Wednesday, April 5, 2017

The Weight of Things

A pound of feathers or a pound of rocks?  That always use to confuse me.  Of course the pound of feathers!  But a pound is a pound.

You don't realize the weight you carry until it's gone.  And when it's gone, even for one hour, the gravity of it all is profound and piercing.

This morning, I opened my email just as a message from Dr. Shimamura came through.  I was shocked!  I didn't think I would ever hear from her again and since she is primarily concerned with pediatrics, we moved on when she left Seattle for Boston. We emailed back and forth for an hour!  I was in tears!  She wants to jump back in to researching what we can do for Shelbie especially, but the boys too, given their new heart and brain problems.  She said that she has some new ideas.

As I sat at my desk in shock and awe I was overcome with the weight of so many things!  Sometimes, you don't feel the weight of something until its gone.

I was overcome that God has been good to us. I see everyday how sick my kids are but He sees them with a purpose and has things for them to yet accomplish. That weighs a lot! Still, its heavy to think that even with is hard!!

 As I listed in my mind, the incredibly smart and caring doctors we have, it's staggering. In the world of bone marrow failure, these doctors I rub shoulders with are revered and at the top of the 'Who's Who' in medicine.  Not many families who live with rare, orphan diseases have this many doctors concerned for them. It's not just about the big name doctors but the validation that comes because they see the problems we are facing. They take them seriously.  So often, I have been accused of making it all up, finding mountains in mole hills, taking things to extremes but the doctors see everything firsthand.  This thought alone is staggering and weighs heavy on my mind...we owe a lot to so many people.

Have you ever done something incredibly exerting... Took every ounce of energy, strength and endurance you had? Remember when you were able to take a break and catch your breath only to have to jump right back in to the hard things?  It is almost impossible to mentally work yourself back up, not to mention the physical strain.  It's a costly and weighty undertaking.  This morning with Dr. Shimamura's phone call and quite honestly, our Neuro-immunologist's messages yesterday, I felt a little break, a physical lifting of a burden I carry.  That feeling didn't last long and now, I pick it back up to carry on.  It's heavy.  I'm tired.

The more I think about the day, the more I realize that it's not about having another scientist on board.  It's being witnessed, acknowledged, validated and feeling something familiar in Dr. Shimamura's words that seemed like a life preserver, pulling us out from the shadowy isolation we have been feeling.  


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