First post
All I want to do right now is fall into a ball and cry. Then I want to physically harm something, pref a bad person who deserves it, but definitely cause physical harm. So, to avoid jail time for assault, I'm going to try to write stuff down in this blog.
I have no idea how I'll manage this blog. It's possible this will be my first and last post. The last blog I maintained was when we lived overseas. It definitely had a different tone than I expect this one to have.
The problem with wanting to fall into a ball and cry, as previously mentioned, is that you're never able to do that when the mood strikes. I want to do it when I'm overwhelmed with a lot of things all at once. It's not when my child is getting her port accessed, or she's begging us to not give her life saving medication, or she is grouchy to us when she feels bad. Those times are strange because you don't want to curl up then. Those times are where you find your Mom super powers. The super powers overcome you, you get really calm, and you go into The Zone. I want to lose it when I can't control the things I can normally control. Work, house work, meals- all the things that are manageable to me under normal circumstances. Now all those things make me insane when I can't accomplish them in my usual way of doing things.
My 5 year old daughter has cancer. She has a form of cancer called rhabdomyosarcoma. I had never heard of it before. All I knew, thanks to Medical Nutrition Therapy class in college, was that sarcoma = cancer. When the physician called me to give me the results of her biopsy all I heard was the sarcoma bit. I stopped her and said "wait wait wait. You're calling me to tell me C has cancer?!" I could hear her voice change to a lower octave when she simply said "Yes."
Everything else is a blur. All I wanted was to get off the phone, call my husband, and get the hell home with my kids. Then we'd all climb into our bed, shut the door to our room, and it wouldn't be real. We'd be safe in our house and nothing could harm any of us.
She's sick today. She feels terrible. Not nausea, just overall feeling crappy because of the poison that's pumped into her body on a weekly basis. Speaking of poison, aka chemo, I had visions of people coming in hazmat suits holding a neon green bag when it was time for her to get it. Just FYI, in case you're curious, it's (obv) in an IV bag or a large syringe. They're both hooked up to her mediport (aka port). It's a simple process for something that serious and scary.
So, right now I'm in my bed with C who is asleep. I've worked from home today, so I'm in bed with her with my work laptop. I'm sending emails, working on documents, and overall getting things done. I'm also looking at her constantly, waking her up to take her temperature, and pushing water on her like there's no tomorrow. I'm so grateful to be able to work from home. I"m so grateful, and yet this is exhausting.
When it comes to work-How do you give up control? How do you come to a resolution that you won't be able to give it your all at work? I'd like to think I'm not a control freak. I don't think I'm too much of a perfectionist. I just don't like to let people down. I hate being the "weak" member of the team. I extra hate causing someone else more work because I can't help. I'm trying to find the peace of mind to know that, when it comes to work, nobody is going to burst into flames because i'm not physically there all the time. Nobody is going to be disappointed in me because I didn't do something perfectly. I know these things, but I still can't let it go.
When it comes to your sick child- giving up control is difficult to hone in on. On one hand, you've given up control of their body because they're at the mercy of their cancer. They're being pumped with poison, which obv you wouldn't normally do. You have to hold them down time and time again when someone in a mask sticks a needle into their skin to access their central line. You allow strangers control of her life when you allow them to take her and place her under anesthesia. All those things are somewhat easy to give up- I dont know how to place a central line or calculate the amount of chemo to give her (it's grams/meters squared if you're interested). I'm okay with those things being out of my control. Oddly enough- it's the majorly important things that I can relinquish control of, but the small junk is where I'm going to lose it over.
We take it day by day. Live in the good that we know. Don't think about the bad that can happen. We pray a lot. Ask others to pray for us. And just keep at it.
I have no idea how I'll manage this blog. It's possible this will be my first and last post. The last blog I maintained was when we lived overseas. It definitely had a different tone than I expect this one to have.
The problem with wanting to fall into a ball and cry, as previously mentioned, is that you're never able to do that when the mood strikes. I want to do it when I'm overwhelmed with a lot of things all at once. It's not when my child is getting her port accessed, or she's begging us to not give her life saving medication, or she is grouchy to us when she feels bad. Those times are strange because you don't want to curl up then. Those times are where you find your Mom super powers. The super powers overcome you, you get really calm, and you go into The Zone. I want to lose it when I can't control the things I can normally control. Work, house work, meals- all the things that are manageable to me under normal circumstances. Now all those things make me insane when I can't accomplish them in my usual way of doing things.
My 5 year old daughter has cancer. She has a form of cancer called rhabdomyosarcoma. I had never heard of it before. All I knew, thanks to Medical Nutrition Therapy class in college, was that sarcoma = cancer. When the physician called me to give me the results of her biopsy all I heard was the sarcoma bit. I stopped her and said "wait wait wait. You're calling me to tell me C has cancer?!" I could hear her voice change to a lower octave when she simply said "Yes."
Everything else is a blur. All I wanted was to get off the phone, call my husband, and get the hell home with my kids. Then we'd all climb into our bed, shut the door to our room, and it wouldn't be real. We'd be safe in our house and nothing could harm any of us.
She's sick today. She feels terrible. Not nausea, just overall feeling crappy because of the poison that's pumped into her body on a weekly basis. Speaking of poison, aka chemo, I had visions of people coming in hazmat suits holding a neon green bag when it was time for her to get it. Just FYI, in case you're curious, it's (obv) in an IV bag or a large syringe. They're both hooked up to her mediport (aka port). It's a simple process for something that serious and scary.
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| One of the chemo drugs is in that large syrenge. |
So, right now I'm in my bed with C who is asleep. I've worked from home today, so I'm in bed with her with my work laptop. I'm sending emails, working on documents, and overall getting things done. I'm also looking at her constantly, waking her up to take her temperature, and pushing water on her like there's no tomorrow. I'm so grateful to be able to work from home. I"m so grateful, and yet this is exhausting.
When it comes to work-How do you give up control? How do you come to a resolution that you won't be able to give it your all at work? I'd like to think I'm not a control freak. I don't think I'm too much of a perfectionist. I just don't like to let people down. I hate being the "weak" member of the team. I extra hate causing someone else more work because I can't help. I'm trying to find the peace of mind to know that, when it comes to work, nobody is going to burst into flames because i'm not physically there all the time. Nobody is going to be disappointed in me because I didn't do something perfectly. I know these things, but I still can't let it go.
When it comes to your sick child- giving up control is difficult to hone in on. On one hand, you've given up control of their body because they're at the mercy of their cancer. They're being pumped with poison, which obv you wouldn't normally do. You have to hold them down time and time again when someone in a mask sticks a needle into their skin to access their central line. You allow strangers control of her life when you allow them to take her and place her under anesthesia. All those things are somewhat easy to give up- I dont know how to place a central line or calculate the amount of chemo to give her (it's grams/meters squared if you're interested). I'm okay with those things being out of my control. Oddly enough- it's the majorly important things that I can relinquish control of, but the small junk is where I'm going to lose it over.
We take it day by day. Live in the good that we know. Don't think about the bad that can happen. We pray a lot. Ask others to pray for us. And just keep at it.
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