Tonight

It's hard being back in this place.  I've felt it creeping back.  Looming in the background.  Rolling in like a dark cloud, or really more like the smoke that currently envelops our valley home.  It's not that I'm not thankful, because I truly am.  Thankful for the 2 years of good health that Jacob has had.  2 years of not having to daily face difficulties with his condition.  2 years free of pain.  Tomorrow we will find out if we can continue with our lives, as if his condition does not haunt us.  Or if we will be forced to face it again, and fight it head on.  I know it is an eventuality, so the question is simply, is now the time?

I always try to balance the burden of responsibility for pursuing needed medical intervention, with the desire to let him be well when he is well.  I'm hoping this MRI will answer the question for me.  If it is time to treat, it will show us.  I'm not sure what to hope for, honestly.  Of course I hope things aren't as bad as I fear, and would love to spare him treatment right now.  But that means continuing to wait for the pain to come, signifying the need for urgent treatment, which is a scary proposition, and (with our treatment being 1,000 miles away) a logistical nightmare.  On the other hand, if there has been enough growth to indicate the need for treatment, since he is still doing well, that gives us time to plan and schedule and make arrangements for travel to Boston.  It means treatment in a controlled, proactive situation, rather than an emergent one. So I'm not really sure what I'm praying for.

I feel a bit more prepared now, but in some ways less so.  He's older now.  At 3, he just rolled with whatever, and we really didn't have to explain in depth the bigger picture.  Now he's 5, and it somehow feels insufficient only telling him what will be done to him.  I feel that we should be telling him more, but where to begin?  His condition is so complex, simplification seems impossible.  How do I help my 5 year old understand when its hard for most people I know to comprehend.  So for now, I suppose I will keep with the who, what, where answers;  and I will wait for his mind to form his own questions.  Let him lead the conversation.  I don't know whether that's the right decision or not, but it's the one that feels right and that I have peace with. 

Tomorrow I will help my son play games with a mask.  Breathe into it like a diver, with strangers looking on.  Once asleep, I will hand him over to these strangers and entrust him to their safekeeping. I will wait, for hours, as they take pictures of the mystery inside his chest.  

Tonight I look at the moon.  Those of you who know me well, and who know Jake well, know how special the moon is to him, and thus to me.  I'm thankful for the gift of it tonight.  We kept him up late (since he cannot eat in the morning), and for a while, he and I sat on the porch and looked at it.  Wrapped in a blanket, we sat together; and I listened to him talk about his new bear, George, bouncy houses, his teacher and friends at school, how big the trees were I saw in California, the letter Y, and the moon.  Those of you who live here know that our area has been devastated by wildfires that have been burning on the mountains that surround our city.  It has spread all the way to downtown, and has left the whole city covered in a smoky, fog-like haze.  We haven't had enough visibility to see much of anything for weeks, but tonight, we saw the moon clear as ever.

It shines for you tonight, my Jacob.  And brings your mama hope for tomorrow.