Back in June I posted about Julia's concerns for Nathan. When she and I were driving home after dropping the rest of the family at the airport to head to NY to get the scans that would ultimately show his current "relapse", she dropped the "Sometimes kids die" bomb seemingly out of the blue. As noted in that post, when I asked her why she was thinking about that, she totally punted and said she "didn't know".
Well, as we were driving back from Denver yesterday after having dropped off the rest of the family to head to NY for Nathan's treatment, Julia says to me, "Sometimes kids die". Again I asked her why she was thinking about that. She gave me some story about cars sometimes hitting trees and hurting people. It is so hard to know how deep to go with the kids about serious issues. I tend to take their lead and go as far as they want/need to go. I think it is pretty clear that she is piecing it all together, but that she doesn't quite want to take the train of thought/conversation to its logical conclusion.
She has shown some other signs that could be coincidence, but may not be, along these lines. Apparently when we were away on our last trip she talked a lot about missing Lauren, but little or none about Nathan. Earlier this week she was listing members of our family and omitted Nathan (This one could easily be a coincidence. She doesn't always keep lists and things like that organized in her mind.).
I suppose it goes without saying that I have a lot of fear and concern about Julia. I worry about how our family's focus on Nathan impacts her emotionally and I worry about how it will impact her if we lose Nathan. So we just keep doing the best we can and will continue to do so. Sometimes our best isn't good enough. Trust me on that one. Sometimes our best isn't good enough.
3 comments:
"Sometimes our best isn't good enough."
I'm sure that's true, but it's also not under your control. It is, after all, your best.
Crap
She knows too much and that is a source for stress unto itself. I understand your situation, when my daughter was diagnosed with stage IV NB, I really struggled with the idea of preparing her twin brother for her death, in the end I did not. We have been incredibly lucky and seem to be survivors although it took 2 years of fenretinide to clear her residual disease.
Julia seems to have an understanding that this is a serious situation. I would council that you leave her alone on this unless she exhibits related stress or Nathan’s condition deteriorates rapidly. Follow her, as you have been, but don’t get out in front of it. I say this because you don’t need the mental baggage of figuring out where the line is. You need to conserve your sanity that’s what we cancer dad’s need to function.
I wish I had some magic juju to blow your way, but we both know there is little of that around. In the case of sick kids there is never enough, can’t do it, it’s not possible. People always told us how strong and brave we were, I tried to explain it was none of those things, we had no choice, we did what was required. You are doing the same; DO NOT beat yourself up for any imagined lack of anything on your part.
If you screw up don’t do it either, you are in one of the most highly stressed groups that exists on the planet. A recent research project determined that stress does not cause cancer, guess who they studied, the parents of pediatric oncology patients. Daddy needs to be with it for this journey. Of course the good news is you seem to be really on top of this and I suspect the blogging really helps in the mental health department.
I wish I could help you more but I am running away from NB as fast as I can.
Hilary
"Sometimes our best isn't good enough." is true in any circumstance in parenting. :)
It's amazing how resilient some kids are with the cycle of life and death, and how well they understand it. I seem to think because they're closer to the Earth than adults or perhaps they're just "newer" in life, they have a special concept that we adults have forgotten.
You and Susan are wonderful parents to all the kids. I wouldn't worry about Julia's omitting of Nathan as some sort of premonition. It could be her own little internal self defence mechanism going on. Look at the situation as a parent on the outside, I think if it was one of my kids, I would remind them that even though their sibling is not with them physically, they're always in their hearts and minds.
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