Tuesday, July 30, 2013

Ready or Not

I originally wrote this post on my other blog, Frou FruGal, but since a lot of it has to do with Katie, I thought I'd repost that portion of the post here. If you've already read this post on Frou FruGal, feel free to skip to the update at the bottom.

I really should be upstairs right now, getting the dye on my hair and finishing my packing before I get on a plane today. I'm flying out to Utah to go pick up Katie, my sister-in-law.

Katie - Get Down Syndrome

(I made this shirt for Katie for the Valentine's Dance. Katie LOVES music and loves to dance).
If you are a regular follower, you know that Katie lives with our family for 8 months of year. Katie has Down Syndrome and since both of my in-laws have now passed away, Katie lives with our family for the majority of the year and with her other brother and his family in Provo, Utah for the rest of the year.

I'm not going to lie. It's hard to be a full-time caretaker. I've been on hiatus for four months and I desperately needed the break. I have loved every single second of my freedom. Don't get me wrong. I fully appreciate the fact that as far as taking care of someone with special needs goes, we have it easy. Katie has a calm nature and even though she is somewhat prickly at times, its pretty easy to get her to do what she needs to do.
Having said that, though, she does not have the capacity to think about her own needs. If she's hungry, she doesn't go make her own food or even tell you that she's hungry. Which means you have to constantly think about making sure she's eaten. Living in a house with teenage boys should help you appreciate the fact that Katie is the only person I have to do this for.

Katie - Special Olympics Medal Stand

She doesn't always understand what she is feeling or what she wants or needs and if she thinks she wants something but can't have it right then, she is usually incapable of understanding the reasons why she can't have it. This is often hard for me because I'm one of those people that doesn't just feel my own feelings, I usually feel other people's as well.

This is especially hard on me when Katie wants to be in Utah but it isn't time for her to go back. Usually, I can blow it off and not let it bother me. Trust me, there's no realistic way to be in the caregiving business for the glory or thanks because there isn't any. But sometimes, when you've done things for a person that you find unimaginable (I will spare you the details on this, but trust me, I've done some things you wouldn't dream of having to do) it's hard when that person you are caring for tells you they want to be elsewhere.

Truthfully, usually in those hard moments, those are my thoughts too. I'd much rather have her elsewhere in those moments and have someone else deal with her messes. I'd love to not have to do the hard things. Last year when Katie came, our life got crazy. She came out with my daughter, my niece and nephew. We spent a long week showing them the sites and playing in our state. Then they left and week later we moved to a new house.

Then everybody got sick. Montezuma's revenge to the nth degree kind of sick. Then we moved Katie to a new day program and found her a doctor (a special kind of challenge all on its own). We tried to work on issues on the house, which were many. Our daughter moved back home for a few months before her mission. Band season kicked into gear. If you're a band parent, you know what I'm talking about.

Katie loves going to see Noah in the band. It's one of her joys. If we say anything about band, she says, "I'm going!" She loves it and she loves watching the cheerleaders at the football games. She yells for the teams, even the opposing teams and generally has a great time.

Noah and Katie - Band

Both boys also had different schools and different schedules which meant driving 2.5 hours a days for the first month or so of school and then only 1.5 hours a day after that until February when Noah got his license. Then there was the whole getting the girl ready to serve a mission for our church which meant marathon sewing sessions to get her a modest wardrobe. Not to mention the whole I-Miss-My-Girl syndrome that I went through once she left.

Ryley - Pre-Mission

So, anyway, life was hard last time she came. Things have settled down now, but it's hard not to feel like it's all going to go to heck and back again when she comes back. I associated all the trials of last year with her. Not fair, and I recognize that, but still how I feel.

Lest all these smiling pictures of Katie fool you, she is not often smiling. It's more of a rare event which is why it is so fun when she does smile. I like to describe Katie as the someone with the needs of a toddler, the attitude of a teenager and the preferences of a little old lady - all in one fun package. It's a challenge, but I love her and ready or not, she's coming back. My challenge will be to put aside my fears and just take things as they come.

Update: A few people commented on this post over on my other blog about how down I sounded. I wasn't really down, so much as trying to talk things out and prepare myself for the change.  Mostly, writing is cathartic for me and once I wrote out what I was feeling, those things I was worried about went away. 

I had a great trip out to Utah. I took a swing out with my brother up to Idaho to help our mom clean out Dad's office. My dad passed away last month and Mom needed some help. I really loved spending time with them and helping out Mom and getting her situated for her new normal.

Katie has transitioned well back into her Ohio routine. She seemed surprised that everything of hers was still in the same place, including the door to her room. I'm not certain why she thought that would change, but she seemed happy to see her door, amongst other things. ??

She's had a bit of cold since being back in a wetter environment, but I think she was just starting to get it before we left Utah. On Friday, Dave and I took her to the Knox County Fair to hear Kellie Pickler sing. The stadium there is built into a hillside and it is quite steep. It wasn't until we were up in our seats near the top that I looked over at Katie and saw a rather sick look on her face that I remembered that she has a fear of heights.

Dave and I tried to keep her busy and not thinking about how high up we were, but she was only momentarily distracted.

I'm surprised she is even smiling in this picture. We thought she'd be okay once the music started, but it was so loud she put her hands over her ears. We stayed for one song and then had to coax her down the stadium steps to leave. Later, I asked her if she had a good time and she replied, "No. I'm afraid of heights."

I don't know if you can fully appreciate what a huge thing this is for her to say. Katie usually only gives one word answers and often times those are hard to decipher because of her mumbling. For her to clearly express the concept of fear was a huge deal to me. I know that being in the programs she's attends in both Utah and Ohio have helped her speak her mind a bit more. 

That's not always an awesome thing, especially when she says she doesn't like something that you have no power to change. And, to be perfectly honest, I don't always appreciate her grumbling about stuff. I mean, when I'm the person that has to occasionally wipe her butt and clean up her other messes, who is she to grumble? AmIright?

I realize she is fully entitled to her own opinion on things, though, so I try to ignore those grumblings that I can not change, praise her for expressing her feelings and move on to the next moment that will hopefully be better than the last one.

And we do have some good moments. Like the other day when she a runny nose and + hands covered in blue marker = rockin' an unintentional Adolf Smurf look.

I took a picture of her to show her what she looked like since she wouldn't get up to look at herself in the mirror and I wanted her to go wash up. She's a nut some times.

Sam (our youngest son) and I decided the other day that it would be nice if Katie came with a thought bubble that would appear over her head to help us understand her a bit better. For example, this morning, I was trying to get her out of bed and into the shower before her program. She was dawdling and stretching and just taking her own sweet time. Just before she got out of bed, she got this "lightbulb moment" look on her face and reached around behind her and stuck her hand into her pajama bottoms.

I thought girlfriend had a wedgie and was trying to right matters before getting out of bed. Imagine my surprise as she started pulling these things out of her pants.

I REALLY wanted a thought bubble at that moment to understand the thought process that led to wadding up two cinch-sacks and a pair of socks and sticking them into her pajama bottoms for the night. I am really quite curious about that one. #SomethingIHopeToLearnInTheNextLife

So, we are good. We're readjusting. We're learning and we are just enjoying each good moment as it comes and trying to survive the less-than-good moments. We are looking forward to band season and are planning to send Katie to Disneyland in October. We are also trying to figure out some medical issues and know that we may have more adjustments to make in the future.