June 29 1992 - February 16 2009

Welcome to the Journey of a Butterfly

Welcome to Ashleys Journey,

We invite you to follow along one family's journey through grief and loss, one brave young girl's journey through faith and inspiration, this is not a blog to convert anyone , nor is it a blog about fundraising , it is what i hope will reach another family on a similar journey, we are not experts , i could not give you a magic remedy for how one gets through disease and devestation but it is our story , sometimes gut wrenching other time heartwarming and all of the time, i guarantee, very real. We are not perfect, we struggle daily and i think that the more we connect to one another the more we understand what this journey through life is all about . Sometimes that path is bumpy and we fall down, sometimes we sit and stop a while,or take a step back and other times we pound our fists on the pavement like a lunatic , still other times we find ourselves picking eachother up dusting eachother off and walking alongside them even if only for short time. This blog is dedicated to Ashley , her sisters and every single angel that picked us up along this road.
This is an introduction to the beginning and middle part of our journey the specific blogs are more indepth , the end...well there will never be an end to this journey i've come to realize that , not on this earth, for now we just assimilate it into our life like a hole , a missing limb, a continous ache that you just learn to live with.
When Ashley was about 12 years old she asked if she could go to youth group at a local church , i didn't have any church upbringing but know i craved it throughout my life , this was a rare opportunity and i recognized that if i didn't embrace it now she may lose her interst in it very quickly and beocme a jaded, cynical, stubborn person like her mom. My husband grew up in a very religious (shove it down your throat) kinda religion( i wont mention any names)or maybe it was the way he was raised ? Anyways i encouraged her to go because the community we had moved to embraced this kinda thing so i thought why not? Naturally and shortly after she started attending she was soon encouraging us to go , she had made quite a leadership name for herself there , pionner leader , sunday school helper etc, i was comfortable for the first time in my life going to a church, maybe it was the first word that greeted you as you walked in..."belong" maybe it was because they embraced community and outreach service in our city , dont know, but soon found it very therapeutic, cheaper than a shrink, and our other 3 girls jumped on board pretty quickly, my husband well... a work in progress , he communes with God in a fishing boat he says , although makes many efforts to go even if just for good way to start the week, i was still cynical , felt i wasnt holy enough but went anyways.
Ashley was scheduled to sing a solo in the church choir Dec 16 2007 , i was scared for her, i was sure she got her singing skills from me which was nil at best. She sang beautifully and you couldnt tell she had been complaining of cramps , something i chalked up to girls stuff/growing pains for a couple weeks off and on, she was an active healthy girl. When the performnce was done we got our christmas tree and i took her to the clinic to have it checked out before Christmas , they sent us to our local hosptial for tests , i was worried it was appendix. Darcy, my husband left the hosptial to go pick up our other 3 girls from friends houses , i caught the doctor in the ahallways and asked if the ulstrasound pictures were back, i remember having eye contact with Ashley only feet away from me but far enough away for her not to hear the doctor to so impassionaltely say "its not appendix, it looks like cancer", i have to stop as i write this because it is still one of the 2 biggest shocks in my entire life, i think i ran down the hallways screaming with no sound coming from my throat and not knowing where i was running . I phoned Darcy and words didnt come out of my mouth. Before I knew it we were at out local Childrens Hospital(100km away) meeting oncologiosts , being give an "oncology team" which consisted of a primary nurse, a social worker, a main oncologist and a shrink....wait a minute ...what is an oncologist? yep, a cancer doctor, this was the real thing . we waited 4 days to find out what type we were dealing with ... it was curable 90 % even though she was stage 4 , how the hell can my kid have stage 4 cancer and only a few cramps , it was mind bending. We were thrown stright into a world so foriegn to us , everything stopped ..jobs ..PAC meetings ,carppoling and yes even some friends who"couldn't handle it" it was no longer our own beds , our own home, our own anything. Treatments and life became unbearable , the 90% cure rate was not looking good at any stage throughout our journey , it seemd to be always full of negative news to the point where i couldnt stand the face of her oncologist , it nearly made me want to vomit everytime i saw him...The words they briefed us on as we began this mind altering path was " one of you will grieve through this process and no matter the out come the other will grieve after " they couldn't have been more right.......Ashley insisted on going to church on Christmas eve, two nights before she was to start chemo at the end of the service our pastor came to pray with us , i didn't know many people in the church , but wow did they know Ashley, when we rose our heads from bowing in prayer the whole congregation was surrounding us , i knew at that moment who i was going to need to get me through this ...would he be willing to listen to me...

Friday, December 16, 2011

Four Years



Dec 16 2007

Me: "Dr. have the ulatrasound results come back yet?
Emerg Dr: (pause) "Is  your husband with you?"
Me: "no, he should be here soon , he's picking up the kids,why"
Dr: "the test result are in and it doesn't look like appendix"
Me: "Oh good then what could it be"
Dr: "I'm sorry ma'am but it looks like cancer"
Me ...inaudibility.

Today is Dec 16 2011, 4 years since those words entered my ears yet could  not find the signal to my brain. somehow it just registered as static, static that blurred my vision and numbed my body one inch at a time until i was paralyzed and running frantically at the same time and somehow it can still do that to me if i let my mind wander too far.
Tomorrow i will send an email to her oncologist, like i am acknowledging some sort of weird warped anniversary of the "day we met" He will email me back and ask me about the girls and what they are up to, he will ask me to give my best to Darcy( cause i know he liked him better than me ... go figure?...lol) and i will ask him about his kids  and his Christmas plans and maybe he will go home that night and he'll either be pleased i still keep in touch despite everything or he'll be reminded of what a crappy job he has sometimes, and unfortunatley he will probably awake the next day and receive another email from a crazy bereaved mom he used to have to "handle' and remember another anniversary of the "day they met"

Thinking of all my bereaved oncology parents. particularly this time of year as we face this with a different reality than most . if the other days of the year are difficult , Christmas and Birthdays are almost unbearable in many ways, sometimes almost wishing that we could just fall asleep until everyone was finished with the merriment , wake up again in the spring. We don't want to write Christmas cards but we don't want our child to be left off of the ones we receive , we want to attend the Christmas concerts but can't help but tear up at concerts past, we want to hang decorations , but can't bear to unwrap those homemade decorations from Kindergarten , we don't want to be downers but probably need uppers just to paint a smile on. It is a marginalizing time of year for bereaved parents , i am grateful to have a home , family and food to eat but i think sometimes this must feel what its like to be those set apart as "needy"or one of the "have nots " just in a different way.

So this is what i imagine for my kindered friends , our kids are   singing and dancing and playing their instruments , having a party , older ones taking care of the younger ones , they are seated and honoured at a very special table having a feast and giggling and waiting for the day we are seated all together again.

To everyone else may you enjoy this time of year , not for the presents ,or all those unneccesary tasks you think you have to do ( you don't) or the hustle and  bustle but for the challenge you can make yourself by celebrating, living and spending as comfortably and as simply and as peacefully as you can.

May God's comfort , peace, love and joy surround you always and prepare you for what life brings you.

Peace be with you,
Lori












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