Saturday, February 18, 2012

The Roller Coaster Ride. . .

Anyone that has spent any time in the hospital for anything knows a couple of things:
1.  You spend all your time hurrying up, just to wait. 
2.  Hospital time is different than any other form of time in existence.  It can move at the speed of light, and it can move at the speed of stop.  Some days you feel like you've been here for weeks and others, for hours. 
3.  Sleep is optional.  The days of doling out sleeping pills to patients is over and now, you have to beg plead an borrow to get any sort of sleep time assistance.  It makes no difference if the patient has been awake all night, thus the caregiver has as well.
4.  There are smooth patches and rough patches every day.  The size of the patches may change, but something good and something bad will happen every day in a hospital.  How you handle them is the key

So, we are at day 5 post transplant.  Trayvon's recovery is nothing short of amazing.  If only he realized it.  He is depressed.  He is frustrated and he is tired.  Tubes extend from his body and are draining stuff he refuses to look at.  The precious IV in his neck which has saved countless blood tests, has tape on it that is bothering him.  He new heart beats so hard it scares him.  He is, as he so aptly expresses, "overwhelmed".  The realization of what he was to endure with the process of transplant is foreign to him and now he wants to know why we didn't tell him about all of this.  He's mad. 

My heart breaks as he asks me these questions.  I'm sad.  When he has a "temper tantrum" about something, I become frustrated as well.  When he has pain, I'm mad.  We're both feeling the sting of reality today and though it doesn't belittle the progress or the awesomness of the gift of life, it's hard. 

He only wants to sleep now.  In the day.  To avoid everything.  But then he's up all night and therefore, so am I. 

Today we are going to "make him" get out of bed and interact, play games and express his feelings on paper.  He is fighting the idea with all he has.  He's depressed. 

We will be visiting with a counselor today or tomorrow to work through some of these emotions with Tray.  I will have to work through mine on my own. 

I miss my family, my husband, my children, our life, my happy go-lucky boy.  I know, this is temporary.  I don't need pep talks about the other side, the light at the end of the tunnel, the good will outweigh the bad, etc, etc.  I know all of this.  It doesn't help with today. 

So, day 5 and the emotional roller coaster has dipped a bit.  I'm sure tomorrow it will be something different.  For that I'm happy.

Til next time,


  1. Sending HUGE hugs to both of you. I hope you get some sleep. Don't let him sleep all day, as I know you are not, because that will only help deepen the despondency. I know this first hand. You are both enormous gifts to so many. <3

  2. sending my love, sleep, understanding your way, been there done that with Chavez's multiple surgeries. It just seems to get harder each day and then they hit understanding and things slowly turn around with a few ups and downs. Love you guys.