I Am Where I Want To Be

Quickly, on the treatment side of things, cycle 4 is off to a beautiful start.  The nausea is at bay and spirits are high.  It's our best start to a cycle so far.  Jonah's body is however starting to show small signs of fatigue with our routine; the audiogram indicated that he has a 2-tone hearing reduction in his right ear, his 24 hr methotrexate (mega chemo drug) level is higher than it's been and on a related note his creatinine levels are more elevated than they've ever been. This is a hard chemo regime, folks on the floor often say that Jonah is getting the kitchen sink of chemos, and the cracks are starting to show.  Even in that, we are grateful that we're off to a smooth start.

When our journey began back in July, it was expected that Jonah would remain hospitalized between Children's & RIC until around Thanksgiving.  As perviously indicated, at a recent care conference at RIC, the door was opened that there's a tentative possibility that hospitalization may look more like March.  No one is sure, but it is on the table.

March.  March?  March, March, March.  As a grown up, I suppose I could do this forever if I had to, and I certainly would for Jonah.  When you're 8, 6 or 3 and your parents almost feel more like visitors in your life instead of regular players, March is a lifetime.  I see it, the deep longing of my other children to have their mum & dad, really have them - to see them off to school every morning, greet them off the bus, help with homework, to referee the squabbles, kiss them goodnight and comfort all their bad dreams.  Their cracks are showing too.  They try and not ask, they try and not cling, but they're just kids and sometimes the longing is too big to contain.

It is in the breaking of my heart that I realize I am always where I want to be.  When I am with Jonah, I love being with Jonah and don't want to leave, think it will be too hard - what if something happens while I'm away, what if he needs me, what if I miss some big development again (his first returning sentence was spoken as I was pulling into the driveway at home)?  When I am with Noah, Anna & Julia, I love being with them and I don't want to leave - I want to see them off the bus, watch Noah at basketball, Anna at gymnastics, Julia at dance, I want to have a regular bedtime routine with them and get my moments back that are so normal, but also the fabric of relationship.

I am reading The Hardest Peace by Kara Tippetts.  Kara had 4 little girls and was diagnosed with stage IV breast cancer.  She wrote her book while walking her journey towards the end of life.  It doesn't take a genius to see why I would relate to aspects of her story.  There are many quotes from the book that stick, but on this heartbreak of the tug of time, she says, "Too much reality for too tender an age.  I cannot change the story, I'm so ill equipped to protect her (them) from our pain."  And that's my reality - I cannot protect my children from the pain of our story.  Right now that pain looks like wanting more of what cannot be given.  She goes on to say:

"We want suffering to be like pregnancy - we have a season, and then it's over, and there is a tidy moral to the story.  I've come to sense that isn't what faith is at all.  What if there is never and end?  What if the story never improves and the tests continue to break our hears?  Is God still good?  How do you life realistically when you fell like your moments are fading, fleeting, too momentary?  How do you fight for normal in the midst of the crushing daily news of more hard?  How do you seek hope without forgetting reality?  How do we share the story being written for us with our children while we try to protect their childhood?"

Kara presents no answers to these questions, just allows the space to ask.  I don't know how to do this, but pray is that the God who meets me in this story also meets my young tender children in a way that is real and meaningful to them.  I pray that their childlike faiths can see through the hurt and hard to God, their steadfast companion, both today and 20 years from now.  That as they reflect on these years they know they were deeply loved and that they did not grieve our time apart alone.  The possibility of March is a long time, but love is longer.