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Friday, August 29, 2008 at 2:05am | Edit Note | Delete
Ok so i had this beautiful blog all written up took me two hours to write and somehow i erased it , sometimes technology sucks in its simplicity . It took me until the end to actually title it. The jistt of it was that i had recently been to church and the theme lately had been "encounters with Jesus' i wondered if i would get a chance to have an encounter with Jesus, i craved one desperately. I enjoy going to church maybe not for the same reason as others .... i enjoy the reverence of my surroundings , i like the solemness, it feels so peaceful , i didn't have that expereince as a child and i am thankful to my children for exposing me to it , i always leave feeling protected guided and comforted. As for the rest of the week ,it was time to get on with the summers end rituals, do you have rituals (OCD"S) you feel you must perform certatin seasons of the year? In the summer my kids and i need to fulfill certain traditions. We love to go to the old fashioned candy store in Matsqui village pick out unique candy and go to the park and share it , the kids love to climb the willow tree there every year , it grows along with them every year. we also go to Birchwood Dairy and take our time pickin out ice cream then feed the horses and eat our ice cream . Ashley recently got a beautiflu auburn wig and as they ate their ice cream i looked at them and noticed the uniqueness of each of them not only in the ice cream they chose , but the way they ate it, and the rainbow of who they are; Ahsley with her red hair, christy with her diyed black hair, stefy with her bright blue wig and britt with her bleached blonde dew , wow i thought how different they all are , never noticed it so much before. Another ritual we have is gathering helium balloons attatching notes to them and relasing them into the universe ,this year was no different , except i think the notes were directly written to God and i think the prayers were all similar . I imagined God recieivng these balloons and smiling , i was hoping it made him smile , im sure ive left him a few times with a furroowed brow so the smile would be a good thing. As we released the balloons and they made their way into the skyscape within seconds i thought to myself how quickly time can take something away and although we can't see it we know its out there maybe just in the next dimension(no i havent been watching star trek) I wished i could have hung onto the ballons a little longer.
Ok enough with the lofty stuff, apparently the kids have added a new traidton ...shopping in the States for back to school stuff...yeah but i can't stand this time of year... when the news interviews supid parents who spend a gajillion dollars on their pampered princesses to outfit the label mongering oblivious brats for back to school , however my kids guilt trip still has some milage on it, so off to the States with christy , stefy our neighburs and NO birth certificates,, yes i have cancer of the brain ...not to be confused with brain cancer... just a condtion parents of cancer kids get. I wanted to turn around but was stuck... so my car got a full body search, thankful it wasn't my body search, the u.s border guy didn't deserve it/ He interrogated me , accused me, wondered several times if i had been denied entrance , i tired to recall any indecretions but nothing came to mind.. i wanted to reach overthe counter and >%^%&* him ,(did i mention i recently attended church) after the second search i think they came across my "CHILDREN WITH CAnCER" BINDER , they let us go, kids got what they wanted ..over priced u.s. merchandise(crap) and i couldn't stop shaking, i was thankful to be Canadian , thankfu to my neighbour who tried to dsitract and comfort me.
Today i woke up worried, with little sleep, typical of a day heading into the clinic, darcy sat at the bedside and tried to comfort me before going to work but it was raining and i think weboth sat there in silence forthe longest time dreading the day before us wondering how the hell we got here.
Chapter 2
Ashley asked if she could bring her friend Baillie into the clinic today, im so glad she came, she added her humour, her wit,t her down to earth attitude and sponanaity into the day, she is such a good friend , and she seemed interested in all the day offered , needles, bloowork, transfusions, dr's nurses, chaos, she was areal trooper. unconventional and a breath of fresh air... she came on a good day, they got to meet Micahel Buble, they weren't shy in admitting they didn't really know who he was, i didn't care they were coming with me to meet him. He is a great guy, personable friendly, came right up to me and shook my habd and took his pic with the girls, a real delight and a perk in this whole thing.
As we were getting ready to go the Dr who did/halted Ashleys experimental thing last month came into give us the details of the re-do , he offered hope for tihs re-try ...no promises ..no guarantees but some comfort. He is explaining all this in a very busy hub area of the clinic, nurses running around , dr conferencing, parents pacing , children crying, i started to walk away and he put his arm around me pulled me into a close hug , it ;lasted for a long several seconds ,he didnt say anything but tears came to my eyes(as usual)and i didn't have my normal resistant "i can do it myself" attitiude and it felt like the whole clinic chaos stood still for just a second, it was out there ,open, visual and very poignant and unexpected , all was well for just a minute...was this my encounter? was this a mesaage a hug from above? he moved into ashlyes room and gave her an unexpected hug too the tone was reverant and meaningful , im sure Baillie wondered what it was all about but things were quiet , even our nurse just took it all in for a second. i t was a human moment on a spiritual level. we left ,the girls were quiet , it took us two hours to get home...two hours! ..coulda driven to merritt form abbotssford...wait a moment why the hell would i go to merritt .. ithink i have inlaws there.(did i mention i had been to church lately)i wondered what Baillie thought of the day they didn't talk much, but each had their ideas of the day. We made it home and the day ended better then it started with no real great news but perhaps the apiifanies and encounters i was looking for, i also realized i can be me and still go to church, i am not perfect, I just want to be guided in the right direction, i think that's all any of us want? Thanks for everything
Peace,
Lori
P.S.
To Logans mom Jen hope you r%$$#@day is better tomorrow, youre still an inspiration, saw Logan colouring a picture in clinic today , she lit up the room with her presence, i could feel it
The Journey of a butterfly...Ashleys life has become symbolic of a butterfly, peaceful beautiful and free to fly where the wind takes her. We have a white butterfly that flies around us in the garden in the springtime where the other girls play. Irish folklore tells us that a white butterfly is the rebirth of a deceased child's soul reborn into something even more beautiful than before...our butterfly
June 29 1992 - February 16 2009
Welcome to the Journey of a Butterfly
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...
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