Wagnermania: Capture Me Photography

Several months ago a photographer, Danielle Bowman, with Capture Me Photography contacted me and wanted to do a piece on children with special needs. She has a 4 year old daughter, London, who has special needs and she wants to raise awareness about how amazing these kids are. That they are not scary or weird that they are little fighters with beautiful spirits. I jumped at the chance to get Georgia's story out there. We also took the opportunity to get some family pictures done while we were at it. Danielle posted this wonderful piece in her "Greater Than Average" series (the formatting is a little different because it didn't transfer to blogger very well but its close). It is so beautiful I had to share. Here it is:

Georgia! Oh what a doll!! Hers was another family that just seemed so warm- and I've come to realize that this is a common trait in families like Georgia's and so many others that I've met over the course of 4 years. They are just instantly accepting. I think part of that is because they probably know what it's like to be UNaccepted. So let me tell you about this little peach (sorry, Emilee, I couldn't resist the puns!)

Georgia's a miracle... and it all started before she was born. When Georgia's mom, Emilee, was 21 weeks along in her pregnancy with Georgia and her twin, Eden, she went in on Christmas Eve for an ultrasound. She was told that Baby A (Georgia) had a condition called Hydrocephalus, meaning there was fluid on little Georgia's brain. Emilee was told that the worst-case scenario was a simple shunt in Georgia's brain after birth to drain the fluid. Emilee was told to visit a perinatologist and an appointment was set up for the following week- New Year's Eve.

At that appointment, the world was changed completely for Emilee and her husband, Darryl. They were given the heartbreaking news that it wasn't just fluid on Georgia's brain... she didn't HAVE a brain, a rare condition called Hydranecephaly. They were told that Georgia would survive until birth, but would not live for long after that; perhaps only minutes, maybe days, but no longer than 6 months. The doctors told Emilee and Darryl that there was no hope, and there was no mistaking it.

Emilee and Darryl grieved for the loss of a child that wasn't even born yet. They planned a funeral and purchased a burial plot. They planned for something no parent should have to experience, the death of a child. And Emilee was still pregnant. They hoped that they would at least get to bring Georgia home for a while.

Emilee was induced at 36 weeks because of concern over Georgia's head size. Since she was Baby A, she was born first and immediately taken away to the waiting NICU team; Darryl went with Georgia. Only moments later as Emilee was delivering Baby B, Eden, Darryl was back by her side. He shared the good news that Georgia was doing okay. She was breathing on her own- something they were told NOT to expect at all.

Georgia was already beating the odds that were so heavily stacked against her.

Georgia began eating on her own and she was able to stay in the well baby nursery with her sister. Emilee and Darryl were able to take the girls home... but they didn't get to stay there long.

The next day, Georgia crashed. She was unable to keep her oxygen up, she stopped eating, and couldn't maintain a healthy temperature. They took her back to the hospital to get her stabilized and then thought they would have to bring her home and watch her die. After being in the hospital for several days, Georgia's neurosurgeon came in and told them that the prenatal diagnosis of Hydranencephaly WAS wrong after all. The doctor said that she did in fact have Hydrocephalus and if they put in a shunt, which they did at only 13 days old, Georgia may go onto live a perfectly normal life.

Along with this news, Emilee and Darryl also learned that Georgia has a condition called Sept Optic Dyplasia, which means that her optic nerves are small and she is visually impaired.

When Georgia was almost a month old, she finally got to go home again. Home life however proved to be stressful as she was an unbelievably fussy baby. She would sometimes scream for 20 hours out of the day. She would only sleep for about 2 hours at night and 45 minutes during the day. At almost 6 months old, it was discovered that Georgia had horrible reflux and a Nissen fundoplication was performed.She was finally calm and peaceful.

When Georgia was 10 months old, an MRI revealed that there was more going on with her little brain than just Hydrocephalus. Georgia's brain just didn't develop correctly. She has a small rim of cerebral cortex around the outer edge of her skull but most of her brain is filled with fluid. Her brain stem is small and malformed and her cerebellum is small. Her doctors have never seen brain anatomy like Georgia's.

Georgia is severely disabled; she is unable to lift her own head, roll over, sit up, crawl or walk. She can't communicate other than with cries and rare smiles- and, of course, those small things like facial expressions that only her family can see.

A typical day for Georgia consists of waking up between 3 and 4am. She stays in bed until around 7am, then it's a bottle and stretches for about an hour and half. There's usually some physical therapy then Georgia takes a nap. (There's no rest for Emilee, however, because that's about when Eden wakes up). After getting Eden her breakfast, Georgia wakes up and has breakfast (miraculously, Georgia eats orally- something she was not expected to do). After breakfast, the girls play together. Eden LOVES Georgia and such a great sister. She loves to give her toys to play with and she also takes very good care of Georgia. When Darryl gets home from work, Georgia just beams!! She loves to play games with him- her favorite being one in which she will drop her head forward so that she can get praise when she tries to lift it back up!

From Emilee: "Its been quite the roller coaster ride. Every aspect of our lives have changed. I used to be a very successful corporate attorney but gave up my career to stay home with the girls instead. We used to never have to worry about bills and now its a daily concern. I think the biggest effect on our lives is just the sheer exhaustion my husband and I both experience. Georgia doesn't sleep much and requires a lot of care and we still have a "normal," healthy very active 2 year old to look after as well. While its not an easy life, we see Georgia as a huge blessing to our family. The peace she brings us is like having a little piece of heaven in our home. I know everything that has happened with Georgia happened for a reason. If I hadn't been told that she was going to die, I wouldn't appreciate her condition now. When people ask me how Georgia is doing I tell them, 'Great. For a baby who's supposed to be dead she's doing fantastic.'

I worry that Georgia is bored because of her limitations. Most of her day is spent just sitting with me and playing with her sister. But I think she is happy and content. As for what my life is like, as you can imagine, its crazy and hectic and nothing like what I thought it would be. Raising twins is one thing, but then adding a special needs child into the equation makes it that much more difficult. I love my kids more than anything and I have the best husband in the world. Its not an easy life but its definitely worth it. Georgia has never said a word but in one look I can tell that I am her whole world and she is mine and that's all I need."