Before Avery made her dramatic entrance, I had a career that I enjoyed very much. I had graduated with a (very useful ;) liberal arts degree and then went on to a graduate program that specialized in the business side of fine arts. Ever since I was a little sugar bee myself, I'd wanted to be involved in some capacity with art and design; but in college, I came to feel like my talents lay more on the business side than the artistic side.
After graduation, I was lucky enough to get a job working in public relations and marketing with Houston Ballet. And I loved it. I wouldn't have guessed in a jillion years that I would land a job in the performing arts rather than the fine arts, but the position provided an amazing opportunity-- and even a little design work. Most specifically, the Houston Ballet website.
Oh, that website. Before taking the reins, I had only dabbled (in college) in Photoshop and HTML. I might not have understood it at the time, but this crash course in the upkeep of a large site (AND the mountains of trial and error involved in teaching myself to use Photoshop in a professional capacity) would leave me with the tools I needed to work in digital design. However, I am getting a little ahead of myself...
After a couple of years of working at the ballet, my husband and I learned that we were pregnant with a baby girl. We were thrilled beyond words! I had a ton of fun preparing for our new addition, and then in January of 2008 we were blessed with sweet baby Avery. The surgical delivery went well, but within an hour of her birth I was surrounded by a number of doctors with very serious faces.
They were concerned because it appeared that our precious newborn daughter was having small but frequent seizures while under observation in the nursery. My husband and I were absolutely shocked and terrified. Immediately, the doctors sent her away to a bigger hospital with a higher level N.I.C.U. We tried to think happy, healing thoughts as I recovered from surgery and we waited to hear a diagnosis. We were nervous to say the least, but nothing could ever have prepared us for happened next.
The doctors explained to us that Avery had been born with a rare genetic condition. She was missing the proteins that regulate cell growth, that act as tumor growth suppressors. This allowed benign tumors to grow willy nilly in her brain and heart. You know, only the most vital organs in her little body! She had many of these growths in the left side of her brain, which were causing massive abnormalities and resulting in seizures. She also had a few in her heart, but they were not affecting her breathing, and we were told they would eventually disappear. Small victory. The ones in her brain, unfortunately, would not just go away.
So that's when Avery's brain surgeon appeared. Yep, my daughter has a brain surgeon. Surreal. And that's when we found out that our newborn needed a radical brain surgery that was meant to end her seizures, or she would not survive. Before we could even begin to digest this information, the surgeon went on to explain that he had never performed this surgery on a baby less than nine months old, and most of his colleagues had told him he was crazy. But that it was her only chance.
This is the part where I have to pause. And breathe. Because more than two years after the fact, I can still feel the residual effects of this man's words pulsating through my mind and body. I can still close my eyes and remember the breath stealing sobs I cried as I said goodbye to my week old daughter and heartbrokenly handed her to the nurse that would take her to the operating room.
And you know what? This little girl did beautifully. Her strength amazed us. It still does! She was in and out of surgery three times in her first month of life.Her daddy and I had to wait anxiously each time, (with an abundance of our family and friends :) praying that this was the right decision.
It was.
Our precious sugarbee came home to us after one month in the hospital. We were told by the doctors that there was really no way to predict her future as far as cognitive and physical ability; but the upside was that the earlier the surgery, the better-- i.e. giving the "normal" side of her brain time to take over tasks that the opposite side can't handle anymore...and we couldn't have done it any earlier! More on her surgery HERE.
Avery would actually need two more brain surgeries, at three months of age and at five months, before we saw her last infant seizures. We counted our blessings every single solitary day that Avery's seizures were at bay for more than four years. Unfortunately, they did return in August of 2012. Less than a year later, they are under control again with meds.
My heart aches constantly for those mothers currently searching for an end to infantile seizures and spasms. It is a black hole of constant meds, false hope, desperation and fear. No one deserves to be there. No one.
So it is always with a heavy heart that I explain Avery currently has freedom from seizures, but we have to remember it could be gone tomorrow...and in such instances as this, our little family has to focus on TODAY. Today, she is healthy. Today, she is growing like a weed. Today, Avery is working harder than you can ever imagine to accomplish her goals.
Just like any other parent, my husband and I want everything in the world for our cherished daughter, and we will do everything in our power to get it for her. That included leaving a job that I had no intention of leaving. I needed to be home every day with my daughter to get her better. In order to help Avery reach her highest potential, I've become her very own special needs advocate. The therapy appointments certainly don't schedule themselves! I mean, who else is going to sit on the phone for hours with the insurance company?!
It's definitely been a continuing adjustment in our lives, and we have done it with the love and support of our friends and family. In 2009, I started a blog about Avery, so that those friends and family could keep up with her progress. I really enjoyed taking what I had learned using Photoshop at my previous job and utilizing it to design our little blog. Not long afterwards, we found an amazing preschool that could help us help Avery reach her potential. Our girl fell immediately in love with said school, confirming our decision and giving her advocate mommy a little time off during the day. HENCE, I took my designing to the next level and started doing photo cards, greeting cards, birthday invites, and even a few wedding invitations with my newfound skills. The rest is history, they say; and I say I am very impressed that you made it to the end of the loooong version. In reward, here are some photos of our gorgeous (if I do say so myself) now FIVE year old sugarbee, and even one of her in a brand new role: big sister!
