In hiding

No posts for awhile. I've been in hiding. I've almost been able to pretend that things were okay. We've had some really nice times over the holidays and with a few weeks of no active treatment under our belts. Scan day has roused me from my hiding. I actually started this post a few days ago, but couldn't quite seem to really get to it. Nathan is having his MIBG this morning. I fully expect his disease to have progressed. And I don't expect future treatment to stop its growth completely, but I'm hopefully that our next stab in the dark will at least slow it. Oddly enough, there seems some pressure off the scan itself now. I view it as a tool that will hopefully guide our decision making process some, but I'm not holding my breath all day like usual hoping for good news. Funny thing about low expectations. They make some things easier.

We have had some good times. We had nice holidays. Nathan has been in school. The kids have played hard. Susan and I went out together without kids like a normal couple may do from time to time. I'm working again. We've found a renewed routine and involvement with our church. I can't help but struggle though. I'm less actively focused on the bad things, but they sure do bubble under the surface. I've posted about this before, so I won't belabor it now, but it comes out in all the wrong ways. My fear and my anger burst forth from time to time, and it is mostly directed at disproportionate reactions to normal kid behavior. Poor Julia. She has it so rough in so many ways. She and I seem to have a similar problem. Her angst bubbles up in behavior that mostly involves being whiny or throwing fits. My angst bubbles up in my reaction to her. Its a terrible vicious circle. I try so hard to make it clear how much I love and enjoy her between our fights...but is it enough?

I have something I have to shake. We have basically decided to take it light with treatment for Nathan. We have shifted from hope for long-term survival to hopefully prolonging a period of good quality of life before Nathan's part in this struggle is complete. This is the right decision. We could fight tooth and nail for every extra day, and in doing so we could load those days with pain, illness, time away from home, time in the hospital, and etc. That wouldn't be right for Nathan or the rest of us. I can't help but feel a bit, down deep, like I'm not doing my job. I *should* have hope. I *should* fight until the end for my son. But, I really shouldn't. Some parents in this world have some disdain for slowing the fight for quality of life. I get that. I feel that down deep. And that disdain and their approach is right for them and their families. It isn't for ours. Neither approach is more noble or indicative of more strength. They are just different approaches to an impossible situation. I wish I could make my gut understand what my head does.

I've got to stop yelling at my kids. I've got to find an outlet for my anger and whatever other mess of emotions I've got brewing. I want to make some good memories while I've got all three of my kids here with me.

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