEAM AVERY is under a new name this year: Team Avery / Team Margaret. Margaret is a four-year old friend of Avery's whose mom I met during last year's Run for Sight. Her story is sad but inspiring. Much like Avery Claire's and Beatrice's. So...

Will you help us make a difference?


xoxo
Erin


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Wednesday, October 6, 2010

Our Happy Ending

2:32 PM | Posted by Team A {Squared} | Edit Post

 

By now you have figured out that my blog updates come few and far between. I admire anyone who can write every day, because these days I’m just lucky to get my kids fed and off to school without a hitch. Cooking? Laundry? Blogging? Now that’s pushing it!

First, a VERY belated thank you to everyone who participated in May's 18th Annual Run for Sight (yes, May. Um, I'm  a little behind). I still tear up when I think about the over 120 contributers to TEAM AVERY: a journalist who donated, twice, in honor of his sister; my sweet girlfriend Jenny whose  daughter has had a worse fight than Avery; my sister, brother-in-law, and Lulu, who drove 20 hours round-trip from Atlanta (with a screaming baby) to support us; girlfriends from days past whose generosity I will never forget; sorority sisters forever in my heart; new friends and old friends joining together...my aunt, may she rest in peace, fighting cancer for the third time and yet telling me repeatedly that she was inspired by my child. 

In my Letter to Avery I wrote about our overwhelming success, and I apologize that I never posted pictures of everyone who showed up.  Here is a link to the results page: http://www.dgckids.org/runforsight/  or http://www.dgckids.org/  We actually ranked 3rd place in fundraising, and Brian and I donated the prize to another DG family. I will never forget the image of over forty people wearing pink in honor of my little girl. A shadow box in Avery Claire's new room holds her tee shirt from the day, as well as the TEAM AVERY group picture and other memorabilia from her two Run for Sights. I hope it will always serve as a reminder to Avery of how special she is, and how big an impact one little girl can make.

I want to next acknowledge that this blog has been my family’s story – and my heart - put out there for anyone to read. It is full of my experiences and my opinions. Our world was shattered when our first-born child suddenly lost her sight one Spring. We have been open from the beginning in the hopes that Team Avery would touch someone’s life; that from our darkness another person might find light. I am extremely proud that so much money and awareness has been raised from our child's story. But when I first opened up our life to cyberspace, I never dreamed how other people would touch my life back. This journey has introduced me to friends and kids with similar and worse situations, and you all have been a source of inspiration in times of doubt. It is anyone’s right to judge me, laugh at me, or roll your eyes while you read. I know I’m no one special. I’m just a mother of an amazing little girl whose world turned dark…and I chose to write about it.

 It has now been one month since Avery Claire’s last eye surgery; two months since we began our final attempt to improve her sight. I won’t bore you with details, except to mention that two hours into the first surgery our surgeon came out to reconsent us. He wanted us to know that a lens looked impossible given the anatomy of Avery’s eye and the toll the disease took on surrounding tissue.

Which is why it gives me immense pleasure to tell you that Avery has not one, but two synthetic lenses now…one in each eye. Astonishing success. She has gone from not being able to even SEE your typical eye chart – let alone the letters on it – to having 20/25 vision in both eyes. Without correction. She currently functions without glasses, although she will be getting a prescription for bifocals to help her read. It is absolutely the best-case scenario for Avery’s situation, and in our hearts, a miracle. Sometimes my husband and I just look at each other and say, “the nightmare is over.” From such pain has come unbelievable joy.

 Someone once cruelly described my daughter in her cataract glasses as “someone who looks like she rides the short bus.” Today you could not pick her out of a crowd of other preschoolers. Instead of immediately noticing that Avery Claire has a disability, you will now meet her and notice her sparkly brown eyes, curly blonde hair, and happy grin. Watching her play one afternoon, it struck me that anyone who meets my little girl from now on will not immediately know what she has gone through. The three years of surgeries, the therapy, the tears…it is all neatly tucked away and becoming part of her past. Maybe when someone gets to know Avery they will learn her story,  but it is no longer an attention-grabbing disability or the elephant in the room.

 While I will never be glad that Avery had to go through this disease, I will forever be thankful for the lessons it taught me. Like to strive to find a blessing in each day. Even the bad ones. As cliché as it sounds, the things you take for granted today may be ripped away from you tomorrow. 

 I learned that there are always people who have it worse…but that does not mean your tragedy isn’t horrible. I think it is okay to have moments where you are angry, sad, and think life is unfair. But I don’t want to live my whole life like that. There exists a choice: to become a victim or to use your grief to change the world around you. I want to look back and think that our struggle made a difference. 

And finally, I saw firsthand how the support of family and friends can get you through your darkest days. Thank you for your love…and most of all, for the way it made me strong for my little girl.

 It’s very easy to talk breezily about “the things I’ve learned from Avery’s blindness.” Of course it is. I had the fairy-tale ending. My daughter’s complicated case made her final result practically a miracle. Most of the children we know do not have stories with happy endings. For that reason, our family will continue to raise funds and awareness for kids that have visual impairments. I will still hit you up to participate in various events; to support a cause I will always have a personal connection to. Team Avery will live on as a tribute to my little girl, and more importantly, our small way of touching the futures of children not as lucky as she was.

 

See you this Spring.


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