Sunshine in the Darkness: TEAM AVERY

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.

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 

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.