I started working at an upscale preschool and childcare center in Farmington Hills. I was amazed at the driving differences in the greater Detroit Area. I couldn’t understand how driving 12 miles took over an hour every time!

Everything was new. The culture had changed so drastically that I wasn’t even sure if I was in Michigan still. Suddenly people didn’t talk about where they lived by what city they were in… no, people talked in code like 9 mile and Middlebelt or 14 mile and John R. How was I supposed to know where that is?!

I had joint custody of Elliott when I moved. I had him 50% of the time but that was with a few weekly exchanges. I decided to ask the court to change custody to alternating full weeks so I could keep the amount of time I had him but reduce the number of hours he had to spend in the car. The result of that hearing was horribly opposite what I was expecting. The referee decided to change custody in favor of my ex, but further in his favor than he was even asking! She told me that I would sacrifice my parenting time for moving away (even though it was within the 100 miles) and didn’t care to hear about how it was a better move for me, how I’d come so close to being homeless in Jackson. She told me I could have Elliott only every weekend, if I “want him that much”! I still had joint legal and physical custody, but suddenly I didn’t have him as much and he wouldn’t be going to school while in my care. It was a devastating blow.

I was pretty poor. I had left my marriage with virtually nothing except bills stacked to the ceiling. With the adjustment periods, I made a few changes to my living arrangements. I first lived in a 2-bedroom trailer that was itty-bitty and if the children came over, 2 of them would sleep in the living room and 2 would sleep in the other bedroom. Then I moved in with Steve and his mom to save some money for a little while.

I remember the first time I witnessed one of Steve’s seizures. It was in the basement and he fell to the concrete floor and during the convulsions he managed to wedge himself between the furnace and the wall. Fearing he would injure himself worse being in that predicament, I pulled his legs to try to get him out of there. I only managed to get him a couple feet closer to me. I had seen people have seizures before, so I knew what to do (or more importantly what not to do), but it became incredibly more scary when it was someone you loved that much.

I just want to take this moment aside to let you know that you are NOT supposed to put something in the mouth of a seizing person. It is much too easy for that person to bite and break whatever you’ve put in their mouth and they can choke on that. Also, please don’t hold them down. You won’t be able to stop them, but you may hurt yourself. Just make sure that anything you can move out of the way has been moved. Also – sometimes – a seizing person can come out of a seizure a little quicker if you talk to them in a soothing tone. I’ve heard a couple people say the tone of someone’s voice can give them a focus point they become aware of during the seizure and can lead to its ending.

After a seizure was almost worse than the actual seizure. The confusion, the lethargy, the pain, that was the part that was hard for me to handle when it came to the seizures themselves. He became impossible to talk to because he had no idea what he was saying, and yet he would get angry if you didn’t talk to him. Then he would fall asleep in the middle of the most inconvenient activity. The person I loved more than anyone else in the world, my soulmate, changed into someone different every time.

I was told his seizures had been worse at one point. At least this medication was slowing them down a little. He’d tried every other one there is. And yet even this one came with a ton of side effects. He would have to take sleeping pills to get to sleep, Adderall to get him back awake, Xanax to stop the anxiety from the side effects, then opiates for the pain, and soma for the muscle relaxer….  the list went on. It was very bad seeing him on this prescribed and legal cocktail of mind-altering and very harmful drugs.

He would fall asleep while standing up, in the middle of looking for something, or even halfway through chewing his food. His eyes were always glazed, and he was pretty much a zombie. Katelyn even asked him to stop coming to her school events because she was embarrassed. He couldn’t watch the kids at all when he was like this and parenting time slipped by often while he was out of it.

I was torn apart by two vary different emotions. It nearly destroyed me, and it nearly destroyed our relationship. When Steve was Steve I couldn’t imagine being happier. I had everything I could ever want even if I had no dollar to my name. I was so much in love that I could never leave this man – the one who was made for me!

But when Steve was affected particularly bad with either his seizures or his medications, I lost the love of my life every time. He was gone. I had to grieve over his loss roughly every week. It was so taxing on my body and my emotions. Sometimes I thought it was hopeless and I didn’t see an end to this perpetual grief and I didn’t think I’d be able to deal with it all my life. I questioned my love and my commitment much more often than I am comfortable admitting.

I was in a new place, scared and alone, and questioning the one thing that gave me the most happiness in all my life. It was not a good time for me.