Sunshine in the Darkness: TEAM AVERY

Blessings

2011-04-26T10:09:00.004-05:00

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 know my face darkens and I usually turn away, because all I can think is that 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

The Cataract Chicks

2011-03-08T17:41:00.006-06:00

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!

https://secure.getmeregistered.com/homepage.php?id=2580

We'd love for you to join Team Avery/Team Margaret! Will you help us make a difference?

With love,

Jenny

Grief Won't Stop Me...

2011-02-22T18:57:00.013-06:00

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?

https://secure.getmeregistered.com/homepage.php?id=2580

xoxo

Erin

Our Happy Ending

2010-10-06T14:32:00.022-05:00

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.

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.

See you this Spring.

A New Day

2010-08-09T17:51:00.020-05:00

Hello Sports Fans! Welcome to a special edition of the Team Avery blog. I know it's not "Team Avery Season," so obviously I have an important reason for getting back on the horse after five months of not writing.

The summer has been eventful, to say the least! I'm now writing from our new home in Macon, Georgia. Yes, we are still owners of our St. Louis home. No, this is not a good thing. Our move started off with a bang, to say the least! The week prior to our leaving, Auden had a febrile seizure (ER visit #1), Auden broke my nose (ER visit #2), and Avery fell out of bed and fractured her clavicle (ER visit #3). This all made for a very interesting drive down to Georgia, where everyone but Brian was sucking down Advil like it was our job. We survived and are all fine now. Avery celebrated her fourth birthday this July...for the third time. It's safe to say that she now thinks she gets a birthday party once a week.

So far, all I can say about Macon is that...it's hot. Like, insanely, 100 degrees at 9pm hot. The kids and I don't have a wide variety of activities to do right now, so we spend much of our time in the inflatable baby pool outside. We live a little out in the country, and sometimes we even see deer in the yard - which Auden refers to as "puppies." Avery went to a day camp at her new school; other than that, there is a whole lot of TV going on.

Avery's health has been...well, typically Avery! After a short break where we had weaned her off all her asthma medications, she suddenly had a bad episode that was difficult to get a handle on. Thus she is back on her nebulizing routine and prescriptions. We also saw a new pediatric neurologist for a second opinion on tests that had been done in St. Louis. Avery now officially carries the diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD - NOS) and Aspergers (on the mild side of the autism spectrum but NOT autism). She will resume Occupational Therapy for this and developmental delays this Fall. Avery also starts preschool at Stratford Academy on August 19th - go Eagles! We can't wait to see our cutie in her little plaid uniform.

Now on to the big news. On Tuesday August 3rd we drove up to Emory in Atlanta to visit Avery's new Ophthalmologist, Dr. Scott Lambert. Besides being a pioneer in placing Intraocular Lenses (IOCs) in infants as well as one of the top specialists in the country for pediatric congenital cataracts, he is also a really nice guy. Brian and I were immediately impressed by how confident yet humble this man behaved. Avery's direct quote: "I like this doctor!" Let me assure you, those words have NEVER come out of her mouth before! Bottom line is, we trust this man to take good care of our princess.

After the exam, the consensus was to again attempt placement of IOCs. If you've ever chatted with me about our situation, you know that Avery went through this surgery once, at age 22 months, when her cataracts were first removed. At that time, her Ophthalmologist hoped to remove the diseased lens from her Right eye and then replace it with a synthetic lens during the same surgery - to be repeated on the Left eye. After a few hours in the OR he judged the procedure too dangerous given the anatomy of Avery's eye...a decision we were behind 100%! Two weeks later her Left cataract and lens were removed. Thus Avery has spent the past 2 years aphakic (without lenses) and sees only light and color without correction. She does not have any peripheral vision and struggles with depth/height changes. We have been extremely blessed that she had the option to wear glasses that function as a lens (aka, her cataract glasses). These allow her between 20/50 and 20/70 vision...when they are clean, that is!

So this is the plan: Avery will go into surgery at the Children's Hospital of Atlanta this coming Thursday, August 12th. Once she is under anesthesia, Dr. Lambert will examine both eyes. His goal is to fix a scar on Avery's Left pupil (the one shaped like a diamond - we call it her "cat eye") AND to place a synthetic lens. If this first surgery (on her Left eye) is a success, Dr. Lambert will operate on Avery's Right eye within 2 to 6 weeks. She will wear a patch for weeks while she recovers. With these IOLs, Avery will still not be able to accommodate and will rely on bifocals to read and sharpen her distance vision. However, IOLs decrease her risk for glaucoma, and she will also regain peripheral vision. She will be able to carry out activities of daily living (e.g., taking a bath) and swim without glasses. Best-case scenario: IF the surgery is a success, Avery will no longer be totally dependent on glasses!

Obviously I am joyful, albeit cautiously optimistic. It seems too good to be true! And let's face it, we have already been through this roller coaster once. I remember being in the hospital gift shop with Brian and my mom during Avery's first eye surgery. We were so hopeful; we bought her a big bright pink and purple flower pinwheel. Everyone was so excited to think that Avery would be able to SEE it once she recovered. Then we got the phone call that the lens was removed without any replacement. Avery came out of surgery as blind as when she went in. The pinwheel sat my diaper bag as we scrambled to give our girl a present that didn't require vision.

I've been through many different emotions this week. I'm so happy that Avery gets a second chance! She has the opportunity to regain a major portion of her sight. Our family is so incredibly blessed to have this hope. However, the thought of watching my sweet daughter go through more surgeries is also absolutely heartbreaking. These will be surgeries number 5 and number 6. Granted, we have friends who have been through so much worse it's astounding. I feel like a baby for doing anything other than cartwheels! But the thought of more eye surgery has taken me back to the darkest time of my life, a place I try daily to forget about. I can't help but see Avery's little baby face when she was a 19 months - looking at me and not seeing me. The crawling, the blank stares. When I lie in bed at night I hear her frightened screams. I think of all the therapy it has taken to keep Avery from falling behind; I think of all the struggle it took to get Brian and me to a place of acceptance. While I am ecstatic at the possibility of success, I'm not ready to relive the letdown we had two years ago.

The other strange reaction I've had is guilt. I feel guilty that my daughter is able to have a second chance at sight, particularly when we know so many kids whose vision problems are growing worse. Not to say that they do not have full, normal lives because of visual impairment - they do. But it is painful to watch your child struggle SO much to do things that others take for granted. I wish that every parent and their visually impaired child had the same opportunity we have. Which is why, even if Avery's vision is improved, I will continue to work to raise awareness (and funds) for programs that support these kids.

When we told Avery about the surgery, we only explained that "the doctor just needs to work on your eyes." At first she screamed "my eyes are fine!! NOOOO!" Today however, when I brought up the subject again, Avery assured me: "Don't worry Mom. I'm a brave girl." Too true.

There is a song by Celine Dion we used to sing to Avery when she began going through her eye trouble. For some reason the lyrics gave Brian and me comfort then, and have helped me find strength now. I've found myself lately humming it to Avery. Please think good thoughts for us this Thursday; say a prayer if you are religious. We'll keep you posted...

I was waiting for so long
For a miracle to come
Everyone told me to be strong
Hold on and don't shed a tear

Through the darkness and good times
I knew I'd make it through
And the world thought I had it all
But I was waiting for you

Hush, love

I see a light in the sky
Oh, it's almost blinding me
I can't believe
I've been touched by an angel with love
Let the rain come down and wash away my tears
Let it fill my soul and drown my fears
Let it shatter the walls for a new, new sun
A new day has...come

A Letter to Avery

2010-05-04T13:42:00.012-05:00

Dear Avery,

Some day you will not be a little girl anymore, and you will certainly ask Daddy and me all about your "Special Eyes." I'm sure you will hit an age when you despise being different and hate your unique Cat-Eye pupil; you will scream at me for contacts and refuse to wear your thick but adorable wire-rimmed cataract glasses. Like every other girl, you will just want to be like all your friends.

The scrapbooks and pictures we have kept will explain your disease and the struggle you began at the age of 21 months. However, the most important thing for you to know cannot be explained by books and albums. You might not even understand this letter until you have a child of your own.

My sweet Princess Avery, yes...you are different from all the other girls. You are so, so special. God made you visually impaired, but in doing so He gave you the power to make a difference. In the two years since you were diagnosed with Cataracts, over $10,000 has been donated to visually impaired children in your name. Friends and family love you so much, and have moved mountains in your honor. Your story has touched people you have never met, and the money raised from telling your story has helped hundreds of babies just like you. In your short 3 1/2 years on Earth, you have indirectly bettered the lives of so many. You are a ray of sunshine.

It is very cliche to say that every cloud has a silver lining, but it's true. Please don't live your life viewing things in black and white. Yes, Daddy and I were devastated by your diagnosis. We would never have wished such pain and struggle on our beautiful first born. But now, two years out, we can see all the positive things that came from your darkness. We are overwhelmed to think of the difference your disease has made to others - and the light that you have brought to their lives, as well as ours. You have given hope and help to so many visually impaired kids...as well as their parents.

If you learn anything from reading your scrapbooks and seeing your name in print, learn that it IS possible for one person to make a difference. At almost 4, you've already made the world a better place. Dream big, precious girl. The universe is yours for the taking.

Love,

Mama

“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.” Helen Keller

Two Days Left...

2010-04-29T20:09:00.013-05:00

There are only 2 days left until the big day...The Run for Sight is finally here! (Or, as Avery calls it, The "Go, Avery, Go Race." If this sounds eerily similar to "Go, Diego, Go" you are right on the money).

We have come so far! Two years ago this May,

we first noticed Avery losing her sight; a week later she was diagnosed with fully oppacified congenital cataracts. She had two surgeries to remove the lenses in her eyes and began wearing cataract glasses to see her own hand. Now she is a bespectacled 3 1/2 year old, full of life and making up her developmental delays. The prognosis looks great: this Fall we expect Avery to have two more surgeries to place interocular lenses in each eye. She will always wear bifocals, but her eyesight will hopefully be improved dramatically.

To everyone who has supported TEAM AVERY and the Delta Gamma Center for Visually Impaired Kids, thank you. Thank you for giving kids like Avery a bright vision of their future. See you Sunday!

Spring Has Sprung

2010-04-13T17:52:00.018-05:00

It's MORTIFYING to realize that I haven't written anything for over a month. I knew Spring was going to be crazy...I just cannot even begin to explain just HOW crazy it has been. The Geary household has been busy this 2010.

First and foremost, on March 18th we put our house up for sale. Yippee! Finally, six years of a surgical residency is coming to a close. Oh, I will miss my girlfriends (and the STL Zoo) terribly. I have had some wonderful moments here in Kirkwood, even though my husband finds it hysterical to refer to St. Louis as "The Lou," like it is prison...as in "I did 6 years of hard time in The Lou and I'll be set free on June 30th."

We have great memories of this house, but it's time to move on...

The day after our house went on the market, we flew to Macon for a SECOND time to look for a new home - and this time, we had luck! So far, so good; the inspections have been done and contract worked out. We are on track to close June 1st, move in on June 8th. The coolest thing about this house (other than the fact that my kids will no longer share a room, hoo-ray!) is that it is across the street from a girl I used to work with over six years ago at Children's in Birmingham! Not only are our sons born 1 DAY apart, and not only is she also married to a surgeon and understands the lifestyle...but she and her husband also happen to be the nicest, funniest people you would ever want to meet. I could not ask for better neighbors! Needless to say, this makes me even doubly excited about our move.

These are our new digs:

Immediately upon arriving back in STL, it was time to focus on my next project: the Go! St. Louis Marathon. If you've read my blog you know I've been running; what I haven't told you is that I was also training for my first marathon. Okay, "training" is a little too strong of a word considering I signed up for the race late February and took two whole weeks off in March while I was dealing with buying a house/selling a house. I finally freaked out two weeks before D-Day and had my husband take the kids by himself (also during an Open House) to get my longest run in...17 miles on the treadmill. Once. Let's just say, I will be a hella more prepared for marathon #2.

The race was on a Sunday morning, and I spent all weekend wondering why on earth I had thought running the full 26.2 was a good idea. A half I was ready for, but the full? To make matters worse, my husband insisted on studying the course (I was NOT going to look). Right before I went to bed that night he couldn't help himself and exclaimed "do you know that basically you are running from downtown to our house and back?!" Thanks honey! The morning of I was so nauseous I could barely cram down breakfast. No possible way was I actually going to finish this race. But then suddenly we were there, and I caught the bug. It was exciting to run past my cheering husband and kids and have the opportunity to show everyone that I was more than just "Avery and Auden's Mom."

Here I am at the beginning of the race:

I won't bore you with what ran through my mind during those 26.2 miles (although I will say that at Mile 20 it's possible I became delusional. I tried to text my friend Burbs and then realized it said "yyyyyyyyzzzzddkkkkk." I also noticed that I was running crooked, like those crazy people you see in the desert who haven't had water for 3 days). I also will never eat Gu again. But...

I FINISHED! Even better, I never stopped running! Okay, I walked the water stations but seriously - I have never felt more proud in my life! The craziest part was that I ran the marathon in 4 hours and 3 minutes...and was, apparently, 23 minutes away from qualifying for the prestigious Boston Marathon (which is why even though I currently can't walk I will probably try again - I'm competitive like that). I never, ever thought I'd be able to run 26.2 miles, especially while having two young kids, especially while being married to someone who is never home, and ESPECIALLY after all of the drama of Avery's health issues over the last 2 years. It made me realize how mentally strong I really am...and how much I can be capable of if I want it enough. Cliche, right? Okay, it also made me realize that I am ONE BADASS MOTHER ;-)

While I was driving home from the marathon, I called my mom to tell her how I did. Of course she asked me, "so, what's next on your Bucket List?" Well, before nursing school I tried to start getting my pilots license and actually flew a Cessna a couple times (no, I wasn't in the plane by myself). But now I'm thinking that being a Helicopter Pilot would be a lot more fun. The biggest obstacle will be my husband, who doesn't want to be left alone raising our tiny hellions and thus tries to block some of my crazier pursuits.

My 60-year old mother's response? "Well, just tell me when you go jumping out of an airplane, because I want to come with you." WHAT?!!!

For Sale

2010-03-18T21:34:00.001-05:00

Looking at the date of my last blog, it has been a MONTH since I last wrote. Yikes! Keeping up a consistent presence here on TeamAvery.com was one of my greatest fears about blogging. The other fear was that no one would read what I wrote in the first place.

I have been seriously busy lately. In addition to training for the GO! St. Louis Marathon, taking care of Avery's newest medical diagnosis (blog to follow), our TEAM AVERY fundraising - oh, and raising two kids under the age of 4 - we are preparing to move to Macon, Georgia at the end of June. Yiiiiiiiiiiiiii!!!!

The sign went up in our yard tonight, and we will become official over the weekend. Tomorrow morning we fly in to Atlanta to celebrate my beautiful niece's baptism. Brian and I are unbelievably excited and honored to become little Elliott's Godparents. From there the four of us drive to Macon for Househunting trip #2. While I don't have high hopes for finding a house, I cannot WAIT to see Amanda, Anslie, and Tiffiny. Those girls have been phenomenal and have made the Macon-aspect of our move a pleasure.

So, hang in there with me! I have a ton of funny Avery stories, information about her health status, and a billion pictures that I'm just dying to post. Until I talk to you again...know anyone needing a cute little bungalow in The Lou?

Fear, Grief, and Giving Back

2010-02-25T18:18:00.012-06:00

For the past two weeks I’ve been a mess. (Yes, for those of you that are thinking it, even WORSE of a mess than usual). I’ve just felt sad, down-in-the-dumps, depressed – whatever you want to call it. First I attributed the somber mood to winter…I HATE the cold! Then I decided it must be a result of our impending move to Georgia. As happy as I am to head back South, it is an extremely stressful time. Sorting through your things to evaluate what stays and what goes; packing up a life you’ve spent 6 years building…it’s emotional.

But usually I’m pretty tough, emotionally speaking. I tend to go running instead of dealing with my feelings directly. So imagine my surprise yesterday when I began CRYING during “Celebrity Rehab.” Sobbing. I’m embarrassed to even admit I watch such trash, let alone that it brought me to tears. (Which is why I immediately followed my sob-fest by taking a pregnancy test. NEGATIVE – phew!! Not that I actually thought I was with child…I tend to be an angry pregnant lady, not a weepy one. Poor, poor husband).

But it wasn’t until late last night – after I began crying because the Serena and Lily fabric swatches I ordered did NOT look like they appeared on the computer – that the source of my turmoil became clear. Surprisingly, Brian was the one who figured it out.

My son turned 17 months old last Thursday. He is the spitting image, size and shape of his sister Avery when she was a toddler…and close to the age of 20 months old. The age Avery was when she developed cataracts. When she went blind, and my world collapsed around me.

I was six-months pregnant with Auden when she got the diagnosis. I remember holding Avery during her second post-op visit and hearing that my unborn son had a 50% chance of developing the same congenital cataracts his sister was now dealing with. I stood, speechless, in the Ophthalmologist’s office: one baby in my arms, one baby in my belly. The thought of my second child losing HIS sight seemed beyond cruel.

I felt so lucky when Auden was born healthy.

Since birth our Ophthalmologist has checked his eyes every 6 months, and of course I keep my own “eyes” on him. So far we’ve had nothing but great news. But in the back of my mind I keep waiting for the other shoe to drop. I try to think positively, because “fifty-percent chance of developing cataracts” can also mean “fifty percent chance” of NOT developing them.” But no amount of positive thinking keeps the turmoil at bay for long. Behind my happy smile on most days, there is raw fear.

The closer Auden gets to the age Avery was when she lost her sight, the more of a mess I become. The past is resurfacing, and memories I want to forget are popping up. In that Summer of 2008 the rapid surgeries, recovery, therapy, and new baby happened in a mere three-month span, and I was constantly too busy to process what was actually happening.

Suddenly I am being forced to think about that time again. All the sadness, guilt, and anger that came as a package deal with my daughter’s blindness is resurfacing. I look at my son and I can't help but see my daughter at the same age, playful and unaware that in 3 months her life would forever change.

I haven’t gotten to the place where I can accept all that happened. So now that I realize why I'm so emotional, what will I do? I'll continue to run. And, I'll continue to throw myself into Team Avery. There is something so cathartic about taking your own grief and using it to help better someone else's life. Everytime I see that someone has donated or chosen to run/walk/cheer with Team Avery, I am buoyed up with happiness. I know that those dollars will go to a center that touched my life during my greatest sorrow. To a center I know will be there for me if ever I go through this journey again.

I hope that, by sharing my story on this blog, someone out there will be be moved enough to touch the life of a family they will never meet. And I hope you know how this helps me: I was once on the receiving end of a donor just like you. By supporting Team Avery, another mother will be able watch her blind or visually impaired child's life blossom. You never know who that child may be.

TEAM AVERY Update

2010-02-14T20:01:00.012-06:00

TEAM AVERY is very excited to give an update on our fundraising efforts for the 18th Annual Delta Gamma Run for Sight. With two and a half months to go until the race, we have had 53 contributors and raised over $3,000 so far...75% of our goal! So far we have 22 people (and 7+ babies) running and walking with Team Avery. Please tell your friends and family members to sign up! There is plenty more room to join our army of pink!

Please enjoy some pictures from last year's race. I'm so happy that we already have a MUCH larger team then 2009's Team Avery!

I'd like to thank the following supporters for their donations to Team Avery:

Contributors on Behalf of Team Avery

$250.00 from Tiffiny & Bryan Weidner
$250.00 from Urology Specialists of Georgia www.UrologySpecialistsofGA.com
$250.00 from Matthew warren
$100.00 from Michael Kissel
$100.00 from Peter Murdough
$100.00 from Kathleen Nelson
$100.00 from Mimi & Baba
$100.00 from Amanda and Frank Casey
$100.00 from Ben & Heather Lietz
$100.00 from Joshua & Anslie Perkel
$100.00 from Nayak Plastic Surgery Mike Nayak
$75.00 from James Cummings
$50.00 from David Grosshans
$50.00 from Louis Imbrogno
$50.00 from Kathleen Gee
$50.00 from Teresa Unser
$50.00 from Allison Burbage
$50.00 from Nate and Becky Kelley
$50.00 from Nilay Gandhi
$50.00 from Patricia Kearney
$50.00 from Erin Geary
$50.00 from Brook Gavlick
$50.00 from Sam Inman
$43.00 from Jody Capdeboscq
$43.00 from Kathy Thompson
$43.00 from Allen Clack
$43.00 from Mark Schumacher
$40.00 from Catherine Glavan
$30.00 from Gail Buente
$30.00 from Linda Fry
$30.00 from Jennifer Knuckles
$30.00 from Melissa & Stephen Hane
$25.00 from Barry Robichaux
$25.00 from Kutz Rehm
$25.00 from Rebecca Rightley
$25.00 from Stacey Iofredo
$20.00 from Corrigan Browne
$20.00 from Erin Griffin
$20.00 from Gretchen D'Huyvetter Cobb
$18.00 from Ben Lietz
$18.00 from Maggi Fitzgerald
$18.00 from Mike Fitzgerald
$18.00 from Janeen Foerster
$18.00 from Jane Hornby
$18.00 from John Foerster
$18.00 from Kaitlyn Cafazza
$15.00 from Joan Edmonds
$15.00 from David Brandt
$10.00 from Michael Gruss
$10.00 from Kevin Ostrowski
$100.00 from Louise Billingsley
$50.00 from Vicky Waddell
$25.00 from Erin Hake

Mother of the Year

2010-02-11T08:23:00.006-06:00

Have you ever felt that your mothering skills are not up to par? Well I’m here to make you feel better about yourself. Let me tell about my day. I’d like to say that this was an abnormal blip in my otherwise stellar week, but you know I’d be lying. And I’m nothing if not R-E-A-L.

My day began at 4am. Our 900sq foot house is so huge (sarcasm: heavy) that my husband’s alarm wakes at least one child up daily. Today it was Avery…not good. Groggy, I let her crawl into my bed and politely told her to “stop talking and go to sleep.” HA! As I drifted in and out of sleep, I heard snips of her chatting like “I’m firsty, I need a drink,” “I need to peeps (tee tee),” and of course, “MOMMY! GET UP!” I ignore her until she knows she has me: “Mommy, it’s light out that means it’s wake-up time.” Damn! At this point my son Auden has been screaming for about 20 minutes, so I give up. I take the pillow off my head and walk like a zombie to the Nursery.

The smell of poo is the first thing that hits me as I walk in. When I regain focus, I see my whimpering son sitting in a gigantic pool of chocolate milk. Crap! That’s not chocolate milk! And where are his pants?? Fully awake now, I sprint 2 feet to our tub and run a bath. Telling Avery not to touch “brother’s huge disaster,” I grab Auden and toss him in the tub. Much screaming ensues (from both of us) as he tries to get out of the tub while I’m scrubbing the nipple-to-toe mess that is my son. Soon I have a fresh clean baby, diapered and clothed. I feel a brief sense of pride that Auden is out of his pajamas before 9am.

Then I hear it: Knock Knock. Too late, I realize that I scheduled my son’s Parents As Teachers (PAT) evaluation for early this morning. I skulk to the door in a fleece and my most embarrassing pair of jammy pants. They’re Hannah Anderson (i.e., bright!), orange and red striped. Brian likens them to Harry Potter’s tie. My hair is unwashed and sticking up in clumps; I’m like Albert Einstein without the genius. Auden is barefoot. Avery wears a fairy tee-shirt (covered in juice), red patent leather dress shoes, and no pants…just “big girl panties” that are sideways and crotch side out. The disaster that is Auden’s crib is beginning to ferment and perfumes the air. This is bad, but is no match for the chaos that is currently my living room.

We are going house hunting in a week and moving to Georgia in 4 months. Thus I have suitcases and trip clothing (which has been carried out into the open by my kids), boxes, and bubble wrap adding even more disaster to my current “kid friendly” décor. Broken crayons, toys, puzzle pieces, and snowy boots add to the look. My PAT educator had to step over a wayward cereal bowl to get into the house.

*Side Note: I’ve decided that, not only will I spend snow days getting a jump on this moving business, but that our empty house may be sell better than our full one. What prospective buyer wants to peruse my little bungalow and see 800 pictures of my kids? Or the “artsy” photograph I have of my belly from each pregnancy? Or even worse: Brian’s massive collection of Urology Textbooks. Eek! Titles include “Male Erectile Dysfunction,” “Male Sexual Reproduction,” “Gynecology Oncology," and my favorite, “What Your Poo is Telling You.” I have begged and pleaded to have these books burned, but my husband is adamant that they are useful reference books. Still, he better not go blaming me when our precious princess Avery is the most sexually educated of all her peers. I have nightmares of both kids hiding in a dark upstairs corner, snickering and sneaking looks at the extremely detailed pictures of genitalia. Sigh. Why, oh why could Brian not pick a more glamorous surgical sub-specialty? But I digress…

The PAT educator and I exchange pleasantries, then I sprint into my room to put on some jeans. That’s when I hear my Ipod mix change from “kid music” to my “running mix.” First song broadcast over the house? “Crazy Bitch.” Let’s just say the lyrics are reeeeally inappropriate for kids. Nice. I run BACK out of my room and yank the Ipod out of the stereo, compose myself, and try to act like a mother of two (even though I didn’t do the dishes and am stuck sipping coffee from a pink plastic Princess cup). Amid boxes, toys, and the high-heeled shoes my son is suddenly preoccupied with, we sit down on the rug for our evaluation. Of course the rug is covered in cookie and chip crumbs. And somehow with 4 inches of snow on the ground, there was still an ant IN my house. I know this because he chose a very inopportune moment to crawl across the floor by my PAT educator…no doubt on his way to eat the errant Fruit Snack next to her, abandoned on the floor from this morning’s “breakfast.” My educator politely ignores the ant and begins the Denver Screening Test. Immediately my son decides that television is much more interesting than stacking blocks, and a 10-minute temper tantrum ensues. The debacle finally ends when I pull the plug on the TV so that Auden is unable to turn it on.

The hourlong visit continues without any improvement. Avery chooses this morning to recite the words she is NOT supposed to say: "we don't say shut-up, stupid, or God Dammit." Auden uses my moment of shock to his advantage and sneaks off - climbing up on the table to dance. Neither child cooperates and I spend the entire time chasing someone around the couch. Finally the poor frazzled evaluator leaves, probably driving straight to DHR to write me up.

I'd like to say that I pulled it together by the end of the morning, but I didn't. The TV/Babysitter went right back on so that I could make lunch and get ready for my run. Since I missed breakfast and was starving, I grabbed two packages of Fruit Snacks, a granola bar, and washed it all down with somebody's chocolate milk. Next stop: run, school, doctor's office, Target, and laundry. My goal for the rest of today is to not lose one (or both) children during these errands. It's hard being Mother of the Year, but somebody's got to do it.

Fitting In

2010-02-03T21:06:00.006-06:00

I’ve never really fit in. As much as I would like to chalk it up to moving roughly every 5 years since I can remember, I’m pretty sure my personality is as much to blame as my nomadic childhood. Let’s face it, I’m just goofy. Kind of skinny, very shy, plain, and inherently nerdy. Those characteristics - combined with the adolescent penchant for teasing -made for a lot of humiliating moments growing up. (Note: my mom did NOT help this by telling me once to “share a song” for Show-N-Tell. I’ll never live down Eric Dunhowr making fun of my “ugly voice and stupid rainbow song.” Thanks, Mom!) Imagine my awkwardness in trying to transition to a new school or town every few years. (Oh, did I mention my perm? And the braces I wore for four years?) Forget it. People say I’m a “loner”…I just learned to be content by myself. It wasn’t a choice as much as a habit that formed over time. Don’t think I didn’t try to change myself every which way to fit in.

Now that I’m thirty-three, I’ve come to terms with my idiosyncrasies. Still, for most of my life I’ve felt I was on the outside looking in. I always envied the girls who were surrounded by friends; the kids who had lived in the same house their whole life; the people who had a best friend they had known since preschool. I just wanted to have that feeling of “belonging,” that I was a part of the gang. Now I’m sure that I probably had things that other people wanted (Like my awesome perm. Seriously, Mom, were you TRYING to torture me?!). But for some reason, fitting in was that ONE thing I really longed for, yet never had.

When the ultrasound revealed that the 18-week fetus I was carrying was going to be a girl, I was beyond excited. There are no words I can use to describe the happiness I felt knowing I was going to have a baby girl…I still remember that day, like a hundred Christmas Days wrapped up with my wedding. When Avery was born I couldn’t believe how beautiful she was. All 5 lbs 14 oz of her was sweet smelling and baby-soft, perfection from her fingers to her toes. I stared at her and immediately believed in miracles. From then on, I wanted only the best for Avery. I wanted to make sure she never hurt, never felt pain. I promised my baby that she would never want for anything. And I prayed that, unlike her mother, wherever Avery went she would always fit in.

After two days of parenting, it was clear that I was not going to be able to spare my child hurt or pain. And frankly, sometimes Avery’s attitude makes me so mad that I take away her 16^th birthday car… thirteen years before her actual 16^th birthday. However, I do my best to make sure she never wants: for hugs, kisses, love, or attention.

When Avery was diagnosed with cataracts, it became immediately obvious that “fitting in” was probably never going to happen for her. When she got her first pair of cataract glasses both my husband and I cried. Although we were ecstatic that Avery had regained some sight, it was obvious to everyone who looked at our daughter’s thick lenses that she had a disability. Brian and I spent many nights in tears when we imagined the struggle our little girl was going to have trying to belong.

Our fears were not unfounded. People have called our now 3-year old “retarded,” “special,” “different,” and “big-eyed” based solely on her appearance. Many rude comments have been made in Avery's presence, as if her lack of vision also translates into a lack of hearing. I physically ache when I imagine what kind of cutting remarks severely disabled people must endure, because the things said about my daughter have made my hair stand on edge. My husband and I seriously considered getting Avery contacts (yes, even infants can wear them) to help spare her some of the offensive remarks. Even five-year olds can be surprisingly mean.

It was in a doctor’s office today that I realized something. I was watching Avery be Avery: jumping on and off the exam table as fast as she could while babbling about the Disney Princesses. Every nurse that came by was made to admire Avery’s favorite Baby Lulu tutu, which is pink netting with tons of silver sequins (visually she is very attracted to sparkles - her wardrobe looks like “Dancing with the Stars”). I’m sure Cardinal Glennon wasn’t expecting the extravagant dancing performance they received today. I sat back, exhausted by my girl’s energy, and then it hit me. I’ve had it wrong all along.

Avery goes about her life completely comfortable in her skin, as happy as any little girl you’ve ever seen. Thick glasses, medical issues and odd behavior don't limit Avery. She lets her personality shine through; her quirks make her beautiful. Cutting comments from ignorant people might make her pause, but they never stop her from being herself. You’ve heard me refer to Avery as our “Firecracker.” What a shame it would be to dampen that bright light!

I think the best thing I can do as her mother is to keep fostering her already strong sense of self…and not direct her to change her idiosyncrasies just to belong. Think about how much more fun high school would be, knowing what we all know now...that we are happiest just being ourselves. I would love for my daughter to go through life having grasped that concept early.

Isn’t it amazing when a 3-year old teaches you something about life?

America's Best Dance Crew

2010-02-01T08:27:00.002-06:00

I confesses, this is a lazy post. Not because I'm usually lazy, but because this past week our house has been overtaken by the Stomach Bug. It started with Avery, moved to Auden, then by Thursday morning I was camped out on our bathroom floor (the tile was nice and cold) praying for salvation. I even prayed to the Gods I learned about in my Roman Mythology class back in college, but to no avail. I didn't even lay around this much during the Swine Fu...this Bug was NASTY. Thankfully by Sunday afternoon I could actually stomach the thought of eating more than Fruit Snacks and jelly beans, because we have a very busy month coming up. Although last night the Stomach Bug claimed it's fourth and final victim, and now my husband is lying on the floor of our ONE (yes, we have only one) bathroom this fine Monday morning.

Since I have a bunch of laundry, errands, grocery shopping, etc to do this morning (don't hate, I know my life is uber-glamorous), I'm posting a video I took last week of Avery and Auden. If you even remotely familiar with my children, who we refer to as "The As," you know they apparently have more energy than your average caffeinated beverage...or so I've been told. Since the weather in The Lou has been F-reezing and snowy and our home is a whopping 900 square feet, there are not many places for that energy to go. Which is where dancing comes in. We love to dance! Although, I'm not sure THIS is what the Black Eyed Peas had in mind when they wrote this song:

Why I Run

2010-01-26T16:09:00.004-06:00

My husband likes to say that I Run Away from my Problems…literally. He’s right. But I haven’t always been this way. Granted, I’ve always run (although as I got older I would consider myself more of a “jogger” than a “runner”). In high school I did track, in college I ran for my Crew Team, in grad school I did local road races, and after that I just ran to keep the pizza from catching up with me. When I got married I pretty much stopped all together - if you know my husband Brian, you can understand why. In Hunting-Gathering Times, my husband would have just starved rather than put forth the energy to search for food. He takes the elevator to go DOWN one floor. Bottom line: the man does NOT enjoy physical exertion.

I’ve been running seriously for about a year now. Currently I run half-marathon races, (which is a fantastic distance for women with kids) and my friend Ali and I are determined to do a full marathon in the next year. Honestly though, I had not run much before I began training for the Delta Gamma Center’s Run for Sight last year. All of my personal pride from my running success has come about because of Delta Gamma. Now stop groaning! This is not another attempt to get you to join TEAM AVERY (yes it is, yes it is!!!!! Join TEAM AVERY!) Just listen to my story. Who knows, you might be tempted to lace up your shoes and go for a jog…

Like I said, it was preparing for last year’s Run for Sight 5K that made me start running again. As illustrious captain of the 4-person TEAM AVERY team (ahem, composed of 2 adults and 2 babies; we were quite a force to be reckoned with), I did not want to embarrass myself by not being able to complete a 3.1 mile run. My husband is perfectly fine with his couch potato-ness…I dare say he revels in it. Then again, the man can put in and take out kidneys, so does it matter? I still haven’t accepted the fact that I’m an “old” mom of two, so I was out to prove something…namely, that I was still an athlete.

Let me preface this by saying that I AM actually a very fit person! I did the elliptical before, during, and after both my pregnancies. I’m not saying I made it difficult nor that I didn’t slack off and read gossip magazines, but I got my lazy honkus in there. However, the first two weeks of running about killed me. I would run my 3.1 miles and feel like puking the entire time. Sometimes I took the double jogger out and ran, along to the chiding of Avery yelling “GO FASTER MOMMY!” (I confess, I did not have motherly thoughts about my daughter when she screamed at me like Jillian from The Biggest Loser.)

After a couple of weeks that can only be described as sheer misery, the running became easier. And then I noticed something. While the minutes passed and I jogged away, I started to feel lighter. Not physically: emotionally. It was like all the anger, the sadness, the loneliness and the fear began to lift off my shoulders. For the first time since Avery’s diagnosis, I didn’t think. I didn’t feel. All that was there were my arms pumping, my breath puffing, and my legs striking the pavement. For a small moment I felt like “Erin” again, the girl I was before the kids, before the diagnosis, before the sadness. The girl I was before life got hard. It was wonderful.

Reality was waiting for me at the end of my run, and life certainly didn’t get any easier. But on that run I finally found a way of coping with it…and accepting it. A few weeks ago we found out that Avery has one, possibly three new neurological issues going on…before I give a definite label, we are undergoing a bunch of neurological and genetic testing. It was just a heartbreaking day, followed by a night of worry and no sleep. That morning, I just ran. I ran for as hard and as long as I could, until my brain couldn’t think and all that was left were my arms pumping, my breath puffing, and my legs striking the treadmill. When I finished, I was able to handle reality again.

My problems are not better or worse than anyone else’s problems. And if I could go back, I would still beg to save my daughter from visual impairment. But I think that you can always find sunshine in the darkness. You may uncover a strength in yourself you didn’t know you had. You may rediscover an old hobby. Or you may just find a way to run away from your problems…even if it’s only for an hour.

2010-01-25T21:28:00.002-06:00

Avery's Story

2010-01-24T14:27:00.037-06:00

Pour a cup of coffee, sit back, and make yourself comfortable. This is going to be a long post...

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

2010-01-23T19:39:00.002-06:00

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

2010-01-23T17:48:00.004-06:00

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.