Shifting Gears

I keep hoping, wanting, needing things to go back to somewhat normal, and being disappointed when they don't.  Can't I just have a little of somewhat normal?   I guess not :(.  I was almost getting myself to accept (well kinda) that Andrew and I have to be in the hospital every other week for months and months on end.  I was just getting to accept that I have to give Andrew a shot every night, and swab his mouth with a disgusting substance three times a day.  I was finally beginning to accept the horrible reality that these nasty chemicals are the only way to keep him alive.  (But I was still hoping the side effects would be minimal). 

But now I am realizing even those expectations were too optimistic.  I keep finding myself brutally disappointed.  The day after my parents embarked on their vacation far far away, (thinking that we would be out of the hospital for a while), I found myself the next morning, crying in the ER out of loneliness, overwhelming sadness, and fear.  (John was with the boys. I was alone with Andrew who was in intense pain.)  When I went to Andrew's clinic appointment on our "off" weekend, expecting an hour appointment and hoping to escape somewhere fun afterward, I found myself spending the whole day there while Andrew got a blood transfusion, scrambling to find someone to pick up my other boys from school.  When I looked forward to a weekend at home with my husband and boys, and perhaps a little hiking, I instead discovered at 5 am that Andrew had a slight temperature and was in lots of pain.  Suddenly I was spending my anniversary in the hospital.

I am just realizing what it really means to live moment by moment.  It was all cliche before.  But now I understand.  My life can no longer be planned.  It ALL depends on how Andrew is doing.  My sweet baby. 
Every day will be a new surprise.  Andrew may be happy and play outside today, smearing paint on his toes.  Or he may wake up in agony, and end up on a morphine drip in the hospital.  There are so many side effects, and they all happen a different number of days after the chemo.  So while he may feel fine on Sunday, on Monday he will have extreme jaw pain and be unable to open his mouth.  While he may have a fun playful day on Thursday, on Friday he will end up in the clinic, being transfused.

So, on my anniversary, instead of spending it out to dinner and a movie, or maybe a show at the local theater, we are watching "UP" on the hospital TV for the 10th time.  I have a little cuddler next to me who (after some morphine) is finally eating a little chocolate ice cream and frequently strokes my arm in affection.  My husband is here on the couch next to our bed, working on some crazy genogram for the book of Jeremiah (he has some strange stress-relief methods) and still perfecting his Scooby Doo cartoons. My other boys are having a blast with friends....I am thankful they had a good day. And there have been some sweet moments here...

But this was not the anniversary I was hoping for, or looking forward to....  But perhaps that is the problem.  My approach to life has remained in "normal" gear.  And as much as I hate to admit it (and I do HATE to admit it) my life has become anything but "normal."  This anniversary in the hospital has given me a little clarity about the the new way I need approach my life.  I need to shift out of "normal" and into "kill the cancer" gear. I still resent it. I still wish we could all just go outside today and play. Because it is beautiful out. But I think I am finally resigning myself to the fact that this is how it is going to be for a while. Other people have gone through worse things...it is my turn now.


This year is all about getting Andrew better, it is about keeping Andrew alive.  That is it.  Anniversaries, family days, nights in my own bed, parties, and playdates all play second fiddle.  Each day I need to figure out what will best help Andrew, and go from there.  Does he need a little bit of sunlight and some fun? or will it be morphine and mommy time?  I need to be prepared to have my friends and family help me out regularly. I need to have support phone numbers and help ready to go, because I cannot shift into "kill the cancer" gear all alone.  I have two (three) other boys who also need my attention...(not to mention my own needs and sanity to protect...) 

Moment by moment, with one goal:  KILL THE CANCER.