"july 9 2011 (caringbridge post)
there are many like me...we who've watched our children fight for their lives, day to day, minute to minute. many of 'us' left behind in agony and shock, when our sweet ones can no longer fight, and their tired little bodies surcome to their disease. yet i still feel so alone.
many of 'our' children have fought and then in the end, found their peace...leaving many like me with broken hearts and empty arms, feeling like the spoils of an awful war that is now ended...stranded and lost in the middle of a quiet, dark, empty battlefield.
we are left with no choice but to attempt to rebuild some kind of life...but first we have to find the strength to breath in a world without them, then the courage to stand even though everything about us feels so broken. somehow we have to find our way out of this place of sorrow...but when we attempt to step out of the darkness...we have to do it with such empty arms... reminding us of what we have to step out of the dark without. moving any direction without them feels too much like leaving them behind...but really...'we' are the ones left behind.
when you're told your child has a life threatening desease...it consumes you. your child suffers the horrible symptoms and the physical pain, but you share their mental and emotional anguish and fears, to the point that you also are deseased. i still have cancer of the mind and soul...my boy is free of it...but i am not.
i have to believe that odie's torturous journey was for some purpose. i dont believe God makes these things happen but, surely He has a purpose for letting them happen...especially to our children. so i wonder if maybe the suffering of all the me's that are left behind, might also have some purpose. i will definitely never be what i was... and i have no idea how to stop being the mess that i am...can only hope to be more than this one day.
memorial day weekend 2010, odie...my beautiful 12 yr old son...my running buddy and best friend...my little room-mate...was told his body was at war with itself. instead of a pep talk about how he could beat this if he fought real hard...he was given the truth. the truth being, he could fight to hold it off, but...short of an all out miracle...his type of cancer wasnt something they knew how to beat.
so odie and his doctors went to battle. i stayed at his side...day after day...night after night...week after week...month after month...but all i could do was pray for his miracle, administer his 'ammunition', bandage his wounds and send him back into battle...in a war his body was loosing...we were loosing. we all prayed so hard for his miracle.
life this last year was so full of people, noise, and movement... but now its all gone quiet...the kind of quiet that makes an unbearable sound. life feels like its over...but i'm still here?... i've been left behind... and the things i've seen can never be unseen
now i have a painful disease...one with no cure...no treatment plan...one i have to live with for the rest of my days. God oh God please show me how to do that. help me step forward. give me the grace to honor Odie's little life with the rest of mine. please let there be a purpose.
when i would make mention of his brave spirit, odie would say something like "i'm not brave...just doing what i have to do." God help me to do 'what i have to do'. there is no path...just gonna have to look up and step out...with such empty arms.
Many parents I've talked to refer to times in their life as "before his death" and "after his death". It's so true, a totally different phase of life has started. One where the hospital, clinics and medical treatments are no longer a part of daily life. Instead we watch videos and have a shelf of medical supplies.
I used to give him sink baths, flush his lines, he required lots of care, but I didn't mind because he was still with us.
Dawson has a trophy saying he's a special "Super Sibling". He'd much rather have his brother though.
Hopefully we all get over this cold soon! We have places to go and people to see! I can't stand being cooped up, we're all going a bit crazy.