From the Midwest to the Southwest: Growing My Support System and Embracing Change

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Sabino Canyon, Tucson, AZ

On a rainy day in September, I stood in the garage of my old house is Kansas City and began to cry. There in the driveway, sat a giant U-Haul truck, the truck that would carry whatever worldly possessions we could manage to fit in the back to our new home and our new life in Arizona. The decision to move hadn’t come easily; it is something my husband and have I spoken about occasionally since our daughter was born seven years ago. And it was clear in that moment that actually going through with it wasn’t going to be easy either.

It has been four years since I was diagnosed with narcolepsy. Since then, so much has happened. I’ve tried various medications and lifestyle modifications to mitigate symptoms. I switched from working full time in the office to working part time from home. I ran miles and miles to stay awake. At one point, the changes seemed to be helping. As long as I stuck to very strict routines, I was meeting all of my obligations and feeling fairly well. Because it seemed I knew how to manage my condition, my husband and I made the decision to have a second baby.

The first twelve months s of Jack’s life were rough. I often felt overwhelmed from the weight of having a colicky baby. Even after the extreme fussiness was gone, he refused to sleep decently for the first ten months of his life. Taking care of a high needs baby and an energetic, curious older child was harder than I ever imagined. As the months went by and I racked up a ridiculous amount of sleep deprivation, my symptoms returned with a vengeance. From sleepiness to debilitating brain fog, I was in a narcolepsy-induced haze, unable to focus on any of my responsibilities – being a mom, being a wife, being an employee, etc, etc. I felt like I was spread so very thin without anything left to take care of myself. While my son is older and easier to take care of, he is quite the mischievous little guy at times and is hard to keep up with when I’m so very exhausted. This makes it hard to focus on establishing those strict routines that helped manage my symptoms before. Still, he’s adorable, and I’d do it all over again 1,000 times over.

"Uh-oh..."

“Uh-oh…”

There was also the fact that we had very little family in Kansas City. My children were growing up without knowing the joy of going to Grandma’s and Grandpa’s house on the weekends. They were missing out on big holiday gatherings with aunts, uncles, cousins, grandparents, and everyone in between. Date nights with my husband were such a rarity that we started planning days off together because it was the only way we could get a break from the kids to spend time with each other. And then Christmas of 2014 came around and I was just plain fed up at the loneliness of just having the four of us around the tree. So, in the spring when my husband felt the timing was right, we started the process of relocating.

Much to our surprise, the process went off with only a couple of glitches. In early July, we visited Arizona to spend Jack’s first birthday with family and to look at houses. His family was still so very cautious about getting excited, even when we said we were pretty certain we picked out the neighborhood where we wanted to buy our new home. It was so fun looking at houses, but no matter how many resales we looked at in person and online, we kept coming back to the idea of buying new so that we could move in and not lift a freaking finger for a lonnnng time. Ha!

With the help of my father-in-law, my sister, and two of our friends, the U-Haul was packed. My son and I boarded a plane on September 19th, while my husband, father-in-law, and daughter made sure the contents of the house and our cars made the long drive. On September 25th, we closed on the purchase of our new home and the sale of our old home and officially began our lives in the southwest.

Our New Home

Our New Home

The hardest part of moving has been managing the emotional aspects. While I didn’t have much family in Kansas City, I did leave behind my sister, my niece, and my best friend. I miss them a lot, even though I chat with my sister and best friend almost daily. But there’s something else that has been on my mind. They’ve seen me during my harder times. My husband’s family has not witnessed a really bad flare, nor have they witnessed a bad cataplexy attack as of yet. So there’s this fear about how they are going to handle seeing that part of my illness. It’s easy to present yourself as a totally healthy and functioning person for a week or two out of an entire year, but I feel like it’s going to be impossible to continue to do that indefinitely. At some point, I’m going to have to learn to admit when I’m having an especially rough time and need extra support. I’m going to have to let go of being afraid of being vulnerable and learn to ask for help because managing two kids, my job, and my illness day in and day out is super hard. After all, having more support is one of the main reasons we moved. Part of living as well as one can with a chronic illness is finding a strong support system, even if you have to move 1100 miles.

The view right by my neighborhood

The view right by my neighborhood

Living in Arizona in quite a change from living in Kansas City. I’m in a less populated area, so going shopping is not as convenient. In fact, I am thirty minutes away from the nearest Target and have to do most of my shopping at Walmart. I know, I know. It’s a travesty. And there are fewer places to take the kids for entertainment. No Chuck E. Cheese’s or PowerPlay. There are places,  but again, they are at least thirty minutes away, so we only go do stuff like that on weekends since I like to keep my driving limited to about fifteen minutes. But the mountains, people. The mountains are all around me. We’ve gone hiking a couple of times already, and I feel so fortunate to live in such a beautiful setting. Someday soon, I hope to start jogging in that beautiful scenery.

As of now, we’re absolutely enjoying being around the family. My husband and I even got to go away for a weekend for the first time since April of 2013. I’m still feeling quite a bit of stress trying to take care of everything, but hopefully as we all adjust to new routines and learn how we can all help each other, that will improve. I’ll start feeling less overwhelmed and like I have a grip on my own life. I’ll start to feel like I can really build up something new.

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