Sep 2, 2014

How are you doing?

People ask innocently, meaning well.  Expecting a minute or two update or just to hear "fine, how are you?"

They have no idea how loaded that question is.

When a friend asked how I was doing a few weeks ago, she hugged me fiercely when my reply was "Do you want the polite response or the real response?"  I left tears on her shoulder.  Damn tears.  Those pesky things always seem to be on the edge of forming whenever anyone looks like they might, perhaps, be willing to truly listen.

Our little family is always receiving kind cards, messages, and such from people who are just letting us know they are thinking/praying for us and Drexel as we struggle with Drexel's leukemia.  No one has any idea how much that means to me.

Drexel is in a fight for his life.  This is the stark, terrifying truth.  Yes, his prognosis says 95% chance of total cure....but I'm terrified of that void 5% the doctors try to avoid when I ask about it.  Drexel is my son.  While three years ago I had just found out I was expecting and was all sorts of terrified/excited/nervous, now I couldn't imagine my life without this too-smart-for-his-age (seriously - this kid acts/thinks/interacts like a four-year-old), kind, energetic, vivacious young child who adds all manners of sparkles to my life.  What am I supposed to do if he is part of the 5%?  Doctors tell me not to focus on the 5%. Dahmon tells me not to focus on the 5%.  My new therapist has told me not to focus on the 5%.  I can't help it.  I'm Mom.

I'm watching my too young son expanding his vocabulary with technical terms for medical procedures, medicines, tools of the medical world, etc.  He has no idea that what he is going through is not typical for a two-year-old because the only children he sees on a regular basis are other children in the hospital who also have various sorts of tubes hanging off them like some kind of evil, mocking vines.  We can't allow him to be around too many other children because there are too many germs floating around them for his nonexistent immune system.

There was a farmer tending his field when he heard a commotion.  Looking up, he saw a rabbit zipping through his field in a frantic race for its life with a hungry fox hot on its tail.  Calling out to the rabbit, the farmer yelled "You gonna make it?"  
The rabbit replied (because of course all rabbits can talk), "I got to!!"

People keep telling me how strong I am.  These are kind words meant well...but strong?  The last thing I feel right now is strength.  When Dahmon has to physically restrain a sobbing Rex because I have to snake a nasal feeding tube down his nose since he puked it out yet again (oh yeah, I know how to put in a nasal feeding tube now), the last thing I feel is strength.  I just want to throw the tube away and sob with him.  When Rex is so out of it from coming out of anesthesia from yet another procedure that he is furiously thrashing about for an hour, the last thing felt is strength.  When he screams at the sight of a procedure room....strength?

I can fake it.  Fake the smiles and "it will be okays" and "I know, honey, we just have to get this done" for Drexel's sake.  But on the inside I vascillate between rage and sobbing.  Rage that my son, or anyone's son or daughter, has to endure this shit.  Sobbing that Momma can't make it better.  That what will make it better is allowing the doctors to pump my son full of chemotherapy poisonous chemicals when we've spent his whole life trying to keep chemicals out of him.

It isn't fair.  My parents used to say that "life isn't fair, get used to it."  But this is such a more terrifying kind of unfair than my brother getting a bigger piece of cake.

Strong?  Heck no.  I feel like a little girl who just wants to hide from everything, but Drexel needs his Momma to be strong.  So I fake it.  And I carefully word everything I put online so the cracks don't show...too much.  And I hold the tears at bay lest they take over - especially if Rex is around.  He just wants to make it all better if he sees Momma crying...he doesn't understand why there are still tears after all of his hugs and kisses (after all, when he has an "ouch" Momma's hugs and kisses make it better).

And I write.  How are you doing?  Do you really want to know?  Do you really want to know that I feel more broken, helpless, and desperate right now than ever before in my entire life?  That now I completely understand why it is not uncommon for parents of children with cancer to be diagnosed with PTSD following their child's treatment?  That I'm tired, so tired?  That the sight of healthy toddlers makes me want to sob because that should be Rex?  

But don't mind me.  This is just one of my overwhelmed days when putting my thoughts on-screen helps me to cope.  Writing helps.  Being real with people helps.  And so does sleep. It's almost midnight, I should go to bed.  Let's see if I sleep.