The Personal Side of Things

So when I asked what people would like to me to write about, a lot of people wanted to know personal things. There were lot of questions about me. Me! I know this is my blog, but it kind of surprised me that people wanted to know about me and how I deal and do things. I don’t consider myself any kind of amazing that people often tell me I am. I’m just me. God that sounds so…so stupid lol.  I’ll do the best to answer the questions though and try not to be self conscious.

One question that stood out was why do I still work instead of quitting my job and stay at home taking what government assistance I could instead of acruing all of the medical expenses that comes with all of this. Well I guess it boils down to a few reasons. The first is that the doctor that was there that first night (Dr. Wickiser) told us that the most important thing was that we try and keep her life as normal as possible. That if our lives stopped and centered completely around Katie-Anne and gave into everything she asked for that when all of this was done, we’d have a tiny terrorist on our hands. Of course everyday I want to stay home with her and Cooper. I’m their mother. But the truth is, is that I’m also myself. I’m selfish. I wanted to keep my job and try to be/stay successful. I would give my life for her in a heart beat. However, in order to give the best of me…I had to stay me. That meant going to work and doing the very best I could there. One of the things I like most about my job is not selling people pens and pencils, though I do love colored pens lol. What gives me joy in my work is maybe helping the people I work with be better in some way. By no means am I a perfect store manager. In fact I have been told many times over the years my faults, but in the end, I think it matters that I care and I try my best. I see all these people come through my store, and I know in my heart, that they are not going to be retail for life. It takes a special person to be retail. You see, as a store manager in retail, you make good money. You go from store to store, year by year, and you make more and more. You get trapped into staying because you can’t make the same money elsewhere. With a bachelors in geology, I would make half of what I do in that field to start with. I’m not saying you can’t grow, but it’s so hard to find work in your actual field these days. You get trapped in retail. I still have dreams of being a planetary geologist but I need a masters to do anything with that. So here I am going to work everyday not changing lives by selling paper and glue. What I do though is help people learn how to deal with difficult situations. I help people learn to deal with stress or learn how to interview. I like that part of my job, the people developing part. I’m not saving the world, but I am helping in some small way those I touch…even if it’s how they don’t want to be. So thats one reason I work, to stay who I am, because it’s part of my identity. Another reason is because I want her to have the very best health care I can give her. I didn’t want to compromise on her care in anyway and in order to do that, I had to keep my insurance and the means to cover the money part of it. To be honest, I don’t know how it all works with government help, I never looked into it. I just assumed that this was the best way for her, so thats how I did it. The third reason is that when this is all over, I didn’t want to have a gap in my growth in work so that I could give her and Cooper everything I never had. I often get made fun of because I take such pleasure in how they dress. I have been complimented so many times on how the kids are dressed. I love this. I was teased mercilessly growing up about how I dressed, and I don’t want that to ever happen to my kids. I want to give them everything I can. Including a college education without loans. I want to take us on vacations and show them the world, or at least The Grand Canyon..and Pompeii…mostly Pompeii. I come home every night and I hug and play with my children, cook dinner, but I work long stressful hours, and I need time to myself too. I half feel selfish and half feel that I -have- to give myself that time to wind down or else I’ll go crazy. My day starts at 4:40am. I don’t get home most days until 6pm, and some days, like the next two, until 10pm. I work hard, and I do feel guilty, but I need to work.

I feel like I’m rambling …

The reason I can juggle so much is because I can make my own schedule. I am required to work 10 hour days and close at least one night a week. However I write my schedule, my days, so that I can still get things done. I usually take Wednesdays off so that I can take Katie-Anne to clinic. When I can, I close of Thursdays so I can take her to swim class. I usually take Sundays off so I have a full day with both kids, but will usually try and take Cooper somewhere alone during the week for just us time. I close Saturday nights because daddy can take care of the kids and it’s my way of giving back to my team so they can have Saturday nights off to have fun. I have the best team, that is really how I can do a lot of what I do. They give me the flexibility to be late or leave early if I need to. They will switch days off at a moment’s notice, so I feel like they deserve Saturday night at least. Also, Aaron is a great father. He does most whatever I ask of him and that gives me the time to do all I have to do. In return he goes fishing and hunting as well as time whenever I can on the weekends. Its a give and take. I try to keep life as normal as I can for all of us. The one that suffers the most is Cooper I think. He is often shuffled between family and friends weekends that we are admitted. He is loved by everyone, thats not it, but he is often second to the needs of Katie-Anne’s treatments and I hate that, but its the reality. I really try to take him places just us so that I can show him attention by himself, but it’s so hard. He is well adjusted and doesn’t have behavior issues because of who he is. It’s like he was suppose to be Pooter’s brother because the world knew how hard her life was going to be and she is going to need a strong and loving brother to help her the rest of her life. He is her best friend (Cousin Gavin too) and it shows how much they love each other. There is also normal jealously, but more on Katie-Anne’s side of things. I think they think this is just how life is. They don’t know any different. It’s sad I think.

People ask me a lot about money. People fund raise for us. People give us money. I’m both grateful and touched and sad. If it wasn’t for the generosity of people, we wouldn’t be as okay as we are. We owe about ten thousand to the hospital. From the very first we made a decision that all of the bills would be in my name. Aaron’s credit score is pristine, and mine is not. I’m hoping to go through credit repair when this is all done, but I think it was the best thing we could do so that both of our credit scores weren’t put in the tank.  I think we’ve done well considering everything that having cancer entails. Medications, co-pays, treatments, and travel, along with everything else, takes its toll on a family. We are luckier than most in this respect. So many people help us. So many. I cannot tell everyone how very much it means to us. Everything from gifts to card, prayers and donations. All of it humbles me. I don’t know what I ever did to deserve such pure love.

I have often asked about my faith. I don’t talk about it much because I consider it a very personal thing. I’m going to try and share this with you. This is hard because I know my beliefs aren’t quite the same as others. I believe in God, I do. From the moment Katie-Anne was born, I said The Lords Prayer over Katie-Anne as I put her to bed. Every. Single. Night. If I wasn’t with her, Aaron did. I did when Cooper was born too. This is where it gets hard for me to explain. God was never a prominent part of my life. I went to Sunday school when I was younger and lived with my grandparents. I grew up Methodist. As I grew older and started learning about the earth and the cosmos I always questioned the beliefs I was given. From a very early age I remembering wondering why people couldn’t believe in God and evolution together. I thought that it was pretty arrogant of us to believe that a day to God was the same as a day to us. I thought that a day to God could have been a billion years to us. I’m talking about as early as about ten or so. That believe is one I still hold. I believe God is the reason behind the Big Bang and that he created us through evolution. I love the study of our past. I believe we are start dust. We come from the stars, that comes from God. I’m aware that many don’t feel the same I do and because of it, I don’t share this part of my life often. The night before Katie-Anne was diagnosed was the last night I ever said the Lords Prayer over my children. I think that was the anger. My rebellion. I still pray to God for healing, to let us keep my precious girl and I appreciate ever prayer said for her. I pray Cooper grows up kind and strong. But I don’t know that my prayers are the same.

Ugh, I feel fear of being judged just typing it, but from the very beginning, I said I be honest, so there it is.

When you have a child with cancer and they are growing through treatment, it is usually obvious. Bald head is usually the big sign. When I am out with Katie-Anne we get a lot of people that look at us. Most people go out of their way to smile or tell me how beautiful she is. How they love her big bow or her clothes. Usually shyly, uncertainly for sure. As she has gotten older I’ve had more kids see her and ask why doesn’t she have hair. It’s honestly funny watching the parents turn red and get embarrassed, but it’s okay I swear!  Katie-Anne doesn’t get upset and will usually touch her head and say, ‘I don’t have hair.” As if affirming that they are correct. It’s so very cute. I usually address the children directly, kindly, and explain that Katie-Anne is very sick and has cancer. The medicine that is trying to make her better also makes her hair fall out. Depending on the age of the child is how in depth my answer is. Sometimes Pooters will say she has buggies and my heart swells to overflowing for my brave girl. Sometimes adults will start a conversation with how beautiful she is and then very rarely ask me what she has and how she is doing. I tell them she has Stage IV Neuroblastoma High Risk and that we are fighting as hard as she can. Sometimes I will be asked her prognosis and though I know some people might consider it rude, I don’t. I don’t think curiosity is rude. I rather people ask so that I can take a moment to educate them about childhood cancer. The sad smiles she got when we were out used to bother me. On the inside I would be angry because I didn’t want their pity. That has passed though because what she goes through is hard and she deserves to have people acknowledge it. I don’t think pity it a bad thing most times, at least not in this case. If it comes from a good heart then I think it shows that a person cares about her life and sees how hard her struggle is, because this does suck.

As for me and who I am… I love geology, specifically volcanic activity on other planets. I love to learn and read. I would be a professional college student if I won the lottery tomorrow. I’d also get paper plates for the hospital but thats just me being silly. I honestly don’t have a favorite color but Katie-Anne thinks its yellow…so its yellow for her. I love the rainbow, I think thats where she gets it from. People see me as an outgoing person, but I’m content to be in my own company. I can be moody and when I am stressed, I’m a very hard person to love. I think about “one day” all the time. I am a people pleaser. I think I’m a person people can count on when they need help. I try and go out of my way to help anyone I can. I don’t do a lot of grey. I’m pretty black and white. I either love something or hate it, there isn’t a lot of in-between for me. If I had three wishes they would be… 1. The ability to heal any sickness. 2. To be able to read and control minds. 3. To understand, read, write, and speak every dialect (including slang) of every language on the earth.

That’s it. That’s all I have tonight. I need to get to bed. I have two 6am-10pm shifts in a row coming up and I need a good nights sleep. I hope that this is kind what you all had in mind. I tried to answer the questions that I saw. I’m trying to be honest so please don’t hate me lol. So this is who I am, the personal side of things. I don’t know how I’ll be in the future, but this is me when cancer happens.

 

 

 

 

 

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s