Coming Home

It’s our first day home from the hospital and while I do feel great relief, there is also a weight of sadness plaguing my heart. I know this feeling. I recognize it because I’ve experienced it many times before. It is the resurfacing of grief. 

The unique thing about having a child with a brain injury is that there is not one single moment in time that you must grieve.  There are many.  It is a journey, one that often progresses, leading to the unfolding of many small grief processes again and again as the years wear on.  Like the peeling of an onion, there always seems to be another layer.

Today I feel overwhelmed. My body is exhausted beyond belief. I feel like I have just run a marathon and then, at the very end, gotten jumped and beaten up by someone. My muscles ache all over and my emotional pain clings to the physical to create a giant puddle of hurt.  As the years go on, each hospitalization taxes my tired body more than the last. The sleep deprivation and the stress and the trying to hold it together… They take a toll.

So I can’t seem to escape all the feels today. And I’ve been through this enough times to know that that is OK. I am allowed this day.  A new diagnosis brings a new grieving process and those take time.  Each diagnosis Oliver has been given -and there have been many- is another kick to the gut… Something that has to be heard, accepted and processed in it’s own time. 

So today I took a nap.  I poured myself a glass of wine at 2 PM.  And I cried. 

We will settle in to our new normal.  The suction machine, the extra breathing treatments, using the g-tube more and the pulmonology appointments will all blend into the fabric of our life over time. I don’t consider any of them to be heroic measures. They are just extra steps in a life that already has so many steps. And today they all feel like too much.  

So I allow myself this space, this moment of misery, this creative expression, to feel deeply the grief in this step of our journey.  It is temporary.  And in a couple of days I will awaken refreshed and ready to continue on this fight for my son’s life.  

But for now, I admit defeat and simply feel the magnitude of this Odyssey.      

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