March 24, 2012

JUST KEEP SWIMMING...

if you saw the movie 'finding nemo' than you are familiar with the title of this post.





finding nemo
just keep swimming scene


having to just keep swimming in the midst of turbulent, stormy seas is currently the status quo in our life. we must just keep swimming thru murky, shark infested seas with no land in sight and no help on the horizon. i am so tired, so depleted, so terrified - if only i had a life vest, a bouy and a carribean sea to swim in.


we just have to keep swimming in regards to our fight for the right to treat our son. on second thought, it would be more accurate to assess our position as treading water as swimming infers forward movement - and little, if any of that, is happening. no, we are primarily treading dark waters, desperate to be rescued from a situation that has us in way over our heads. i still feel like i need to be a bit cryptic here on my blog in regards to relaying information about our situation. 




i am imploring you for your continued and earnest prayers in regards to this situation. it is ongoing. it is taking a terrible toll on our emotional well being, on our son's health and on my health. last week, i started barfing again. it's most definitely not the flu. it does not appear to be a re-occurrence of the fluid on the brain  that i suffered from in august/september 2011. i am still on medication to control that. this barfing is more in-keeping with and following the same pattern and MO as the atypical seizures i developed back in november 2010 due to the co-infection bartonella. my doctors suspect that the enormous level of stress coupled with an increasing lack of ability to sleep have proved too challenging for my body to keep my bartonella in check. i have thrown up every evening and every supper for the past 10 days. 


i am exhausted. i am overwhelmed. i have reached my breaking point. for several days, the tears have just come out of nowhere. huge, body wracking sobs. i just can't do this any more. it is just all too much to bear. way too much. our life over the past 6 years has been relentlessly difficult and a down right nightmare. that, in and of itself, had already stretched me well beyond my capacity and then "the attack" by the hospital and its doctors happened and we are drowning in the aftermath of that. correspondence from them continues to come in on a near weekly basis...and most of it is greatly disturbing and incredibly upsetting to us. 


and i am so done. i am exhausted. i feel helpless. i feel powerless. i am appalled by what has and is transpiring. we all are. my son crawled into bed with me the other nite. with tears streaming down his face, he whispered, 


"how do they live with themselves, mom? how can they sleep at night?"


my son has endured more suffering in his young life than most folks will encounter in their lifetime. yet, he is a remarkably resilient kid. he is strong and centered despite the degradation he has been subjected to by the doctors at that hospital. he has been brave and courageous despite the myriad of patronizing comments made to him and at times, even hostile attitudes aimed at him. we've worked hard and he has worked hard to overcome the hurt and neglect and to just keep swimming. over the past 2.5 years, we chose to focus on what we (he) did/does have - we have DR H, DR D and DR A. and despite the lack of treatment in our home country, our son was getting treated (in the USA) and he was getting better as a result. at the end of the day, regardless of where that care came from, him getting better is what really matters. focusing on that, enabled us to keep swimming through the labyrinth of fighting a complex disease. we were comforted by the knowledge that our son had (USA) doctors who truly cared about his mental, emotional and physical well being. we are grateful we had doctors who know how and were skilled and experienced in treating this horrendous disease. 


the bottom line was that his USA treatment had him on the road to recovery. and now all of that has been aggressively attacked by a canadian hospital and its doctors. an institution and medical professionals that have repeatedly told our son that they do not want to be involved in his case, have interfered with his (usa) treatment and in doing so, have jeopardized his health and life. and we have to help our son reconcile THAT stark, horrid reality. not all doctors are good, safe or do the right thing. in fact, some will perpetuate a child's suffering (his, in this case) in order to serve their own selfish interests. few folks can even conceive of that as fact, let alone believe it. yet, it is our reality. it is our son's reality. and i have to help a 12 year old swim through the dark depth of this side of humanity whilst he suffers the pain filled consequences of the actions of health professionals that are antagonistic to that which is aiding his recovery. 


 i feel so alone. so very alone. we have joined a club that few people will (mercifully) ever experience - the dark side of medicine. a place where ego, arrogance, and selfish interests trump the oath to do no harm, provide compassionate care and the outcome results in the indescribable suffering of a child. make no mistake, there is a very, very dark underbelly at play here and we are swimming in the shadow of it. what is occurring is a deliberate manipulation of the facts and a suppression of relevant information and it is shockingly unconscionable and irrevocably vile.


we are swimming upstream against a torrent of rubbish and an undertow of lies that threaten to pull us under and all the while their slick and powerful sharks ominously circle overhead with unlimited resources at their disposal. and i am only a mother, one small, floundering fish, trying to protect my very ill child whilst fighting to get him the appropriate and necessary medical care he needs to recover from a disease that has robbed him of 3 years of his childhood. a disease, that prior to treatment, had ravaged his body to such a degree, that at his worst, he was unable to feed himself, walk, read or write. and now canadian medical professionals have put lock, stock and barrel on access to the very medicine that has given him back his quality of life - it is shameful and what is criminal is that in the process, they shredded his sense of security.


i am angry. so very angry. it is hard to believe that justice will be served. that is a tough pill to swallow. of course, we would like to see the doctor's involved in launching this attack held accountable for the misconduct appropriated against our family, but that is secondary to ensuring our son's physical and mental health. we are incredibly grateful that DR H continues to stand solidly behind his diagnosis and treatment of our son. since "it" all happened, DR H has strongly advocated for our son, his patient, with direct correspondence to those involved in the interference of his prescribed treatment. yet those attempts have gone unanswered.


for the time being, i feel totally despondent and completely isolated. i feel angry. sad. frustrated. overwhelmed. terrified.  i am lacking in my generally natural inclination to find the silver lining. i wonder what God is up to...how does this fit into the bigger picture? i know he is just and righteous... i just don't understand why he is not righting this wrong. i know he loves us, i know he cares about our son's suffering...i just don't understand why he's not lifting it.


maybe tomorrow will be better...albeit, i find that hard to believe. in the meantime, i must somehow find the strength to just keep swimming even though i am drowning in a sea of tears and grief.



4 comments:

mnotaro@comcast.net said...

I just found your blog and am a new Lymie myself. I suffer but I know the suffering would be unbearable if I had to watch my children battle this disease. I pray for your family and you have touched my heart with this post. My heart breaks for you.

lymebegone said...

As always- I sit and read your blog with disbelief, anger, sadness and hope- yes, hope. Countless times your experiences have served as hope for us- another lyme family suffering the injustices of a medical system gone very seriously wrong- so wrong.I can only pray and hope that there is something bigger at play and we will not only see our children's lives retored- but also justice done in someway. We love you all and stand in solidarity with you through this whole awful ordeal- that is really beyond description. For Parker and Riley we greet each day and choose hope rather than despair....and when one of us has no fight left inside to do that- then we carry that person through the stormy waters til they can hope again. Keep swimming wonderful Goertzen family.

lymebegone said...

As always- I sit and read your blog with disbelief, anger, sadness and hope- yes, hope. Countless times your experiences have served as hope for us- another lyme family suffering the injustices of a medical system gone very seriously wrong- so wrong.I can only pray and hope that there is something bigger at play and we will not only see our children's lives retored- but also justice done in someway. We love you all and stand in solidarity with you through this whole awful ordeal- that is really beyond description. For Parker and Riley we greet each day and choose hope rather than despair....and when one of us has no fight left inside to do that- then we carry that person through the stormy waters til they can hope again. Keep swimming wonderful Goertzen family.

Kathy said...

<3 Shannon. Keeping you in my heart and prayers.