I'm going crazy! No sleep. A hundred medicines. Dozens of tests to keep on top of. And the adoption all going haywire at social security! I know nobody is reading this, so I can rant and don't have to make too much sense.
Cathy, a woman in my ward, had her son go through a very similar chemo treatment when that son was 4. She told me at the beginning of this that it can get very lonely. Frankly I kind of thought that was a "weak" thing to say. "Weak" isn't really the right word, but I can't find the right one. I've never been a real social person. Going to parties makes me nervous sometimes and I really don't usually like that. I think I've also been a little disdainful of friends who actually get depressed if they haven't had their "social quota" of interactions for the day. I max out pretty quickly in social interactions. But I didn't realize that this lonely isn't about human interaction really. I am lonely. Very lonely. I feel so isolated. Nobody really knows what we're going through. The only time I don't feel so alone is when she's getting her chemo and we can talk to other parents of kids going through the same stuff. www.kidneysandeyes.com had a post about this yesterday or the day before. She put it so well. Even though others care for our baby and see what we're going through. They don't *know.* And though those close to us want to help I can't figure out how to say, "I really don't even want your help if it's going to come with criticism." With DH gone for the week, I need the help. I simply can't give her all of these oral meds by myself. So I just have to endure the criticism on top of all the other battles I'm fighting.
Yeah, I caught what could have been a life-threatening mistake yesterday as I "advocated" and followed up on all of her tests and meds.
I'm exhausted. More emotionally than physically.
2 comments:
Best wishes from a "heart mom" and fellow reader of MMW. I'm here to agree that the isolation can really get to you, the extended family can really get to you, and the ward members can really get to you. :) Oh, and the stress of your baby's condition. And the medical treatments, and being in the hospital (the actual physical feeling of the place). And lots of other things!
Hope things go well! It sounds like you're doing a great job.
I'm sorry I haven't been back to see how you were. It's true, it is very isolating. Unless someone has been through it with their own child, they really don't get it. I am not a very social person myself and I missed the interaction. It helped that I was able to find stuff for myself. I still went to the YMCA when my husband got home. It's true, you do have to take care of yourself. If you get sick from not sleeping or not eating properly and she becomes inpatient, often they won't let you on the floor because you could endanger the other kids. Plus, you need to be able to take care of yourself.
I know about the criticism too and I am so, so sorry. My worst came from my own parents (who had dealt with my cancer and chemo when I was little) and my RS president. I wrote about it at the very beginning of my blog. Take advantage of their help, use them despite their attitudes. Do whatever you can to help your baby, that's all that really matters. Feel free to email me if you have any questions. ldscancermom@yahoo.com
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