Sunshine in the Darkness: TEAM AVERY

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.

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.

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?