So...thanks to a metric ton of support from mrs me and some painfully open and honest and painful discussions with a dear lifelong friend...I have created an online group of my own called...the what NOT group or what NOT to say to grieving parents...membership fluctuates but remains over 100 strong after a rocky startup week or 2 in August...the overall concept is to bring people ("US and THEM") together in a place where the grieving parent can say EXACTLY what's on his or her mind without fear of retribution or coming under a religious onslaught of those closest to us...who are "trying to help" but NOT really...
the only real prerequisite is that religion and god-talk are not allowed as we ALL believe something DIFFERENT...sort of similar to the rules of an A.A. meeting...say what you want how you want but keep your organized religious beliefs out of the discussions...
this allows a safe haven for the grieving parent and a learning place for the friend or family member wanting to learn how to be a better help for the one who grieves...as their words go no further than the group page itself...
I must say, it has already been an amazing journey to see how many people, myself included, are realizing how much WE are NOT alone...in the last 5 years I have questioned my own sanity from time to time (more often than ever before to be honest) and especially lately...thoughts just flying everywhere and some are "profound"...I hate knowing I am losing them long before I can pull myself together enough to write it down for future reference...yes even a simple thing as reaching for pen and paper or iphone and notes page, as our technology now provides...to more fully understand my struggle...the damn phone is in my HAND and I can't focus long enough to suggest to myself to use it as a notepad !...
what I read from other's posts these days is not just the pain of being parent to A DEAD KID...but the frustration with "friends" and family that talk without thinking no matter what we say or do...some of US ARE outspoken enough to say "I don't like the way you treat me and my grief for my dead child" or "I don't like the fact that the only way you can "deal/handle being with me is by either ignoring me or ignoring the FACT that my child LIVED and DIED and IS a PART OF THIS "FAMILY"AND MY LIFE TODAY...
it's one thing to be in a workplace and have people NOT have it ever present in their minds that WE are nearby and our child is still DEAD and WE might have FEELINGS about it that are sad or angry...but...WE DON'T WANT TO BE KNOWN AS THE SAD ANGRY PARENT WHOSE KID IS DEAD AND "THEY NEVER GOT OVER IT"...I still maintain that "we" as a society have got an awful lot to LEARN and a LONG way to go BEFORE grieving parents can even START to be UNDERSTOOD...
WE are expected to remain SILENT about OUR REALITY...which is EVERY SINGLE DAY something is going to remind of that our child is dead and NOT here or a phone call away to share the newest latest happy/sad news/events that touch our lives...WE are expected to attend WITH A SMILE AND HAPPY FACE PLASTERED IN PLACE THE ENTIRE TIME...weddings/baby showers/christenings birthdays (of any age really) and PERFORM as though...
WE remain UNTOUCHED so we can "ALL HAVE A GOOD TIME AND NOT BRING ANYONE OR THE EVENT "DOWN"...
yet, these are the SAME people who in private, say things like "I don't know how you do it, if it were MY child that DIED I'd kill myself." or "I'd go crazy and have to be locked away for the rest of MY life because I couldn't "handle it." ...
REALLY?! I SHOULD FEEL HOW, WHEN YOU SAY THAT EXACTLY? LIKE A LOUSY PARENT BECAUSE I DIDN'T KILL MYSELF OR GO CRAZY ENOUGH TO BE INSTITUTIONALIZED?...YET...THAT I DON'T/ DIDN'T LOVE JASON ENOUGH BECAUSE I'M STILL HERE UPRIGHT AND TALKING SOMEWHAT COHERENTLY A GOOD DEAL OF THE TIME?....
or are YOU gonna give me that old line of WHAT I CONSIDER TO BE BULLSHIT "god has a plan and you don't need to know what it is right now, because that's one of his mysteries?...WHAT'S A MYSTERY TO ME IS HOW YOU CAN STILL BELIEVE IN THIS INVISIBLE MAN THAT APPEARS ONLY WHEN HE FEELS LIKE IT AND DOES WHAT HE DOES TO US, WITH NO RHYME OR REASON AND DOESN'T FEEL THE NEED TO EXPLAIN BECAUSE WHEN WE ARE DEAD WE WILL KNOW AND BE GRATEFUL...HOW THE FUCK DOES ANYONE KNOW THIS WITH SUCH CERTAINTY?!...DON'T GIVE ME THAT BLIND FAITH CRAP EITHER...I SEE IT AS BEING JUST BLIND...
JASON IS DEAD FOR NO REASON...SO TOO, IS HIS FRIEND CHRIS... DEAD FOR NO REASON OTHER THAN A "FRIEND" WHO IS AN ASSHOLE AND WAS DRIVING WAY TOO FAST...I'M NOT GONNA "FEEL BETTER" WHEN I GET "THERE AND "HE TELLS ME HIS REASON" FOR KILLING MY SON !...HE'S AN ASSHOLE TOO IF HE EXISTS...
NOT sorry for NOT believing...NOT sorry for NOT caring so much about the mundane/ everyday/ day to day BULLSHIT YOU THINK is important...
at work it's how many paper towel dispensers are empty in a room with 5 of them...or how "dirty" looking a WORKING GARAGE looks...you'd be surprised what some people consider "a mess" in a GARAGE...I work for FDNY/EMS in NY...the place I work is where the emergency vehicles (ambulances mostly) are repaired and maintained...I clean the bathrooms and offices and some parts of the garage...
I have been doing this job for 22 years...
I know it's difficult to believe...but I have yet to have a bathroom or office floor complain about the how and when I clean them...but the people who use them sure have some funny ideas as to how I should hang a roll of toilet paper or that I should be made aware that on the weekend a SINGLE paper towel dispenser managed to run out while I was on my regular days off...and just so you KNOW there is no "right time to clean a bathroom...these are the hardships others have to endure and yet...
they manage without going crazy or killing themselves...
I DON'T KNOW HOW THEY DO IT !!!...PRETTY STUPID HUH?
WORK ISN'T THE ONLY PLACE WE RUN INTO THIS LEVEL OF STUPID...FAMILY CARRIES IT'S SHARE...
Jason was born on my brother-in-law (Tony's)birthday April 14, 1984...
Jason was killed in a car crash on May 26, 2006..
April 14, 2007 my family had a party for Tony's 60th birthday
Michelle and I felt we should at least stop in say happy birthday to Tony and leave quickly...it was Jason's first
birthday being...DEAD...
trying to exit without explanation a cousin who "couldn't" come to Jason's wake or funeral because she couldn't "handle it" asks loud enough for both rooms full of people eating cake "WHY ARE YOU LEAVING !?"..."BECAUSE WE ARE GOING TO "CELEBRATE" JASON'S BIRTHDAY...QUIETLY ALONE AT HOME."...."oh."...
YEAH "OH"....that was the second time Jason was realized as an afterthought...the first was at christmas at my mother's when we (mom michelle and me) decided there should be an extra place setting for Jason and my dad as they both died within 67 days of each other and this was our first christmas without them both..."why the extra plate? put this away we don't need it." "yes, WE do."..."no we...oh."...
WE REMAIN SILENT AS ONE AFTER ANOTHER INSULT/HURT/THOUGHTLESSNESS ARE PILED UPON US SEEMINGLY DAILY BY THOSE CLOSEST TO US...THEY DON'T APOLOGIZE FOR NOT BEING MORE INSENSITIVE OR UNDERSTANDING OF WHO WE NOW ARE...I DON'T SEE THE NEED TO APOLOGIZE FOR FORGETTING TO INCLUDE THEM IN MY LIFE MORE AND MORE WITH THE PASSAGE OF TIME...
I /WE DON'T WANT SYMPATHY OR PITY...
I/WE WANT MORE COMPASSION AND THINKING BEFORE YOU ADD MORE HURT TO THE ALREADY EMOTIONALLY AND MENTALLY DEVASTED...
IT'S NOT A PITY PARTY IT'S OUR "NEW NORMAL"
YOU DON'T REALLY THINK ABOUT IT ALL THE TIME
WE DON'T HAVE A CHOICE...BECAUSE THERE IS NO SWITCH TO TURN IT OFF AND MAKE US BETTER...
the only real prerequisite is that religion and god-talk are not allowed as we ALL believe something DIFFERENT...sort of similar to the rules of an A.A. meeting...say what you want how you want but keep your organized religious beliefs out of the discussions...
this allows a safe haven for the grieving parent and a learning place for the friend or family member wanting to learn how to be a better help for the one who grieves...as their words go no further than the group page itself...
I must say, it has already been an amazing journey to see how many people, myself included, are realizing how much WE are NOT alone...in the last 5 years I have questioned my own sanity from time to time (more often than ever before to be honest) and especially lately...thoughts just flying everywhere and some are "profound"...I hate knowing I am losing them long before I can pull myself together enough to write it down for future reference...yes even a simple thing as reaching for pen and paper or iphone and notes page, as our technology now provides...to more fully understand my struggle...the damn phone is in my HAND and I can't focus long enough to suggest to myself to use it as a notepad !...
what I read from other's posts these days is not just the pain of being parent to A DEAD KID...but the frustration with "friends" and family that talk without thinking no matter what we say or do...some of US ARE outspoken enough to say "I don't like the way you treat me and my grief for my dead child" or "I don't like the fact that the only way you can "deal/handle being with me is by either ignoring me or ignoring the FACT that my child LIVED and DIED and IS a PART OF THIS "FAMILY"AND MY LIFE TODAY...
it's one thing to be in a workplace and have people NOT have it ever present in their minds that WE are nearby and our child is still DEAD and WE might have FEELINGS about it that are sad or angry...but...WE DON'T WANT TO BE KNOWN AS THE SAD ANGRY PARENT WHOSE KID IS DEAD AND "THEY NEVER GOT OVER IT"...I still maintain that "we" as a society have got an awful lot to LEARN and a LONG way to go BEFORE grieving parents can even START to be UNDERSTOOD...
WE are expected to remain SILENT about OUR REALITY...which is EVERY SINGLE DAY something is going to remind of that our child is dead and NOT here or a phone call away to share the newest latest happy/sad news/events that touch our lives...WE are expected to attend WITH A SMILE AND HAPPY FACE PLASTERED IN PLACE THE ENTIRE TIME...weddings/baby showers/christenings birthdays (of any age really) and PERFORM as though...
WE remain UNTOUCHED so we can "ALL HAVE A GOOD TIME AND NOT BRING ANYONE OR THE EVENT "DOWN"...
yet, these are the SAME people who in private, say things like "I don't know how you do it, if it were MY child that DIED I'd kill myself." or "I'd go crazy and have to be locked away for the rest of MY life because I couldn't "handle it." ...
REALLY?! I SHOULD FEEL HOW, WHEN YOU SAY THAT EXACTLY? LIKE A LOUSY PARENT BECAUSE I DIDN'T KILL MYSELF OR GO CRAZY ENOUGH TO BE INSTITUTIONALIZED?...YET...THAT I DON'T/ DIDN'T LOVE JASON ENOUGH BECAUSE I'M STILL HERE UPRIGHT AND TALKING SOMEWHAT COHERENTLY A GOOD DEAL OF THE TIME?....
or are YOU gonna give me that old line of WHAT I CONSIDER TO BE BULLSHIT "god has a plan and you don't need to know what it is right now, because that's one of his mysteries?...WHAT'S A MYSTERY TO ME IS HOW YOU CAN STILL BELIEVE IN THIS INVISIBLE MAN THAT APPEARS ONLY WHEN HE FEELS LIKE IT AND DOES WHAT HE DOES TO US, WITH NO RHYME OR REASON AND DOESN'T FEEL THE NEED TO EXPLAIN BECAUSE WHEN WE ARE DEAD WE WILL KNOW AND BE GRATEFUL...HOW THE FUCK DOES ANYONE KNOW THIS WITH SUCH CERTAINTY?!...DON'T GIVE ME THAT BLIND FAITH CRAP EITHER...I SEE IT AS BEING JUST BLIND...
JASON IS DEAD FOR NO REASON...SO TOO, IS HIS FRIEND CHRIS... DEAD FOR NO REASON OTHER THAN A "FRIEND" WHO IS AN ASSHOLE AND WAS DRIVING WAY TOO FAST...I'M NOT GONNA "FEEL BETTER" WHEN I GET "THERE AND "HE TELLS ME HIS REASON" FOR KILLING MY SON !...HE'S AN ASSHOLE TOO IF HE EXISTS...
NOT sorry for NOT believing...NOT sorry for NOT caring so much about the mundane/ everyday/ day to day BULLSHIT YOU THINK is important...
at work it's how many paper towel dispensers are empty in a room with 5 of them...or how "dirty" looking a WORKING GARAGE looks...you'd be surprised what some people consider "a mess" in a GARAGE...I work for FDNY/EMS in NY...the place I work is where the emergency vehicles (ambulances mostly) are repaired and maintained...I clean the bathrooms and offices and some parts of the garage...
I have been doing this job for 22 years...
I know it's difficult to believe...but I have yet to have a bathroom or office floor complain about the how and when I clean them...but the people who use them sure have some funny ideas as to how I should hang a roll of toilet paper or that I should be made aware that on the weekend a SINGLE paper towel dispenser managed to run out while I was on my regular days off...and just so you KNOW there is no "right time to clean a bathroom...these are the hardships others have to endure and yet...
they manage without going crazy or killing themselves...
I DON'T KNOW HOW THEY DO IT !!!...PRETTY STUPID HUH?
WORK ISN'T THE ONLY PLACE WE RUN INTO THIS LEVEL OF STUPID...FAMILY CARRIES IT'S SHARE...
Jason was born on my brother-in-law (Tony's)birthday April 14, 1984...
Jason was killed in a car crash on May 26, 2006..
April 14, 2007 my family had a party for Tony's 60th birthday
Michelle and I felt we should at least stop in say happy birthday to Tony and leave quickly...it was Jason's first
birthday being...DEAD...
trying to exit without explanation a cousin who "couldn't" come to Jason's wake or funeral because she couldn't "handle it" asks loud enough for both rooms full of people eating cake "WHY ARE YOU LEAVING !?"..."BECAUSE WE ARE GOING TO "CELEBRATE" JASON'S BIRTHDAY...QUIETLY ALONE AT HOME."...."oh."...
YEAH "OH"....that was the second time Jason was realized as an afterthought...the first was at christmas at my mother's when we (mom michelle and me) decided there should be an extra place setting for Jason and my dad as they both died within 67 days of each other and this was our first christmas without them both..."why the extra plate? put this away we don't need it." "yes, WE do."..."no we...oh."...
WE REMAIN SILENT AS ONE AFTER ANOTHER INSULT/HURT/THOUGHTLESSNESS ARE PILED UPON US SEEMINGLY DAILY BY THOSE CLOSEST TO US...THEY DON'T APOLOGIZE FOR NOT BEING MORE INSENSITIVE OR UNDERSTANDING OF WHO WE NOW ARE...I DON'T SEE THE NEED TO APOLOGIZE FOR FORGETTING TO INCLUDE THEM IN MY LIFE MORE AND MORE WITH THE PASSAGE OF TIME...
I /WE DON'T WANT SYMPATHY OR PITY...
I/WE WANT MORE COMPASSION AND THINKING BEFORE YOU ADD MORE HURT TO THE ALREADY EMOTIONALLY AND MENTALLY DEVASTED...
IT'S NOT A PITY PARTY IT'S OUR "NEW NORMAL"
YOU DON'T REALLY THINK ABOUT IT ALL THE TIME
WE DON'T HAVE A CHOICE...BECAUSE THERE IS NO SWITCH TO TURN IT OFF AND MAKE US BETTER...
Thank you, thank you, thank you. I wish that I could magically disappear every time someone tells me that Gene is in a better place. The best place for him to be is with me, not DEAD!!!
ReplyDeleteyou are more than welcome...anonymous or not...my heart is with you...
ReplyDelete