Midnight Sun

I ask not for a lighter burden, but for broader shoulders. Jewish proverb

I recently watched a movie called Midnight Sun, staring Bella Thorn and Patrick Schwarzenegger. It's about a girl named Katie who is 17. She has a rare disorder that keeps her from being in the sun. If she does, it can kill her. She sits in her window and watches the world go on as if she isn't even a part of it. As I was watching this movie I felt very connected to the story line. I sit in my living room and watch my neighbors out doing their lawn, walking their dogs, going to and from running errands. I watch the sun break through the clouds and shine through the few leaves that are left on the trees. I see the kids leave for school, adults leave for work and there I am watching the world go on without me.
I constantly watch trash TV, all those reality shows that make Matt's ears hurt when its on. I even spent almost $50 on Below Deck Seasons (sorry my Love). In some weird way watching "real" people live their lives almost makes me feel like i'm a part of the outside. I'm constantly on Facebook just finding stuff to read, looking at everyone else's posts and pictures. I love to see what people are doing, seeing all the new adventures, and just feeling like i'm a part of the world again.
The other night I ordered dinner for my little one. He wanted a cheeseburger and fries so we went on to Door Dash and placed his order. When his meal got here I quickly warmed mine up so we could eat together. Kodi had ordered Cajun fries, they smelt so amazing and the look on his face when he took a bite just had me drooling. I reluctantly ate one fry, I know I shouldn't but it's just not fair. I feel like i'm deprived of even the most basic things. I made the mistake a couple weeks ago by taking a few bites of Kodi's Kraft Macaroni and cheese. For the next couple of weeks, I suffered. Even a couple bites of something can take me out for weeks. Thankfully Matt found me a low-fat mac and cheese that is absolutely delicious. Even when this all done, I'll still make this. (recipe on Recipes Page, as well as Blog).
One of the hardest things that I go through is the feeling of dying. I know how awful that sounds, but I constantly have this feeling that I’m not going to make it through to the end. I have almost lost my life several times to this disease. I laid in a hospital bed wondering if my husband was going to make it back to me before I died. Sometimes I fear I’m going to go to bed and not wake up. A couple months ago I decided to write Matt and the Boys each a letter just in case I don't make it. I've written down my final wishes and told Matt where it is just so he'd know. I love my life, even during this hard time I still find things to smile and laugh about. Some days it's hard, and others it just comes naturally. That was one thing that I loved so much about this movie, she never complained, or cried about her condition, she made the best of it. She made a life for herself inside the four walls of her home.
Something that I struggle with is feeling like a burden to other people. Including with my own family. I hate asking for help, I hate I depend on them for so much. I'm the momma, I’m supposed to take care of my family. I get the urge to reach out to my friends and ask them to come over, but I understand they work, have kids, and are busy. I never want them to feel obligated to come over. And I feel like if I ask, they feel that obligation and guilt. I talk to my mom a couple times a week and that helps. The kids are here every four days and I can't tell you how much I look forward to that.
Thank you so much for reading today. If anyone has any questions, anything at all please send me a message. I'd gladly answer them.
Love Sandra Kellas

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