Saturday, March 10, 2012

Then and Now

I wanted to share this (with permission), it's from another mom who lost her son to cancer. It speaks for everyone who has lost a child. Here is her Caringbridge page if anyone wants to leave her supportive messages or read their story.

"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 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 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, beautiful 12 yr old running buddy and best 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 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 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 with no treatment 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.

maybe tomorrow"

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.
 Now all I have to do is dust his urn and rearrange his shelf now and then. I finally took down his little Christmas tree yesterday, put his picture in a frame and got out the little Willow Tree figure a friend got us. It's the wood one of the Angel holding the little boy.
Dawson has a trophy saying he's a special "Super Sibling". He'd much rather have his brother though.
 We took this book of prints the week before Tyler died. Green is Dawson, red is Tyler, purple is Gabriel.
 Now Gabriel's hand has caught up to Tyler's, who will never grow again. It's a hard concept to think about. We're passing him up, moving on. We don't want to, but we have no choice.
 Sibling feet
 It's amazing how babies grow in just 4 months.
 It's hard to see Gabriel playing with all Tyler's cars, his trike, wearing his clothes. Not sure if anyone has noticed, but Gabriel wears the same several shirts most of the time. I can't handle putting him in the rest of Tyler's clothes. So now I'm looking for 18 month t-shirts.
 I got a surprise in the mail yesterday! Turns out someone started this blanket, many people from some online groups got together and each made 1 square for us. It's a great reminder of all the different people who care for us. Dawson took this picture!
 Dawson immediately wanted to cuddle with mommy in it.
 Then Gabriel joined us. He has a cold and is feeling pretty miserable, so no smiles from him lately.
 I managed to tickle a tiny smile out. :)
 Dawson wanted a picture with Gabriel, but he was having none of that. I love how Dawson was still posing for the picture anyway.
 He's so cute! Good thing too. Just after that he decided to take the handheld shower head off and flood the bathroom. Again. So I mopped up the floor. Again. I was feeling that cold coming on and was not happy. So since we're working on emotions I decided to take the opportunity to discuss my feelings. He learned "mad", "angry" and "not happy". So at the end I asked him to make a happy face, then a sad face, then an angry face. He's good at happy and sad, but was doing all sorts of funny things with his face trying to figure out an angry face. He ended up doing an extreme sad face and then bugged his eyes out! I'd say that was pretty accurate. ;)
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. 

1 comment:

Feisty Irish Wench said...

I am so glad the blanket got to you safely, and hopefully it will bring comfort to your family. It is modeled after the blankets done through the Schuyler Blanket Project. Everyone keeps thanking me for doing this, but honestly, like I told you in the letter, it was an absolute HONOR to seam this blanket for you from the squares the other moms sent me.