What is Faith , Hope and FairShare
Thursday, November 20, 2008 at 10:58am | Edit Note | Delete
I began this note from room 6 on 2B at Childrens hospital , i will likely finish it at home because our days right now are back to 48 hour shifts between darcy and i , needless to say we see eacthother for about 20 mins every second day, some of you may think this the ideal relationship, well the novelty has worn off, and the world goes round and round, and we are back to that feleing of never feeling like youre at the right place because your children are in two different places and they all need you at the same time, yes, i know what youre saying "our kids need us" yes they do, usuallly when we cannot be there, thats the unfair part about it. But they are generally always with at least one of us, which many families have to deal with in one form or another,. This week in hospital has been bitterweet , The Doc's have put Ashley on a an experimental new chemo regime, we are very thankful for the discovery and have a little re-newed hope, the wonderful part about it was that it was only to be a one day infusion two firdays in a row considered one round of chemo , this was to be done as an outpatient but our sensitive tummied little girl does not interact too well with any chemo and she has been quite sick, drehydrated and has lost weight so she is moving in to 2B for a bit. We have also recieved some quality advice/ products as a gift by a trusted friend who manufactures vitamins etc. we are not suggesting we have found a "moonbeams and spices" approach to cancer but we wil begin working on supporting Ashley's immune system,something the dr's admit is an area tthat they dont particularly concentrate on(unbelievable)!!!! We have also contacted an herblist through a trusted friend as well so we are feeling like we have some options and oh yeah !!!! faith!!!!!always faith!!some thing that strengthens and weakens like the wind.I have learned to pay attention to the things that flow easily into my life , listening to this and paying close still attention to these things are gifts that we need at a particular time, the trick is to be aware of it, the things/people that are right there in front of us are offering themselves...listen
As the one year mark approaches i look for renewed strenth i am acutley reminded daily of the little things that are leading up to the diagnosis anniversary , the haunting season that approaches us and how Chritmas is intermingled in there somewhere, we ponder how best to celebrate it t his year , one thing i know for sure is that if were all together no matter where, it will be enough. What about you? Whats imortant to you? What is unnecessary?
I dont think i will be sending out the obligiatory christmas cards this year however i will be sending you all my happiest Chritsmas thoughts, i will not be spending this precious time navigating nasty poeple in the mall for crappy "one more gift" ideas , i am not going to attend every xmas invitaion that i dont really want to be at anyways , i will not bake the xmas cookies that no one eats anyways... i may just buy them instead,perfection will not be anything to aspire to ...I will look forward to listening to choirs this year, really listening , I will think of the unfairness of the poeple stuck in the hospital for Chritmas , but there is unfairness everywhere, it is what i keep in mind everytime i wonder "why" i have to wonder how fair it was that little girls this week were burned with acid as they tried to go to school in Afghanistan, i have to wonder about the fairness of human trafficking , even in this country, in vancouver it exists. How fair is it that some kids don't have someone to tuck them in to bed everynight , there is nothing just about it,its relaizing that life aint fair its about accepting ( i dont even know how i can say this right now becasure im still on the path of it ) but i am reminded about acceptance as i meet people like Kims sister...Kim is a 14 year old year old girl who has cancer , her parents are chinese immigrants and they live on the island they are back and forth for treatment all the time. Kims sister is 18 she is kims caregiver while in the hospital, she feeds kim , she cleans up after Kim, she entertains kim,knows all kims meds and protocolsl, Kims parents run a restaurant on the island and work very hard to keep the family going, they are in the proccess of trying to sell their restaurant and move to vanocuver to be closer to the hospital. Kims sister was supposed to start at UBC this year , she told me she put it off for a year because taking care of Kim is more important and school can wait for this...and what is this girl going to UBC for? yep ...she is going to be a pediatric oncology pharmacist, talk about inspiring, talk about unselfishness and things that may seem unfair.Aren't sisters wonderful. I have watched alot of people go home from the hospital this week cancer free , my heart sings for them i am so happy for them they have travelled a long road , some of them started after us and some before it doesn't matter the desire to be in their world right now is undescribable and as i hug the moms i can feel the sigh of relief and empathy in their heart , we are so happy for them all , you give us re-newed hope.
Thank you everyone for all your support and extra comfort and your unique wonderful ways of walking beside us.
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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