Hope

Hope is a funny thing.  The higher your hopes go, the harder it is to fall.  Throughout this journey, we have been hoping for the best, but we also have been trying to be prepared for the worst.  To add to the challenges, we also have to keep in mind that anything in between might also be a possibility.

Making the order to not have your child resuscitated is a hard thing to do.  It's hard to find words to describe how you're feeling when this happens, but I'm going to try.  One of the hard parts for me when this has happened is wondering how others view our choices.  Granted, no one that we know has ever gone through this kind of experience, but still, I wonder what others think.

Certain conversations that Matt and I have had will be kept private, understandably.  However, one main concern we were having over the weekend was what kind of life were we saving Anna for.  Adults in situations like this have the luxury of choosing for themselves if they want to fight to live even if it means they may not be able to sit on their own, stand on their own, possibly even swallow on their own, or breathe without a ventilator.  There was, and still is, a real possibility that Anna has permanent nerve damage from the cancer.  In addition, the long-term side effects from the radiation are real.  We were faced with the reality of having to make that decision for a 6 year old.

The decision was not made easily.  However, it was made easier by the fact that we know that if and when Anna dies, she will be in a better place.  This is not a euphamism.  When Anna dies we know that she will be in heaven with Jesus.  She will be without pain, without cancer, in the arms of Someone who loves her more than we can ever imagine.  Those are comforting thoughts, and they are true.  Knowing these things brings a certain peace to our lives during this journey.

I get the sense that when people want to describe our recent experiences, they want to say "It's been hell."  But I would disagree.  Hell would be if we went through this without God and the hope that He brings us through Jesus.  But that's not even completely true.  Hell would be going through this without God, for eternity.  Kind of puts things in a different perspective.

I think I get a bit more philosophical after I've had a relatively decent night's sleep.

I'm here at the hospital with Anna today, tonight, and most of tomorrow.  At different times, she just needs to have her momma near to help her adjust, and I think this is one of those times.

In terms of Anna's health and well-being, she is already a living miracle.  She slept as normally as can be expected for a kid on the PICU last night and went through her sedation this morning for radiation without incident.  There are no longer any concerns about her ability to breathe.  The conversations about moving out of the PICU and even going home are happening again.  And this time, I don't have to do anything; Lynne is doing it all.

More of a miracle than all that is the fact that Anna peed on her own this morning; not on the toilet yet, but at least without a catheter.  We were told yesterday that Anna most likely experienced permanent nerve damage to the nerves controlling her bladder and would need to use other methods to void for the rest of her life.  We're not talking about wearing diapers or pull-ups, but "straight cathing" herself every four hours for the rest of her life.  They told us that was a fact, and we were prepared to deal with it.  But today she peed on her own!

We prayed very hard on Tuesday morning for God to give us clear signs.  He has.  However hard it will be when we fall next, we have hope again.