When I graduated graduate school in 2004, my thoughts were on finding a job or getting into a PhD program and figuring out what was next in my life. Little did I know, I was only a few days away from meeting my future husband and having my world and idea of home rocked.
Since then, life has definitely been an adventure. From our first dates, we wandered near and far in search of adventure, and often adventure found us when we weren’t even looking for it.
My journey to becoming an Army wife is probably very similar to many others. My now husband and I dated for a little over a year before he was deployed to Iraq. He was unsure it was a good idea to stay together while he was deployed, and honestly, we did almost break up about three weeks into the deployment. Despite the rocky start, we made it through. And before he even came home a year later, he was slated for his next big adventure: Alaska.
Being Southern, born and breed, the thought of Alaska with its year round snow and penguins (this was what I actually thought about Alaska before we got there), was terrifying. When it snows (or there is even the threat of snow) in the South (or even slightly farther north… ahem, I’m talking to you, Maryland), everything shuts down. Despite my misconceptions and fears, I decided to make the journey and keep our adventure going.
We married about two months after he got home from Iraq. We decided to drive from his duty station at Fort Campbell to Fort Wainwright. It was the beginning of winter. Talk about an adventure. We made some stops along the way and visited some national treasures, like Wall Drug and Mt. Rushmore. As we got further north, it got colder and colder. It was the right decision, even if it was extremely nerve wracking at times. If I’d gotten off a plane in Fairbanks having gone from 50 degrees to -50 degrees, I would have gotten on the next plane back to Tennessee.
Our first big adventure as a married couple under our belt, we had many more during our time in Fairbanks. Alaska is a tough assignment. In a lot of ways it is like living in a foreign country.
My husband deployed again, and I made the trek to the lower forty eight by myself. It was a bad deployment. My husband’s unit lost several people and numerous people were seriously injured. Then, my husband was injured. Thankfully, my husband had a full recovery. We were lucky.
From Alaska, we moved back to the lower forty eight to Fort Bragg, NC. It was a bit of a culture shock. We went from little Army back into the much bigger Army. Fayetteville traffic is itself an adventure most afternoons.
With a bigger base, come more opportunities to give back to the community. I spent most of my time at Fort Bragg volunteering for the American Red Cross. Fort Bragg has one of the largest ARC volunteer programs. I met some wonderful people who gave their time generously and selflessly anywhere and in any way. I had the pleasure of being becoming part of the leadership team and eventually was the Station Chair, which is the volunteer equivalent of the paid head of that ARC station.
Our next adventure came in finding out that we were expecting our son. People all along had been asking when we were going to have a child. Frankly, in the beginning, the plan was not to have a child. We were not young kids when we married, and we were both pretty set in our own ways. But when the time came, we were very happy to begin this new chapter.
Our little man was due in early November. We were also slated to PCS to Aberdeen Proving Ground in Maryland the first week of December. Our little procrastinator decided to wait until Thanksgiving weekend to start thinking about arriving. My husband was starting to think he wouldn’t be around to see him born because of our PCS schedule.
Our little family made our way a week later to our new home in Maryland. We had taken a weekend to house hunt several months earlier, and we hadn’t seen the house since we made our offer. So many “adventures” in such a short period of time was stressful. We got settled into our new home around Christmas.
My little man and I settled into our routines in our new home. Everything went along smoothly for almost a year, then one day he didn’t respond to me in the way he normally did. He seemed to be in a daze. It didn’t last long, but it was odd. He did this several times over the next couple of weeks. It was normally when he seemed to be tired.
My husband went TDY (temporary duty assignment) for a few weeks in August, so my little man and I went to visit my family. We were getting ready for theday, little man was crawling around, and then all of a sudden he wasn’t. It seemed like he’d forgotten how to crawl. He started crying, but then he was just limp and unresponsive. I immediately picked him up and tried to get him responsive. He snapped out of it after about 30 seconds.
I mentioned these episodes to his PCM (primary care manager) on our next well baby visit. She did not seem too worried about them, but she did note them in her notes.
A month later, I was home alone again, my husband was on another TDY, and it was around nap time. Little man was crawling around, and all of a sudden just flopped forward. He picked himself up, but just flopped back over again. I picked him up, thinking he was really ready for his nap. He got a thousand yard stare and stopped responding to my voice. He looked like he wasn’t breathing, and my first instinct was that he was choking. Then, he started convulsing. His little body jerked violently and he wasn’t breathing, and I have never felt more helpless in my entire life. I was not calm. I did not realize what I was witnessing; I just wanted my baby to be ok.
I quickly called 911, but knew I wasn’t calm enough to talk to them. So holding my limp, unresponsive child, I started frantically knocking on neighbors’ doors. Despite having been in the neighborhood for about 10 months, we didn’t know anyone. Thankfully, one of my neighbors works from home and talked to the 911 operator.
We went to the ER, and after telling numerous people the events over and over, they thought it was a choking incident too. We were home a few hours later. My mom and sister come the next day to stay until my husband came home. I’m so thankful they did, because almost to the minute 24 hours later, my son had another incident. This time, we were in public; my mother who is a nurse was able to keep her calm. She knew immediately he was having a seizure. This one lasted longer than the first one, and to me (frantic mother), he seemed to not breathe for longer. We were luckily only about three minutes from the hospital. Within a few hours, we were being transferred to University of Maryland Medical Center in Baltimore.
After a long night/day in the ER, tests upon tests, telling and retelling what happened, we still had no answers. He had not had another seizure while we were in the ER, and the EEG and MRIs all came back normal. There is nothing more frustrating than knowing something is wrong with your child and no one being able to tell you exactly what it is or why it is happening.
My husband was able to come home a day early to be with us in the hospital (thank you, Red Cross message). About 24 hours after we’d come into the UMMC ER, we were taken up to the floor for observation. Within 15 minutes of coming upstairs, my son had another seizure. Luckily, this time a doctor was present. He stopped breathing again, so then lots of doctors were present. We were moved to the NICU. At least now with visual confirmation, we had part of an answer. Up to this point, no doctor wanted to say that he was having seizures, because of how the events were being explained.
We were in the hospital for a few days, including my birthday. My son gave me the best present I could think of by not having a seizure that day. He was put on anti-seizure medication when we were moved to the NICU. He remained seizure free for about three weeks.
When we left the hospital, I was terrified to be alone with him. I didn’t know how to deal with him having another seizure. Every day, I felt like I was holding my breath waiting for him to have another seizure. After two weeks, I started to relax a bit. Of course it’s when you start to relax that things start to go wrong again.
Three weeks later, he had a cluster of seizures. He had multiple seizures for 3 days in a row. This was horrible, because he had only ever had one seizure a day the first go round. We ended up back at the emergency room and having some more tests done, but he was released with instructions from his neurologist to up his medication dosage. He continued to have cluster seizures, so we ended up going to UMMC again. We were admitted and he was put on the EEG monitor again. This time they were able to catch a seizure.
We were told he has frontal lobe seizures and that they seem to start on the left side of his brain and move across the entire frontal lobe. They were somewhat surprised by this, because this is usually seizure activity that happens during sleep, and his seizures have always been when he is awake during the day.
We were given a second medicine to help control the seizures, and this medicine has proven effective so far (he is 7 months seizure free) and sent home again. If I was scared the first time we went home from the hospital, this time I was frantic. I did not feel equipped to handle seeing my poor baby go through this again. Logically, I know what I need to do while he is having a seizure, but emotionally, I want there to be something else I can do for him.
I know that in the grand scheme of things it could be a lot worse. He has a very mild form of epilepsy, and it really hasn’t affected his development. I do not really consider him a special needs child, but with the epilepsy label comes the other label. For all intense and purposes, he is a healthy, happy toddler who loves exploring, playing in water, eating watermelon and reading Peppa Pig books.
Hurry Up and Wait 