Something Chocolate Can't Fix: About Deja

Deja Marie

My name is Deja (yep, just like Déjà vu), I was born and raised in Salt Lake City, Utah as the first born of my parents Diane and Dennis. My parents had a gut feeling something “wasn’t right” about 7 months into my life. When I was just 9 months old I suffered a seizure and was admitted to a local children’s hospital for testing. What came out of the testing was the determination I was born with a rare neurological condition called Spasmus Nutans. This condition is rare but lasts only through the first stages of development (normally not past one year). The condition itself did go away but in the process I developed nystagmus and cone-rod dystrophy, along with severe myopia (nearsightedness). In short, I was diagnosed as being blind at 9 months old.

I grew up having a very “normal” life and had great parents who encouraged me from the beginning to be actively involved in life. My mom was/is a dance teacher and I couldn’t wait to start dance class. Her studio used to be in the basement of our home and I would sit at the top of the stairs, in my leotard, tights and leg warmers and cry because I couldn’t dance (I was not even two yet, the age I was told I could start). The second I turned two I started dancing and haven’t really stopped since. I did attend a school for the blind for one of my preschool years but transitioned into public school by Kindergarten. My childhood was happy, fun-filled, active, busy and full!

My little sister Ambree rained on my parade (after all I was the only child, and a spoiled little girl) when I was three by being born (lol). I grew to love her quickly though as she made the PERFECT doll for me to haul around, dress up, teach dance classes to and torture really. My parents soon found out that she too was blind (despite the fact my parents were told my eye condition was not genetic in any way). Surprise! My parents now had two blind children! We were cute though so my parents didn’t mind too much.

As a blind child you would assume I grew up reading braille and using a cane. Nope! I carried around HUMUNGUSLY large textbooks to and from school (some bigger than me) with extremely LARGE print. I hated those books so much and early on developed a hatred for reading (sad, right!?!). I was always pressing my face to the pages to read, which made me slow and gave me headaches long before I even knew what a headache was. Because I have some vision, a cane was never a suggestion for me. I did get around pretty well most of the time…unless the lighting was too bright, or it was too sunny, or there were stairs, or too many shadows or…you get the picture. I got around, yes, but it was something I always had to think about.

I survived school with mediocre grades (even though everyone told me how amazing I was for these average grades—I didn’t agree). I graduated high school in 2001 where I was a cheerleader, in the choir, in drama club, the lead in a school musical, a writer for the school paper…I loved high school.

I also always knew I wanted to go to college. Starting college was a HUGE wake up call for me, holy moly!

I graduated from Utah StateUniversity in 2005 with a degree in Journalism. I loved the college experience, all of it! However, I was very much going through an identity crisis. My vision was getting worse and now I felt like I was walking a tight rope between the blind and sighted world. In fact some days I took a cane to school and some days I didn’t. That’s NOT at all confusing to anyone around me, right!?! Ugh. That was a hard time for me for sure.

I married my high school sweetheart during my junior year of college, in 2004. Z had just got back from serving a mission for the Church of Jesus Christ of Latter-day Saints and he moved to Logan while I finished school and he worked. A week after we got back from our honeymoon my invincible dad was diagnosed with a brain tumor called a medulloblastoma. It was the most heart-wrenching thing I’ve ever been through. My dad was NEVER sick and this just seemed impossible to me. My dad spent many weeks and months, after a pretty complex brain surgery to remove his tumor, fighting the cancer with massive doses of chemotherapy and radiation. He was the epitome of strength and courage and faith during this battle. I was always amazed by him when I would come down from school to visit.

Back to my first marriage, this is important for our infertility blog because it was after we were married when I first heard the word, “infertility” maybe, ever. But at least the first time I heard it and my name in the same sentence. Honestly, I didn’t think that much of it at the time I just didn’t believe someone 21 years old could be infertile; I mean come on, really? Plus, my dad was freaking fighting cancer so infertility was nothing.

I should back up a bit and say that the day, literally, the day I started my period I had problems. I was 12 years old and FREAKED OUT (like every other teenage girl) that I was bleeding from there, ew-ness! I wished then (and many times since then) I was a boy! But the problem was that when I started at 12-years-old, I NEVER STOPPED. I thought this was bull crap and pretty rude of God to do, but I thought it was normal so I went on with life. Until a month into it when I had bled way too long and way too much and my mom found me on her bathroom floor in a pool of my own blood. What a way to start the teen years, eh? I was taken to the ER right away and whatever the procedure was for these kind of things, they did (I don’t really remember much other than my ER nurse was the mom of this guy at school I had a big crush on...SO LAME). I was put on birth control from day one. I remember thinking one morning taking “the pill” that this was against my religion (I thought taking birth control meant I was sinning) but I didn’t want to almost die again so I had to take it. This makes me laugh now…

Back to being married, the first time (we’ll get to that later). I was told quickly after we were married that I had endometriosis. Again, something I’d never heard of but now know a heckuva lot about. This is not uncommon, many women deal with this condition and many go on to have healthy, happy pregnancies with it, some do not. Over the years endometriosis has caused me to have a couple of different surgeries, minor procedures really, but surgeries none-the-less. This would prove to be a significant factor in my fertility story later on…

Z and I did not get pregnant while we were married, even though we never used any form of birth control. I honestly don’t remember if we ever went to a doctor about “infertility” we may have just talked about on the side. However, in the back of my mind, like a slide show, were clippings of all the troubles I’d had over the years, all the times I lost so much blood I was hospitalized, all the surgeries, a small cancer scare, a lot of pain, shots, medications…it all ran through my brain and I just “knew” fertility would not be part of my life. That marriage ended after three years, for various reasons that won’t be shared here (sorry all you people who love a good story full of dramaJ); becoming a mom was put on the back-burner after my divorce (for obvious reasons), although it was never really far from my thoughts…

I soon moved to Louisiana to attend the Louisiana Center for the Blind, a training and adjustment center for blind adults. It’s a nine month program that gives students all the blindness tools necessary to find success. My decision to go live in Louisiana and live at the residential training center was, by far, the smartest decision I’ve ever made (yep, even more important than marrying my current husband because it lead me to him). I learned to read braille, travel with a cane, work with power tools (which I LOVE to do now), cook, use a computer with a screen reader…and so many, many more life lessons that I couldn’t possible narrow down here. It quite literally changed my life…not in a cliché kind of way guys, it seriously CHANGED EVERYTHING! Because of my experience at the center, I decided I wanted to teach other blind people, cane travel in particular. Let me tell you, this idea came as a huge shock to me and others, I NEVER in a bajillion years thought I’d spend most of my life with blind people. After all, I’d avoided being classified as “blind” my entire life. I have grown to absolutely love my crazy, out-of-no-where career!

While I was at the Louisiana Center for the Blind, just 2 short months into my training, I got a call that shook my world to the core (you can read about it here). I went home to spend the last three weeks of my dad’s life with him. He had gone through a short remission but the cancer came back and it came back strong. I am so thankful I got to spend those three weeks with him; they are some of the best moments of my entire life, hands down. I know that my dad is a huge part of my life and I feel him even more strongly going through this whole process. He’s always there cheering me on and it really does keep me going. My dad was/is a freaking rock star!

Long story short (yeah right, I don’t know how to right short), I graduated from the training center, went on to get my Master’s degree from Louisiana Tech University in Educational Psychology and because a cane travel teacher to adults and later too children. Best. Job. Ever.

After graduating with my master’s degree, and my husband graduated with his is counseling, we moved to St.George, Utah where we live now. (You can read all about how we met and our love story here). My husband is a field instructor for a wilderness therapy program and is also a Captain in the United States Army. I do contract work in teaching blind children, am the Family Readiness Leader for my husband’s Army unit and am working on my PhD in K-12 Education Studies through Capella University. We are now working on becoming parents and that’s where this whole blog comes into play.

Here are just a few of my favorite things:

Color: Yellow, Pink & Orange (in that orderJ)

Food: CUPCAKES, chocolate, sugar snap peas and fried pickles.

Drink: Apple Juice

Hobbies: Re-finishing furniture, anything crafty, dancing (pole dancing these days), blogging & party planning.

Place to Travel: Switzerland, Jamaica & New York City

Dream Vacation: Fiji and Australia (I have a goal of visiting all 50 states by age 50, I have visited 36 so far).

Things to Do: Hang out with my husband, spending time with my nephews and niece, traveling and going to cupcake shops.

The people who mean the most to me..