I’m not an expert on anything besides Aurora, her life is what I know and I want to share what she has gone through in the hopes of making people aware of children with disabilities like Aurora. I also kind of hope to maybe connect with other families dealing with similar issues.
What is Septo-Optic Dysplasia (SOD)?
Septo-Optic Dysplasia to Aurora is 3 shots, 5 liquid medications, 3 powders and 1 pill every day. It’s sleeping only when her body is exhausted. It’s low muscle tone, difficulty gaining weight, and the inability to chew or form words. SOD to Aurora is difficulty standing and not understanding the motion of walking, rolling or crawling. It’s a higher susceptibility to infection and not being able to regulate body temperature. It’s high stress in simple tasks and a body that can’t properly cope with that stress. It’s total blindness, seizures, tests and frequent doctor visits. It’s 8 service providers and 5 doctors on her team.
To the general population SOD Is fairly unheard of. It’s considered a “rare disease” by the Office of Rare Diseases of the National Institutes of Health. SOD affects less than 200,000 people in the US.
About 8 hours after Aurora was born she stopped breathing, nurses took her from my arms and rushed her out of the room. We spent weeks in the hospital, no one ever actually came out and said “We don’t know why she is sick.” But it was obvious they were struggling to come up with answers.
The doctors were prepared to do a liver transplant on Aurora at 2 months old; they were convinced there could be no other explanation for her illness besides liver failure. Luckily, we (the family) noticed her eyes weren’t focusing, instead they would roll back or shift quickly back and forth. Not knowing the cause, we asked the doctors what that could mean. It was like we had lifted a veil. Suddenly instead of guessing at what could be wrong with Aurora they started doing a new set of tests.
An Endocrinologist explained her situation. He told us that a small part of Aurora’s brain (septum pellucidum) was underdeveloped. Honestly, I think I zoned out after that. I knew what was going on with Aurora now but my mind wandered in a million different directions, unsure of her future and terrified for my daughter.
It is now 5 years later and I still remember how every test they did and every tube she was hooked up to made me sick to my stomach. Hearing things like “multiple disabilities”, “hormone replacements” and “seizures” is understandably a little scary I think. There are no disabilities in my family history, no visual impairment, no epilepsy…before I had Aurora I thought the most I had to worry about with her was my stubbornness mixed with her father’s arrogance and intelligence.
Now I worry every day if she is growing properly. I worry about things like sodium levels and vitamins and foods with higher calories and good fats. I say things like, “Do you think her legs are the same length?” and “She only had one seizure today, better than yesterday.” It’s like taking all of the normal worries a parent has from day to day and throwing a house full of extra worries on top of that.
I think that’s what makes the good moments a million times better though. Like when I realized her favorite sound is when I try to imitate a race car. Or all the times she gets so excited just dancing and bouncing around the house with me. And my favorite is when she is just hanging out, looks like she’s maybe spacing out a little and then she bursts out in giggles, like she just had the funniest thought in the world but I will never know what it was. And I know, I’m a little weird because I love when she does that.
Aurora is this wildly amazing, interesting and complex little girl. She gets upset for seemingly no reason at all in the blink of an eye and it could take seconds to calm her or it could take hours. Her life has these wonderful high moments and then it seems something else gets thrown at her and we all struggle to bring it back up.
Earlier this year she started a new seizure medication called Sabril and it was like all of her energy was suddenly back and she was excited to learn again, to make progress. Her strength came back, she was laughing again (something we hadn’t heard for almost 2 years). We got her standing with minimal support and that was one of her wonderful high moments, you could see in her face how proud she was of herself. And then it stopped. She became scared of standing; couldn’t find the motivation anymore and at this point we’re just trying to figure out how to make her feel comfortable with that and give her the motivation she needs to be more independent.
Standing is now one of many things that cause Aurora stress, her doctors feel that she may be “finding her voice” in a sense, basically saying that she is now showing signs of my stubbornness that I was worried about. She doesn’t like to sit in a chair unless she is eating. She is VERY picky about food, one week she likes pasta, and the next she looks at you like you must be insane for trying to feed her it.
She has recently decided that she absolutely will NOT lay on her stomach, be held with her back to you, or put her feet on the floor. And while it usually ends in loud glass shattering screams, we still try to find ways to get her comfortable with these things.
The hardest thing with Aurora is trying to teach her without stressing her out too much. Her body is incapable of coping with stress so when her stress levels get too high it’s dangerous. She takes a hormone replacement for this and that too is not good for her body in high doses. Which leaves us in the uncomfortable (never perfect) balancing act of wanting to make things as fun and beneficial as possible for her while still kind of pushing her in the right direction, just not too far.
Something that I wish everyone who comes into contact with Aurora would do, is close your eyes. Close your eyes and think about the sounds around you, think about what would bother you if you didn’t know what it was. On top of that, think about how it would feel if someone grabbed your hand and you couldn’t see them or touched you at all without saying anything. That happens to Aurora all the time, sometimes it is providers who forget to introduce themselves before touching Aurora, other times it’s kids in her classroom banging on a drum and it scares Aurora.
It’s hard to fully understand how the world “looks” to Aurora because she can’t tell us but I see her cues, her frustration and sometimes it makes me angry. It makes me angry because normal people think normal things like, “Why can’t they get that kid to stop screaming or just leave.” And I think things like, “If that couple next to us would just stop scraping their forks against their plates, Aurora would calm down.”
Okay, maybe angry is too harsh of a word. It annoys me. Just like it annoys me when other mother’s talk about how little sleep they have gotten. I constantly feel the urge to be like, “6 hours?! I would sell my car and all of my shoes just to get 6 hours of sleep right now!” Aurora has been on an infant’s sleep schedule for 5 years now. Her neurologist calls it Circadian sleep disorder. So, basically she is a pro power napper but rarely sleeps for longer than 4 or 5 hours at a time and those 4 or 5 hours could be at any time of the day.
We play this game, it is called wake mommy up to pterodactyl screams 20 minutes after she went to bed. It’s a fun game and she laughs, she knows what she’s doing. I am almost positive I have gone 3 days with a combined hour of sleep…almost positive. I will say though, you get like WAY more done when you are sleep deprived and on your seventh wind than you do fully rested.
We are very lucky too, Aurora and I have the best support anyone could ever ask for. She has 3 uncles and an aunt that love her like crazy and grandparents that I have my suspicions; would like to steal her and move to Fiji. I love Aurora, I love everything that comes with Aurora, and I love the support that Aurora and I have.
My one piece of advice to parents with children like Aurora would be to keep moving forward, no matter how many times it seems like things are regressing, keep pushing things forward and don’t let anything stop you from helping your child have a full and happy life.
(I know this was long and I promise I’ll keep it shorter in the future. 😉 Thank you for reading! Comment, share, follow…be awesome.
More on SOD, IEPs and our crazy life coming soon!