I haven’t written in my Blog for years and years. As a matter of fact, life has gotten so crazy that I’d pretty much relegated blogging to the category of “I’ll get back to doing that when the day suddenly becomes 12 hours longer.” But I had a talk the other day with my YaYa (hush…I’ve lived in the South long enough to start using such terms, besides, she and I have been through enough hell together that we can use affectionate terms like that without it being creepy) and she was telling me how writing in her Blog Herding Chaos (shameless plug here people…what are you waiting for…go over there and check out her blog…she’s waaay better at this than I am!) was therapeutic to her and was really helping her sort through her emotions.
So can I
take a moment to be honest? Some nights,
when I sit down and think about my Histio journey with Benjamin, I really,
REALLY start heading into Survior’s Guilt. I think about our little
clinic buddy who lost her battle to ATRT when she was 3. I think about how old she would be now and
heading into school. I look at her
pictures that her Mom and Dad post of Facebook and I remember her beautiful
smiles and her incredible journey. And,
selfishly, I think about Benjamin and how he is alive and well.
And I feel
GUILTY.
I think
about how Benjamin zipped through his chemo like it was nothing. I think about how lucky he is that he had
bone only involvement. I think about how
(other than a fairly profound case of OCD) he has had no side effects from
Histio or his chemo. And then I look my YaYa's daughter who is, at the ripe old age of 8, still staring down the barrel
of a liver transplant when she is a teenager (because Histio damaged her
liver).
And I feel
GUILTY.
I think about
all the other Histio Momma’s out there RIGHT NOW who are scared to death that
their child that there child might not live through the night, or that this
batch of chemo might not be working, or does this bump on his head mean that
the Histio is back. All things that
being 5 years into NERD (No Evidence of Recurring Disease) I no longer think
about on a daily basis.
And I
feel…wait for it…GUILTY.
Now don’t
get me wrong. I don’t spend my days
locked in guilt, dressed all in black, crying myself to sleep at night. But it does come up…often when I don’t expect
it. The occasional line in a movie that
touches on cancer. The Facebook
advertisments for St. Judes.
Before we
went on this roller coaster Histio ride with Benjamin, I don’t think I had ever
given Survivor’s Guilt much thought other than “Hmmm…that’s such a totally
weird thing for people to do to themselves.
WHY would people not be thankful for making it through something awful? WHY not just be thankful for what you
have.” But like so many other things in
life, Survivor’s Guilt is something you must experience in order to truly
understand it. It’s not that I DON’T
feel thankful for how (comparatively) easy Benjamin’s Histio journey was. I am. BUT, I have a heart, and I feel for my
friends. The friends who lost children
to cancer and Histio. The friends that
are still fighting. The friends that are
struggling with the aftermath that cancer and Histio often leave in their
wake. And sometimes I look up at God and
say “Why?”.
Granted,
it’s a different “Why?” than when we were first diagnosed. Back then it was “Why? Why God?
Why did you take my beautiful little son and give him this horrible
disease that ate his bones?! Why did you
bring this monster into my home to haunt my daughter’s dreams and make her
think that anytime something hurts it might be cancer?!” Now it is more of a humble “Why? God, you
healed Benjamin. You made it look easy. Why didn’t you do that for Jasmine?! Why not my other Childhood Cancer
friends? Why don’t you just wipe this
monster off the face of the earth?! You
did with smallpox. What are you doing
here God, because, honestly I don’t see the endgame.”
And in the end, God’s answer to me is usually
the one he game to Job. Namely that He
really is in control and even if my puny little human mind can’t see the
endgame 1000 years from now, He can. All
I need to do is trust. Which, quite
frankly, is sometimes tough.
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