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


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

4 comments:

claire.straight said...

Stunningly beautifully written! I am speechless and so proud of my daughter and my granddaughter!

Anonymous said...

Hello Erin,
you dont know me, I went to school with your mom.Have been following your blog about Avery. my son is 36 and has Retinits Pigmentosa he had his sight till he was 26 then started losing it gradually. Over the past 2 yrs he has lost all his sight and struggles with many issues... My step son and his girlfriend lost their precious Lily when she was 1yr and 5 days. Lily was born at 27 weeks and just was not ready for this world yet.I will keep little Avery and baby Beatrice in my prayers. God Bless you

Friedje vanGils said...

Hi Erin-
Your Mom has always been my BFF, although we haven't seen each other in too many years. I know her well and see her influence (genetically and otherwise!) in your strength, your huge capacity to love and in your ability to express yourself. We do learn from our children, the best teachers a parent can have, and your amazing Avery is as blessed to be in your family as you are to have her in your life.
All the best,
Friedje

Missy said...

Hi, I hope you don't mind me commenting and that you still check back every once in a while. My son was born with a cataract. He wears a custom RGP contact lens in his aphakic eye. He has a pair of back-up glasses. I don't know if that is something you would be interested in hearing more about or not, but you can email me at missyadams@ymail.com if you do. My son's PO said that contacts give them a slightly better visual acuity.

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