So nice to meet you!

So nice to meet you!

In fact, most of you logging on to this page already know my daughter, Ava.   Somewhere between the delivery room and the parking garage of the hospital as we left, I became known as “Ava’s mom”.  I had no idea what I was in for back then.  I was a mother and not even old enough to rent a car.  I was a mother who was no where near completing college.  I was a mother with just enough money for bills and diapers.  I was a mother of a special needs baby.  Regardless, I was ECSTATIC when I traded in “Paige” for “Ava’s mom”.

Moms really do have a special intuition about their children, and the one I’ve developed with Ava is down right frightening sometimes.  The first experience I had with it was about five months into my pregnancy.  I started having nightmares that my stomach was trying to escape from my body and take the baby with it.  The worst nightmare was so real that I woke up sweating and in pain, and I THOUGHT I saw my abdomen shaking.  She needed me and I couldn’t help her.  Shortly after that, my 19 week ultrasound showed some concern, so I was sent for a “better one” nearly two hours away in Jackson, MS.  The better one revealed that my baby had severe congenital scoliosis.  Ava had positioned herself in such a way that it was impossible to see most of her brain, yet I was assured that the scoliosis was my only concern.   I was told the shaking abdomen could have been infantile spasms – very common in fetuses so young and even newborns.  “She’s otherwise healthy,” I was told.  “We can rule out 87 percent of abnormalities.  She’ll possible have back surgery, but nothing life threatening.”  It didn’t matter, though.   I was devastated.  I waited until I got home and made all of the expected phone calls to reassure everyone that she would be okay.   I lied to everyone.  I told them exactly what was told to me, but Moms know better  and I could feel  it.  I waited until late that night before I cried, but all I could think about was how she wouldn’t play sports.  She wouldn’t be a cheerleader…she would probably have scars on her back from surgeries.  I am so ashamed at myself for hurting so much over her imperfections, and for not realizing it can always be worse (and in our case, is).  We ALL want a perfect baby, but God never allows it, thank goodness, because as I know now that wouldn’t be much fun! 

Ava Brooke was born on May 31, 2006.  She was a healthy weight despite an early arrival, and there were no visible indicators of something wrong other than a strange mark on her head.  The pediatrician at the hospital (not our regular) assured me that the mark was a temporary injury from the delivery (she didn’t want to come but we forced her out…bless her heart).  We went on our marry little way, mom and baby, happy and perfect…but not really.

On August 8, 2006, Ava began to seize.  She was rushed to the hospital nearest to us (in Hattiesburg, MS) and by the time she reached her 50^th seizure of the day she began having trouble breathing and the staff had trouble controlling them.  She was sent to UMMC in Jackson, where she was probed and prodded and observed ….and eventually diagnosed with Aicardi Syndrome.  I was told that she is missing her corpus collosum (the middle part of her brain), is legally blind, would never walk or talk, would have a battle with seizures her entire life, would live like an infanct, would have lung trouble,  she would have stomach trouble…and if we were fortunate, she’d live to be 8.  I wouldn’t let the doctor’s tell me very much in front of my family.  I asked one of the neurologists to finish telling me in the hallway.  Even if for a few minutes longer, I didn’t want the whole world to know that my baby was sick.  I thought, she deserves to be loved.  She deserves to be special for something else. I was so wrong! In fact she is loved very much.  She is incredibly special and gifted THANKS to Aicardi Syndrome.  She has proved me wrong…that stinker. J

In her 5 year life, Ava has fought a variety of spinal, vision, gastrointestinal, breathing and organ growth problems, and tangled ribs (a problem that had to be solved by removing one).  She’s had a trache and currently has three titanium rods supporting her spine and ribs.  She receives all nutrition through a feeding tube due to aspiration.  She seizes every single day, an average of 3 times daily.  She takes 2-4 medications daily.  She’s spent every holiday at least once in a hospital (we like to call them our vacation homes).  Two weeks ago, Ava completed her 8^th surgery – each having total success (she’s pretty amazing, I tell ya…). She’s received speech therapy, occupational therapy, physical therapy, and special instruction several days a week since September 2006.  She breaks my heart and builds me up all at the same time.  She rarely reacts to pain.  Her brave spirit is INCREDIBLE.  I don’t think Ava realizes her ailments aren’t the norm (so nobody tell her!), and she tries so hard to be the same as all of us.  Because of that, she has inspired so many other people. 

Ava doesn’t know how to speak, but she still speaks to all of us.  Her brothers Dylan and Connor have a bond with her that seems other worldly.  Her Popi makes her smile, and treats her as an equal (what every human deserves), and me? Well, I know now that she’s going to be alright…we are ALL going to be alright.  I can’t wait to open up our life to you, and I pray that she encourages you as much as she does us.  No gift deserves to be wasted, especially one like hers. See you again soon ;)