The release

Butterflies
Well the butterfly release in her garden was amazing ,so many people joined us either in body or spirit to set our butterflies free, however my little butterfly decided to hang out on me for a good 20 minutes , i contemplated several times whether to just capture her and place her safely in a treasure box where she would be safe , but that is not what butterflies were made to do.

Thank you everyone , the sun was shining and we were in the company of a handful of Ashleys favourite people , thank you to everyone else for your warm thoughts, gifts and prayers. You'll be happy to know we served Ashleys favourite foods and ice cream cake too. she was with us everywhere.

Happy 18th Birthday Ashley, we miss you and love you very much, gone but not forgotten

Happy 18th Birthday Ashley

Good Morning Ashley,
Today would have been your 18th birthday, words cannot describe how much i long for you and how i imagined your 18th birthday would be. I miss your smile and the softenss of your skin, i only have that in my dreams now , i can only feel it now, drink it up now, by watching the butterflies bounce around in your garden. You continue to inspire and teach those you left behind what it truly means to fly, to be free, to live beyond what this world can offer. I pray you are saving a place for us and i look forward to the day we meet again. We have been raising butterflies from caterpillars and i have to say watching them grow into such beauty and emerge into gifts from God has been reminaiecnt of watching you grow and fly away, it will be hard to let them leave , my heart, my selfish hands will hesitate and want to hang on a little longer and cover them up and protect them ,not let them go , but i know better, i know that I can't . i have to set you free, to explore , your work is done and now you must just send little reminders once in a while that you are here and amongst us and you are doing what every butterfly does ... brighten the lives of those around you, make us stop, smile and thank God for your beauty. Happy Birthday Ashley.

While Waiting For Thee

Don't weep at my grave,
For I am not there.
I've a date with a butterfly
To dance in the air.
I'll be singing in the sunshine
Wild and Free
Playing tag with teh wind
While I'm waiting for thee

P.S. how fitting that the daily puppy ad beside your blog today happens to be a yorkshire terrier , Sophy, we miss her too and celebrate today 11 years ago when you two first became soul mates

Prom June 2010

Well its midnight and I have contemplated off and on all day what this day would have ,should have, looked like for you , for us. As i awoke this morning i day dreamed that maybe you would have taken Sophy for a walk and started getting ready for your big night ,your dad would make you pancakes for breakfast and we would present you with a beautiful ring or something else significant, maybe a camera because your photography skills had really taken off, Brittanny would hand you beaded friendship bracelet which you would have put on to make her happy. Maybe you would have had some friends over had a swim and hot tub before helping eachother with hair and make up , i would have brought you all your favourite foods and maybe your dad would have wandered in off and on from the garage occassionally telling you how pretty you looked, maybe you'd be telling your sisters to get lost but they would be wanting to watch in awe of their big sis. Then it would be time to get your dress on, the one your sisters and i went dream grad dress shopping for , it was so pretty , like a rainbow. It would be time to have maybe some more friends over, we would talk with the ohter parents about how fast time has gone and how we recalled each of your preschhol days and each of your fututre plans, how we would take a million pictures and videos , some by the rose bush , some by what is now your garden , some with the citizenhsip scholarship i know you would have won ., pictures with me and your dad and some begrundignly with your sisters and of course some of you being silly. Soon it would be time to say goodbye, maybe you had a date or maybe you just decided to hang with your friends , either way i know there would be a boy who couldn't wait to dance with you tonight, maybe he bought you a beautiful white corsage. Your dad would read you the riot act and make you promise him the moon and the stars before letting you go. We'd wait all night to make sure you got home safe but we know what a good kid you are and how much fun you create with out anything dangerous, you'd phone us once or twice or maybe you'd forget as you always seemed to. I know you'd eat lots at the banquet and not care what anyone thought. You'd dance with your friends and maybe that special boy who was honoured to have you on his arm because you were the most beautiful girl there.As tomboy and jeans and tshirt as you normally are this night you were a princess. You'd come bounding in the door at a fairly decent hour maybe having recieved a kiss goodnight from that special boy , you'd tell us all about your night and you'd be giggling through the silly antics. Your dad would kiss you on the forehead and tell you how proud he was of you , how beautiful you looked and ask you to go fishing tomorrow, he would go to bed thankful you were home safe . I would sit with you and watch you as the night spun through your head and wonder where you go from here , imagining the next exciting steps in your life , i would kiss you on the forehead and tell you how proud i was of you and how beautiful you looked as you lie your head on your pillow and drift off to sleep waiting for tomorrow. I would pour myself a cup of tea head off to bed and lie my head on my pillow and thank God my daughter is safe.


Okay well sometimes life doesn't go as planned and as i walked outside just before writing this to lock the door a beautiful gold butterfly flew towards me into the light of the door just to say goodnight. I am off to bed now and as i lie my head down on my pillow i will thank God my daughter is safe

Convocation Coccoons Christianity and Craziness June 2010

Convocation, Coccoons, Christianity and Craziness
Today at 10:15pm | Edit Note | Delete
Oh man , what a month. I don't understand why everything has to fall at eh end of the year , it seems like teachers, coaches, etc feel compelled to provide some sort of wing ding at the end of the year multiply that by 2 , 3 , 4 or more kids and it loses its pleasure in the mirco management of year end planning....here's a thought leaders..."you'd be doing us all a favour if you all got together and spread out these activities between February and April .sound good ? i'll have my people call yours...or better yet, hey don't feel obligated to do anything, i would like you more and really you'd end up with a better year-end gift than a dollar store mug".

Okay enough ranting i can't blame it all on teachers schools coaches etc life is crazy, i promised myself i would never let it get crazy again , that when i noticed things spinning outta control i would ask myself "how important is this ,really?" Back when we were hospitalling , we didn't have a choice that was not only crazy but insane.

I won't bore you with the mundane, just the highlights ...Christy and Stefanny are now working together for a family friend who imports retail fish ( goldfish, tetra's , frogs , those kind) not a diva job by any means, so not only do they bicker over clothes and make-up every morning they now roll themselves in the door at 6 pm arguing about whose fish is better , who packaged the most fish and who killed the least ...ah fish bliss, i'm sure they will laugh about it one day.

Ashleys scholarship was given out a few weeks ago , i couldn't believe how nervous we were didn't realize the enormity of it i guess until we got there, hard sitting alongside people on stage that are giving out a token of their fallen son, daughter , grandpa just wanting to scream out "remember this person they made a difference in the world" , they are here they are holding the hands of the person (family) stretching out their arms with a gift they are holding the hand of the person so deserving of receiving the gift.Ashley was there. We kept it together even when the grand march of grads entered the church sanctuary to scottish bagpipes and i forced myself not to look at where i assumed Ashley would have, should have, sat. As we were called upon stage a very lovely person whom i've come to know recently yelled out inside a very somber room" love you lori " what a comfort , what i nice thing to do what an act of empathy .. thank you leanne. Anyways our recipient to Ashleys award was Amy T. it was an obvious choice, someone i know Ashley would have chosen, funny cause i could see Ashley with her big smile saying "way to go Amy" Glad to see her other very good friends recieve shcolarships too (jacquline , trinda)Deepest congratulations to all the grads, enjoy , have fun , be safe. For us , as sad as it was sometimes watching kids fill the seats at convocation , ones she went to pre school with , ones she went to elementary school with ,ones she had sleepovers with , i told myself over and over again...she has reached even higher than this , she has graduated and triumphed beyond this, she has received a greater glory, a greater crown , she is ok. We left when we knew we had enough and i'm kinda sad we didn't stay , i later found out that valedictorian talked about Ashley , talked about her smile and her free spiritedness , her attitude , maybe it was good i didn't hear that there , I may have lost it. Thanks Corbin.

A big thank you to all our donors, runners, sponsors and supporters for your contribution to Childrun this year,our team grew by a few more this year including my sister and niece, we were proud to join forces with "Logan is our Angel " what an event , Logan has fought brain cancer for 5 years was not expected to be the miracle she has so eloquently developed into , i'm sure you've seen her big smile and angelic face plastered everywhere , she was the poster child this year and we were honoured to be part of the team , in keeping with our annual commitment to tell Ashleys story we still ran under "Ashleys journey " and this year we had t-shirts made up in her name displaying a butterfly of faith on the front. The evening before was a "team Logan" fundraiser , where again, our brave girl was honoured too., i think the goal was far surpassed, reaching 35,000.00, Lu Lu Lemon guy, Chip Wilson matched the donations , so over 70,000.00 in one unblievable night ..not bad, was nice to see and meet up again with other families/ parents running and supporting in the name of their child, some whom i have only met faceless on facebook , funny how you can spot them in a crowd of thousands. Childrun has been kind enough to donate extra large left over tshirts to Ashley comfort bags for sleepshirts for parents...nice huh?

Butterflies are coccooning as we speak , this year we decided to raise butterflies , for release on Ashleys upcoming 18th bday on the 29th , so far i don't think i've killed any , we'll see , notice no live plants in my house , theres a reason for that.

On a side note , i have recently started a blog in ashleys name, i have ported all the blogs since the beginning of this journey from facebook to the blog , i suppose i did this because i hope in one way or another it reaches someone desperate to find out that as hell as it is losing a child and sister that there is peace in knowing that we will see eachother again , that as ive said before this world is temporary, it is a PRACTICING place , a place to let your hearts be broken to the suffering of the world and to the people right next to you, to see what you do with it. Thank you for doing something with it.

Summer is on the horizon , can't wait , no schedules , no school notices, no packed lunches to make, just fun in the sun ( wherever thats been lately) although it already seems so booked , Darcy and Christy are off on a whitewater rafting trip soon with Christys church youth group , Darcy is driving the bus , excuse me while i kill myself laughing , someone ,not sure who , is in for a real treat...lololololol. Ahhh speaking of church , enjoyed the church sermon a couple weeks ago about not being fake , or putting on the appearance of just looking like "a Christian" that its imprortant not to just look the part , to really DO and FOLLOW and SERVE. i look over at Darcy who happened to be wearing a suit...k you probably no where im going with this.... our pastor comes up to us at the end and remarks how good he looked , i owned up , i admitted that he is only wearing a suit because i haven't done laundry in 2 weeks , cause i 've been too cranky with all the "year end" suff and working full time for the last 2 weeks to do laundry , and the reason our kids are looking so cheery is because we decided to stay for the brunch after church because i haven't gone grocery shopping either, so they are just happy to be fed , "eat up kids", I told you i wasn't made for f/t paid labour , I can't do it all and i don't aspire to "doing it all" No fake Christians here , maybe not always great ones either, but PRACTICING as best we can.Thanks for reading

Peace,
Lori
p.s. here is the blog info http://followingashleysjourney.blogspot.com/
p.p.s congratualtions to all my amazing children on all your year end successes, dance rugby academics, and your courage... you're awesome!
A special conGraduation to Baylee, Ashleys BFF , you're a great friend and i can't wait to see you in your dress.To Shakira , Ashleys cousin, you should be very proud of yourself, as well to Jordan Hopper Ashleys babyhood friend and "ashleys Journey " team member Good Job Jordan, we are very proud of you,Amanda S , Sara M and many many more good luck and prayers to you all.

Poem..Save A Place...April 2010

save a place for me
Wednesday, April 21, 2010 at 11:32pm | Edit Note | Delete
Don't be mad if I cry
It just hurts so bad sometimes
'Cause everyday it's sinking in
And I have to say goodbye all over again
You know I bet it feels good to have the weight of this world off your shoulders now
I'm dreaming of the day when I'm finally there with you

Save a place for me
Save a place for me
I'll be there soon
I'll be there soon
Save a place for me
Save some grace for me
I'll be there soon
I'll be there soon

I have asked the question why
But I guess the answer's for another time
So instead I'll pray with every tear
And be thankful for the time I had you here
And I wanna live my life just like you did
Make the most of my time just like you did
And I wanna make my home up in the sky
Just like you did
Oh, but until I get there
Until I get there

Matthew West
Today is 14 moths since we all last said goodbye to you at the service the same amount of time you fought your brave battle ...miss you every moment of every day and i wait patiently for the day we meet again

Author unknown)

What If's....April 2010

what ifs
Tuesday, April 20, 2010 at 1:19pm | Edit Note | Delete
The month of April is such a funny weather kinda month, at times it can be mistaken for a hot summer day ,others a rainy blustery fall day, or even a downright out and out winter day , it is probably the only month that one could get completely confused in if they were void a calendar or computer all month, sometimes it has Easter /passover in it sometimes it doesn't. Sometimes were gearing up for camping and other times topping off ski season.
My favourite sounding day of the whole year is April 7 i don't know why there is nothing signicant to me about it i just always loved the sound of it, call it querky.
Last weekend the sun shone brightly and the wind whipped through the Fraser Valley , Darcy and i were driving along the highway back from Harrison , i rememebr looking up to the hillside as we entered Mission and the sight of the Monastary came into my view, the sun shining down upon it , I couldn;t help but remember the hike Darcy and i had taken Ashley there on for her 13th birthday , we were hot and sweaty and dirty as we climbed the hill , and reached the top, Ashley out in front, leading us as usual,, it is where we chose to give her a heart locket and tell her how proud we were of her for all the decisons and spitritual paths she had recently chosen in her life . The memory i was so fondly remebering was quickly invaded with my usual "what if " demon... what if she had cancer THEN and we didnt know, what if she was brushed by some unknown deadly bush on the way up what if we had only been fore warned. I had to stop myself and remember what i had learned this past weekend why we had spent a "mixed feeling " weekend in Harrison and i stopped myself , i had decided right there no more what ifs. Whatifs are as troubling or as futile even dangerous as trying to predict your future. I suppose its human nature to wonder "why" ...to question its purpsose and wonder who was in charge of all the happenings ,good and bad, in our life. The truth is i still dont have the answer i still cant say for certain and those much more annointed than i don't seem to have the answers either ... i could say" yes all this had purpose, it was his will to serve a bigger purpose " and i still can't say for certain that God has thrown his hands in the air and said " this is the world suffering the consequences of its actions...' i have an idea that maybe God didnt plan for any of this maybe it was an evil force that had to play itself out, the way of an imperfect world and maybe he is creating something " ok" from it. Either way he 's walking it with us sending those angels and helping us climb to new horizins as tough as they are.
Our weekend away as romantic as it may have sounded on a facebook status was not as lofty as it sounded ,we were actually attending a "parent of kids with cancer" retreat/workshop. As we wandered the hallways of the Harrison Hotel i had thought about all the times we had been here in the past , for an anniversary, or a getawy, or taking the kids to dinner , but never in my wildest imagination did i think we would find ourselves here under these circumstances, talk about your past and future coliding. I have no one word to describe the weekend , it was tough, fun, furstrating , healing , debilitating and a bunch more adjectives that flow out of my soul. It was comforting to be around people who have ./are going through the same stuff , however, even within this group there are still the have's and have not's, that is not to say that the have's are suffering any less , there are times i listen to my cohorts in the oncology world still fighting the fight and think "Oh God , i don't know if i could still be doing this" one parent described it as hanging on to a cliff waiting for the next gust of wind to throw them from their clutches , awaitng test results etc",then i ifnd myself saying " of course you would lori cause then you'd still have Ashley here" Some families are in the desired state of remission, however, now dealing with seconadary issues that in many ways are no better than cancer My heart went out to the parents that attended that were newly diagnosed , i dont think i would have wanted to know me now at the beginning of our journey. There were families there that have done amazing things with their grief , leaving legacies and setting up foundations etc it really does become your life's work in remberance of your child. The panel that spoke were surviviors, siblings and grandparents of kids with cancer , strong amazing group ,. I geuss the kicker came when a dr. spoke ( actually one that had treated ashley) he spoke about the importance of nutrition and the need for feeding tubes with most children having them implanted from the beginning. This hurt to hear, we struggled so much with trying to feed ashley and keep her weight up , she aspirated a feeding tube twice and refused them after that, i remember frantically looking through grocery stores checking labels for the highest, least invasive type of calories i could sneak into her food.
Darcy raised his hand form across the room (we were in sepaearte workshop groups) and as the microphone was passed to him i could feel my heart pound , i knew what he was going to ask , he was reading my thoughts and speaking words i couldn't formualte as i held back tears. He asked the inevitalbe ...what else could we have done? why couldnt she have the feeding tube put in while sedated which was earlier against hospital policy. ... the room got extremely silent and all i could here were sobs behind me from my table , the dr. paused and said as any good dr would " i can't speak to any specific case...." and then he looked at darcy and spoke right to our case and said you did everything you could have do not blame yourself...in that moment i said " no more what ifs" it took a little reeling and getting over the new philosphies at the hospital, ones we would have benefitted so greatly from, but perhaps this was the change maybe she and others are part of ....new solutions to new feeding challenges. We pulled ourselves together and met everyone at dinner ,we were seated next to the dr and not much more about it was said , he recognized who we were and recalled treating ashley and just spoke to us reassurigly , it was nice to talk to him on a personal level to ,see what makes these peopel tick ..lol. and to know that some of them aren't all medicine and non-alternantive.I ordered a veggie dish because he had drilled into me the importance of 7 ( yes 7) servings of veggies (all different colours) per day i was feeling obligated. Then he goes and orders steak...damn!
Anyways we ended the night like all the other good oncology parents closing down the lounge over some good red. im sure the other patrons in the lounge were envious of our stories and friendships ...not!!!!
Anyways proud to be in the company the most amazing parents i know. No more whatifs ( easier said than done)no more expecting i can plan my future to a "tee" and maybe not everything happens for a reason, that would be a hard thing to live with, BUT maybe reasons (to change, learn grow ,love,serve and thank) can come out of everything Am i looking forward to next year , well that is a loaded question.

Peace,
Lori

Filming Day.... March 2010

Filming Day
Wednesday, March 17, 2010 at 12:50pm | Edit Note | Delete
Sometimes i wonder what my expression would be if i had fallen asleep for 2 years and awoke to my present life,

I wonder what i would have thought to myself if i would have woken up on Monday morning with someone telling me that i had to be downtown Vancouver in hair and make up for a filming shoot, would i have thought " wow i finally made it to stardom" lol. I don't think i would have thought that our family had been asked to do a promotional video to recant the horrors of cancer with our eldest daughter, nevertheless, that is where we found ourselves this past Monday. Although we were treated like royalty and the kids gotta kick out of their rockstar status for the day there were no illusions of it being a fun day or an extra spring break day off, this would have been harder than any math or english class their cohorts would have partaken in that day.That being said Stefanny still wanted to go to her first class , Darcy picked her up shortly before we had to leave and away we were, each adorning our "Ashley" necklaces , rehearsing a few of the questions we might be asked ...side note ...there is no preparing for such a task, but we were there to help raise funds for a very meaningful cause, one so close to our hearts...Camp Goodtimes and the Canadian Cancer Society, a video to be shown at gala events and to donors.

Now we have been thrown into centre stage or a fishbowl , whatever you wanna call it , several times throughout this journey , interviews , radio shows , speeches , fundraisers etc and we are getting better at it but for a reformed "closed book" kinda person it is still somewhat nerve racking, but by the grace of God, we did it! The filming crew was respectful and thoughtful and afforded us every possible luxury while we waited each of our turns in the green room ( which is actually a red room but whatever)

There is something very reverant about watching your children on camera holding back tears and speaking from their heart about how "losing a sister " has affected them how watching her suffer and having a childhood and friends robbed right out from her was devestating for them , they were honest and real even telling the director about how they miss fighting with her , their fears and of course how Camp Goodtimes brought them to a place they so eloquently described as "home". Darcy and i were interviewed separarately and mine seemed to take forever , not sure if thats because they were doing all the set-up ..lighting and sound checks on me being ,the first to go, or because i fell off my chair , not once , but TWICE not because it was emotional and nooooo not because i had" tea time" before, it was simply because i am a clutz , im sure the sound guy thought i was a complete flake , why do those things always happen in front of the cute ones ...geez, anyways i was probably old enough to be his big sister (ok his mom... thought id never say that,,yikes!!!)I could tell the filming crew was nervous too , asking such personal questions so i m hoping my clutziness eased the tension for everyone . i'm sure their intention was to get brief accounts of the specifics of our journey but her first question to me was "can you describe your journey for us??" ...."WHAT???? what! do you want a mini series? ...cut!!!! ...could we be a little more specific, there is no beginning and no end to that answer "

Anyways by the time it was all said and done and as Dacry and i sat in the wings watching the kids each have their turn, i thought to myself " oh man i would so be one of those stage mothers , those ones i cant stand feeding their kids the actions and lines slightly offstage, oh well i guess somethings are instinctual and it was good for another laugh. By the end of the day the kids were having mini photo shoots done as a group still bickering and maintaing their version of sisterly love in every way , think they even caught a few shots of them bickering and shoving eachother off their stools. We had a family shot done and i felt a little strange , i think it waas our first formal family shot of 5, almost said "no" to it but knew Ashley was right in the centre of the picture, you just have to look a little harder to see it. There is nothing like watching your kids personalities really shine through on camera, so proud of them and Darcy and i too.

By the end of the day we had formed new relationships with these people and felt again like they maybe knew us more than people ( even family) we've known for 20 plus years , they thanked us through their own emotions and ...here;s' the kicker , they asked the girls if they'd be interested in any extra film work ..."are you kidding me, you just made their day, gotta be some perks in this whole thing for them don't ya think?" we were each given a gift and after tears and hugs the day was done,

I'm not sure how to describe the day, healing? draining? fun? emotional ? it was all that and more , but we did get to tell the world again about our amazing daughters fight and the bravery and strength of she and her sisters, so i hope this will pull at a few heart strings or should i say purse strings and keep research, and Camp Goodtimes rolling. Of course we did it for more than that and think we may continue , you never know who it will effect. Anyways we were exhausted by the end of the day , we took the kids out for dinner to celebrate and went home and slept for what felt like a month.

Yesterday was the 13 month anniversary of Ashleys passing and i just wanted to thank everyone for all their support at Ashleys memorial last month we got through the day with great friends , family and memories of Ashley who is with us in everything we do.

Peace,
Lori