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.