ifts
Tuesday, February 3, 2009 at 10:56am | Edit Note | Delete
Well you should be getting the jist of our crazy unpredictable life by now, i probably don't have to tell you where we've been for the last two weeks or maybe i do , because you're used to me talking about childrens' hsosptial in realtion to Ashleys care.
This time was a litlle different, Yes, Ashley spiked a fever 2 weeks ago and when her counts are zero that means infection and a stint in the hospital for 2 weeks(do i sound like a broken record) this time, however, we were able to receive care at our new Abbotsford Hopital, although, it is a cancer centre as well, she was treated on the pedaitric ward in the regular hospital with regular kids who have regular problems like tonsilectomies and broken legs it was a slice of regularness. I can't tell you how different things felt.
First of all i have to give credit where credit is due. the doctors nurses etc. at childrens hospital oncology are probably some of the highest skilled people i have ever met in my life they are truly, medically, world class, we are blessed to have this hospital in our province so close, and if you're ever looking for a charity please consider it.
However, that being said if you're not being treated for strictly cancer stuff- Abbotsfrod pediatric care was a blessing , the nurses were amazing absoultely wrapped ashley up into their care and went out of their way...maybe nurses , anywhere are just amazing people ...angels sent form above. The moment we got there we were given a bright spacious room separate form the rest of the crying babies , they affectionately call this room "ashleys room" we were offered all the services that we would normally recieve at chlidrens ... social work, occupational therpaist ,child life the whole shibang, we were also able to direct ashleys care because these were not "oncology" nurses we were given opportunity to share our experiences and suggestions with the nurses/staff it was a feeling of control and understanding and mirrored back, i was astonished at what we've learned in a year it was an education i thought i would never reicieve or embrace but there it spilling out of my mouth like my first language ..its been a frightening immersion class. We were told by the nurse manger andPCC(???) that whatever we needed we would be afforded(hhmmm , thoughts came to my mind , but i'll leave that alone)I think it was probably a good experience for them too to learn new skills etc and no she was not treated like an experiment , i met a couple student nurses not quite ready for a practicum at childrens who hoped to be oncology nurses someday so i'm hoping they will recall ashley as their first prvilege at treating a child with cancer, because i think it is truly a privlege.These kids are front line heroes fighting tough battles that they don't always see purple hearts for. Some how i was truly at peace out here and although her secondary oncologist (out here) visited her almost daily i didnt seem to have the same fear of 4 or 5 oncologists walking into her room announcing "we need to have a parent meeting later" So i have to say that except for one little incident involving a silly boymanchild (a lori word) who thought he could scare me with his rude road behaviour, my 2 weeks were quite positive especially after i reassured him that i am a mother with a daughter figthing for her life, im not a girl who scares or is bullied easily i've faced tougher things than his skull rings and ugly mug...but i digress and am learning to let go of unneeded anger( work in progress)but sometimes the universe just provides nasty outlets.
We were visited by many of you who have been longing to visit Ashley but were unable to prior, Ashley had her youth group spend a fri night with her , family, friends pastors, freinds who work in the hospital and 2 of her nurses attend the same church, so we felt cared for medically and spiritually, we were able to run home to grab dinner, showers , kiss the other kids goodnight etc. the convenience was a blessing.
We are now home, regrouping- re-connectiong and following this spiritual journey where it takes us , sometimes its the hard road and sometimes its a euphoric road especially when you pay attention to the things that flow into your life, it is SO EASY to miss them, sometimes when i'm having a bad day or things aren't going the way i planned (should no better than to PLAN by now) the right person will enter into it .say something,send an email , new friends will come into my life with wisdom and faith,(Toni) quote a saying or a verse. offer me a book,a funny story, a poignant story , a subtle well timed suggestion, or a smile .or a hug, or a prayer,a dinner,silence... for whatever they're gift is it helps us to believe that we all have something to offer even if we think its nothing, i learned from someone this week that we all have God-given gifts and it is our responsibilty to share them to cultivate them not necassarily for our own satisfaction but also for how it might serve others, know you're gift! even if you dont think its a gift it can be turned into a gift if oyu share it! listen! , pay attention it will flow from you! exude from you into the world easily! and pay attention to the gifts people give you they were meant to be shared and accepted gratefully. I always wondered pre-diagnosis if one had to go through a big life-changing event to get to that place of gratitiude and sense of awe in God and Goodness and appreciating life in the now, i have to say that i may not have tuned in without this experience because through it i have met people who have taught me how to accept "what is" even when we wished it was something else, Thanks Jen for sharing your tough news. Thank you to everyone for sharing their gifts with us its what keeps us having faith.Thanks for reading,
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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