Yes, there are angels among us. We have one upstairs!

Last night, our 6-year-old son Connor called his dad and me into a top secret meeting in Ava’s room.  Big brother Dylan wasn’t allowed to hear anything, nor the cat or dog. Ava?  Well, she was missing (or so he thought.)

“Mom.  I know Abuh’s an angel.  I know she knows how to pop her wings in and out so that nobody can see them.  I know that she leaves her room at night to fly.”

He paused, looked me over for signs of doubt, and then proceeded.

“And now I know how she does it.” 

You see, a few years ago whenever Connor first met Ava (they are step-siblings but they have no idea!), he needed an explanation for the two vertical scars that ran along the length of her shoulder blades.  The scars were remnants of Ava’s first back surgery, and at the time were a rather sore sight to see on an otherwise perfectly healthy looking child. It was the first time we were able to see on the outside of her body a reminder of the chaos happening on the inside.  In the days following Ava’s surgery, I would tell her stories about how she used to have wings (because she’s an angel, of course) but that she didn’t need them on Earth so the doctor decided to remove them and keep them safe in a closet until she was ready for them again. 

When Connor came into our lives, I shared the story with him, and as it usually goes he decided to tell me the rest of the story…a little bit here and there, and continues to do so.

What we came to learn from Connor is that Ava got her wings back.  He explained to us that she needed them now to practice flying, so one night he helped her get them back and put them on. “Okay…well, where are they?” I asked.  “MOM! She knows how to pop them out and then pop them back in to keep it a secret! Duh!”

Next, he shared with us that when we sleep, Ava gets in her flying hours.  When she injures herself in real life, he tells us it was really a flying accident injury but that she didn’t want us to know in case I were to have her wings taken away again. One thing he could never decide for certain though was how she would get out of the house.  A theory he seemed to favor the most is that she would go through his window and then leap off the roof. He even thought he might have heard her once or twice, as clumsy as she can be.

When we were summoned into the top secret meeting and sworn to secrecy, I had no idea we were going to hear more details of our daughter’s secret life.

“You know how she does it?” I asked him. “Does what, Connor?”

“I know how she escapes!”

He squealed and then hushed himself as he pulled back her curtains and showed to us the tiny spot of broken window damaged by Hurricane Katrina, repaired with a plexi-glass shield, and then long forgotten. Piece by piece he lifted it up until a small breeze of air could make its way through.

“Do you see this? She’s been leaving through this hole! And she’s not in here…I think she has already left!”

Ava hadn’t left, in fact she was downstairs on the living room floor scooting herself in circles, but Connor didn’t believe it. He had worked so tirelessly to find out the how to the mystery of Ava the Angel, and tonight, he struck gold.

“She changes herself into bug size so she can get through this hole and go discover new bugs.  That’s just what I think.  I’ll ask her when she gets home.  Dad, do you think bats will eat her? Will they know she’s not a bug?  Maybe they will see that her head still looks like Abuh.”

Friends, I will tell you this.  There is unexplainable joy in having a child with such a creative mind and compassionate heart that he can dream his special little sister into being something so….angelic. There is hope to be given in having a child that will search his life away for all the answers about Ava that most of us don’t even think to ask.

A little later on Connor came downstairs and found Ava still wiggling on the floor. 

“Dad! Abuh’s home now! I think she crashed down here or something. Abuh are you o-tay?”

He jumped down near her lap to debrief her.  What did you on your adventure, Abuh? Did you change into bug size? Did a bat eat you? WHAT? An OWL tried to eat you?  All the while she coo’d, her grin grew larger, and she answered him with her infamous thumbs up.  Drew and I listened to the two of them ‘’talk” for a little while and I laughed at his silly translations of what she was saying.

When he finished, he scooted closer to her face and turned his ear towards her, lowering his head so that we could barely hear him. 

“Do your angel call, Abuh.  I want to learn to how change into one.”

I had to know more. 

“Connor, what’s an angel call?”

“It’s a sound angels make when they talk but you can only hear it when you’re an angel.  It sounds like fffffiisssss ffffissss. I can hear if I try really hard.  That’s just because one day I will be an angel with her.”

It’s hard for me to keep from crying when he says things like that.  I can’t wait to hear the call one day, too.

Nothing's forever, not even tattoos.

“Nothing’s forever, not even tattoos.” – Kat Von D

AHHH!!!! It’s the SERIES finale of L.A. Ink tonight. Kind of depressing. Do any of you ladies remember how empowering it felt to watch Kat Von D begin her journey into running her own tattoo shop? I don’t like to see the ending to anything…a good book, a good T.V. show…but I can’t think of any better way for this show to end than with a spotlight on the D’Ortenzio family. You see, Mario and Kerry D’Ortenzio are very special parents with a house full of beautiful daughters. Their daughter Reese has Aicardi Syndrome, just like our little Ava.

 DEATH2LIFEREVOLUTION

Our Angels

I came across the D’Ortenzio family only very recently and when I found out they would be on the show getting tatted up and promoting sweet Reese and their ministry, DEATH2LIFEREVOLUTION, I felt a huge swell of pride! I encourage you all to watch tonight’s LAST and MOST SPECIAL episode of L.A. Ink on T.L.C. at 10/9 C….and get your box of Kleenex ready.

Oh, and to Mario and Kerry – you do realize you’ll be famous when you wake up tomorrow morning, right? Last. Episode. Ever. I’d like an autograph, please and thank you. ;)

Here’s a snap of my first and only tattoo that I got when Ava was a tot, reminding me to keep my faith and my chin up!

This week in general has been all consuming with Aicardi – educating.  In one day’s time, I was asked for info by an X-Ray student (wanting to see prints of Ava’s scoliosis and kyphosis…odd combination!) and a friend who’s studying to be a child birth educator and birth doula, both interested in hearing Ava’s story.  Every mother loves to talk about her kids, but I especially love to be approached with these types of questions. Not that validation is needed, but it makes a mommy like me proud to know that my daughter’s differences are helping others learn. She is an amazing teacher!

Jennifer Goodwin (my super smart – super hero – super mom friend) who is studying to be a birth doula, asked me a question I’ve been waiting to be asked for years now: Would you rather know your daughter was sick before she was born or let it be a surprise?

For those of you who know our story well, you know I was both informed and surprised. In brief, I knew something was off with my pregnancy. I was deemed high risk in the fifth month, and sent off to a better hospital for tests, only the tests showed congenital scoliosis and nothing more. Ava was settled in the womb so perfectly that a clear picture of her whole brain wasn’t visible, so we assumed that there was nothing wrong, and never that her whole brain wasn’t actually whole to begin with.

When she was 11 weeks old, the seizures began.  Shortly after, the official diagnosis came. I’ve often tried to figure out on my own which of those two periods in my life were the scariest, and I still don’t quite know.  You see, when I was pregnant, it hit me hard to learn that my baby may not be perfect. Guilt, fear, anger…all of it ruled over me for a few days. After being told she would have congenital scoliosis and would live a life with surgeries for rods instead of becoming a super star athlete, I was depressed. I was heartbroken, but I knew I needed to know.  There was nothing that could have been done to prevent or change Ava’s circumstances, but I’m glad I had that time to grieve.  Oh yes…I grieved. Hard. I had lost a dream I had for my child. I’m happy I had time to prepare for what kinds of things a life with her would bring to us.  I see it like this, other moms buy every baby book in the world in preparation – I researched until I had an idea of when Ava’s surgeries may have to begin, how much of a curve was safe, and what her life in general might entail. Potato, Po-tah-to.

When the seizures began and she was diagnosed with Aicardi Syndrome, I did feel that pain all over again. It was gut wrenching to know that all of my preparation would be nowhere near enough to prepare me for what was to come and what was happening, but at the same time it did prepare me for the acceptance of imperfection.  More dreams for my daughter were taken from me that day, but by the second-go-round I had a better grasp and understanding that God makes no mistakes, and that his dream for her is bigger than mine.

When Jennifer was asking me about it, she brought up and excellent point: Most women who are given warnings of abnormalities during pregnancy and later find them to be false alarms. When my OB suspected something was off, he sent me to Jackson without saying exactly what he suspected or really that he suspected anything major at all. That vagueness was critically important, and I appreciate it.  Dr. O’Neal let me know that he wasn’t getting as clear of a view as he would like and then sent me on my way to be viewed by better machine. I’ll say it again - that was, hands down, the best way to handle the situation I was in. I was concerned, yes. I was wise enough to know you don’t just go and see a specialist without reason, but he didn’t leave me thinking the worst. Oh...and as far as the worst goes, I’ve learned it’s better to be prepared for it but pray for the best, and when you end up getting what you had once thought was your idea of the worst, remember it was always God’s idea of the best. Ava is definitely the best.

Ava's X-ray pre-placement of Veptr rods

Ava's X-ray post Veptr surgery

I’m glad I knew what I knew before she was born, and I’m a little glad I didn’t know anything more. It was definitely enough to have my feet yanked out from under me and be told that she would be different, but I’m loving this journey of discovery we’re on now. There’s a reason God sends people, like wonderful doctors, etc. to prepare us to an extent, but there’s also a reason he doesn’t reveal it all to us at once. I highly doubt two machines at two separate hospitals fluked due to coincidence. God just didn’t want me to know it all right then.

The Story of the Sun

     Whenever I first considered writing this blog, it took me seconds to come up with a name for it.  I sat on the couch writing down my frustrations of the day in my notebook - for some reason writing them down makes coming up with solutions to correct them easier.  Connor and Ava were at my feet playing with her Littlest Pet Shop Toys. He tossed them onto her lap and called them grenades.  The Pet Shop animals were at war, and she didn’t like this.  “Connor, sometimes little girls don’t like to play the same things that little boys play.”  He thought about this.  “Well what do they play? Does she want to hear me sing?” 

     Connor never sings.  The morning before his first preschool holiday program he announced to me that he would not sing, just pretend to.  He went on to explain that my mom showed him how to say “watermelon, watermelon” over and over again so that no one would no one would know he wasn’t really singing.  When he asked if Ava wanted to hear him sing, I said yes, because it’s what I wanted.

     He scooped the Pet Shop toys off of her lap, put his elbows on her where they had been, and began.  “You are my sunshine.  My only sunshine.  You make me happyyyyy when skies are gray.  You’ll never know ABUHHH how much I love you. So please don’t take my sunshine away.”  He backed off of her legs and looked at me, but I was staring at her staring at him, eyes wide open and her face smiling.  “There. Is she happy now?” he asked, right before igniting the Pet Shop grenades again.

     I thought about the Freudian affect. How we say things we mean but don’t mean to say it.  Why did the boy who cares nothing for music or lyrics pick that song to sing to her? To hear him sing it to her was intriguing.  He loves her, and I know this.

     A couple of weeks into blogging, my husband teased me over this title.  “Am I not your sunshine, also?”  I got what he meant – it did sound a little bad if you think about it that way.  I told him about Connor singing the song to her.  He understood.  He knows that I couldn’t imagine life without him and our boys.  He knows I love and need them like I never expected to love and need another.  But you know what? I might have been experiencing some Freudian nonsense, too, because there is only one sun in our solar system, and she became mine the second God gave me the responsibility of her.

     I’m sketchy on facts about the sun, but I do know this: The sun has rays that grow us, warm us, and complete us.  It gives us energy to live.  It gravitates planets to be pulled around it.  The sun spills over with energy absorbed by plants, consumed by animals – the process continues.  We grow because of this sun.  Ava makes us all grow.  I can hear that in the words you all write to me about her.  I was dying without the responsibility and life she brought to me, when God allowed me to pass life to her.  I really don’t even like to remember my mindset before then.  The sun has a core, in which the power of fusion occurs and causes it to shine.  Ava’s core is God.  He makes her glow, and we all feel the warmth.  The sun has blemishes, also, dark spots that thousands of years ago the Chinese mistook to be birds flying in front of it.  We don’t know why these sunspots exist.  Ava has blemishes, spots of imperfection that come in the form of seizures, and other disabilities, so incredibly visible to the naked eye yet we don’t know why she was created with them.

     I don’t know what the sun needs to exist. I just know I need the sun.