Okay so I know there aren't very many reading of this blog out there anyway, and for those of you who are out there, you might want to skip this one, cuz it is just going to be a big ol fat pity party unedited... This is my blog and the whole reason I started it was for my own sanity, a place for me to journal and so you have been warned...
I am spent, done, I want out.. I didn't choose this - this life of medical chaos, humiliation, and grief and I want out... I have learned enough already to last my life time... I have desperately tried to stay positive and take all the blows that have come, but i AM human and can only handle so much... and when the scale tips a little too much at one moment - BAM !!! It all comes flooding over me - my emotions are a mess, all over the place..
I want God to stand in front of me, I want to physically feel his hug, I want to know beyond a shadow of a doubt that I AM NOT ALONE.... I want to SEE him stop the swoop me up from the enemy... I want to be protected....
Part of me is so confused as to why us... We tried to live good lives, we tried to be good people and we have not just been given a sentence we have been given a LIFE SENTENCE... It never ends, it never goes away, and it never will...
Money truly is the root of ALL evil... and we have tried desperately to get to where we can financially survive with Lane's disease... and we gave up everything, the new car, the nice new truck, my career... My pride.. my self esteem and self respect... EVERYTHING for this disease and we are trying to file bankruptcy in order to survive... Only that isnt free either..... and I dont say this lightly either because quite honestly it is humiliating... We still owe 2000 in order to file, and I know that eventually we will be able to get there but in the meantime we just need a little compassion and understanding... Most of the companies have worked with us and have been very kind as to not pursue us legally knowing that we are trying to file bankruptcy... Obviously if my husbands check is garnished then it puts off the filing even longer, not to mention we are choosing between food and prescriptions/co-pays at this point and there is just NOTHING left... For reals nothing.... But apparently a local (I live in a small small town of 7000) finance company just cant show any compassion at ALL.... over 1000 dollars they just have to proceed and served me the papers earlier today... and above all I don't have the heart to tell my husband.... He works so hard to try and support us through all of this and never really complains.... He doesn't deserve to be humiliated like that.... I couldnt help myself and I called the company, and had to vent a little telling her I hope she NEVER has to know what this life is like with a chronically sick child. Of course I should have never called because she was simply just COLD and that only makes me doubt humanity in general...I hope she never has to know what it is like to loose everything, to count change for prescriptions, I hope NO one does, no even me... but here I am..
oh man... Now we just spent the day at baptist yesterday for Lane's appts. and we were going over some options with a social worker and I was starting to see a light at he end of the tunnel... She was sharing with me some options with Social Security and Tefra ( all which I will share when I am sane) and I really started to feel better about the future and medical bills, Lane got some of his enzymes up'd in hope to help with stomach aches and of course he stayed home again today because of his stomach.... I was really handling it all with smile, and then in one second it just feels like the roof caves in... I know in the big picture that this is pretty trivial but it just so sucks being kicked while your down.... and now my face is just red and puffy, my head hurts and I am tired.... so very tired...
I am grateful though for the days on the beach, and a week in paradise, all the people with Make-a-Wish have no idea the break from reality that gave us all... No idea at all, and of course I am anxious to send them picture and such only yep you guessed it, gotta get some money first... I am just tired, really really tired and probably depressed..
I know God will carry me through this as well and I know that he loves me and will provide, but I would really like to offer him a suggestion.... It is called "Flat Burdens" kinda like "Flat Tax", you know all the burdens are EQUALLY distributed amongst all the humans cuz I really think I am being dealt way way more than my share, and besides when we suffer a little and go through things we learn compassion right, so then the cold lady at the finance company may not have been SO COLD....
Well all that venting and i am still not sure I feel any better, probably because I still have to tell my husband....
"Hope means to keep living amid desperation and to keep humming in the darkness" Henri J.M. Nouwen
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I am so sorry you are going thru this, my sweet friend. I wish there was something we could do to help, all I can do is offer up prayer. Please know that you and your family are in our daily prayers.
ReplyDelete(((Marcy))) I wish I could just give you a BIG hug right now. Its hard, I get it. We're a paycheck away from being in the same place. No one can understand what it takes emotionally let alone finanacially to be here, in our shoes. Im sorry that woman had NO compassion, awful of her. Watching my boy struggle is the hardest thing Ive ever had to do. I just have to believe GOD has a plan, a much bigger one as I cant make any sense of it otherwise. I try to keep my focus on Jack, remind myself of my blessings and pray everything else will fall in place. I wish I could find the right words. I know one thing, youre an amazing mom to one incredible little boy. You will get through this, I know Lane got his strength from someone, right??! One day at a time (not like you havent heard that before!) But thats really the only way I know how to do it these days. Praying for your family tonight, and always for Lane. Ive been loving all the pics from your trip, so many good memories for you all, HUGS, HUGS. HUGS-
ReplyDeleteHeidi & Jack.
Oh Marcy I wish I wasn't a million miles away so I could come and give you a well needed cuddle.
ReplyDeleteI cant begin to imagine what you are going through as we are so blessed here in England with free medical care (although we do pay taxes etc). I cant believe in this day and age that you guys are been forced into this position through absolutely no fault of your own. I am really mad for you. The way you have been treated, the way you have been spoken to and what it is doing to you all.
I read this last night but I was actually too upset to respond at the time. I know I have only known you a short while but I already know how much of an amazing family you are and know that through your combined strength when you unite, you can beat your way through this somehow.
I cant offer any words of advice but you have my support, my thoughts and know that if you need to vent, contact me anytime if it will help.
Thinking of you all, you guys are one tough team.
xxx
Sending a huge hug your way! We too filed bankruptcy a few years ago - i remember the coldhearted collectors, being broker than broke, always worried about the next copay, and trying not to cry in front of my son...it was SOOOOO hard. But, there IS light at the end of the tunnel - I know it doesn't seem like it at times, but you WILL get there. And, if Lane can get qualified for social security or your state program things will be even better. FYI - We had to apply more than once (was actually told that they always turn down first time applicants to weed out people who don't really need it, because those who do will ultimately appeal and try again).
ReplyDeleteAs for your husband - it was hard for mine as well, but now looking back on those days, I'm the one who really remembers how bad it was, he has "selective" memory lol.
Anyway - from one CF mommy to another - I'm praying for you guys <3