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
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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