Wednesday, September 11, 2013

Can Things Get Any Worse... Yes Apparently They Can!

 
 
The day started out with me being called into the Principal's Office for Prince R.  She's a New Principal at the School so it was our first Meeting, the first of probably many, since I've gotten to know every Principal quite well since he has been in School.  She's very nice, that always helps... and the conversation always begins with what a Delightful Personality he has and how very Intelligent he is... BUT... the 'Buts' are always why we're Meeting... he really sucks at this Educational Process Thing... yeah, we know.  And how do we Engage him so that his Work gets done... yeah, I don't know, that's still one of the Great Mysteries of Life nobody has yet to figure out.  Since he's on Planet R and we're here on Earth so there's this Intergalactic Planetary Gap we're trying to breach constantly.
 
 
 
 
And then there was the Issue of why he cannot serve out the long string of After School Detentions he has almost every day of the week already without some interruptions?  Well... because of the long string of Doctor, Surgeon and Therapist Appointments he and his little Sister have cluttering up my Calendar after School, of coarse.   Oh, and The Man still being in the Trauma Center a long drive into the City too, where I try to be whenever I can squeeze in a long commute and some precious 'Free' Time, hopefully without an entourage of Kiddos since they can't handle Grandpa's condition real well.  So, we'll have to re-schedule a few detentions shall we?  Because though their Educational Process is Important, so is their Physical, Mental Health and Well-being getting accommodated.  And since we've waited Months for some of these Specialist Appointments, we can't afford to miss any of them, lest we have to start over from scratch dealing with 'The System'!
 



Ah, yes, 'The System'... and what a Beast that is lemme tell ya!!!  Because just when you think things can't get any worse with 'The System', yes, apparently they can!!!  And they did... AGAIN!  Because after the Morning Principal's Meeting... we had another Meeting clear across the City at County Hospital for Princess T's Pre-Surgical Appointment and Consent.  Which is one Meeting we'd waited over six Months to line up to this point in Time with a Surgeon, since it's a convoluted Process to get all the Approvals and see a half dozen interim Docs Blessing the Procedure that her Pulmonologist already Approved eons ago... to where she can finally have the tumor in her throat removed now... or can we?   Apparently we can't... and here's the catch...
 
 




We see the Surgeon, she concurs that the condition warrants an IMMEDIATE Surgery and that the Sleep Study revealed numerous 'Abnormalities' we Hope this Procedure will correct... including that the Kid and I might FINALLY actually get a full Night's Sleep in our Lives without the severe Sleep Apnea she suffers from several times each Night.  But when it came time to have Gramma sign the Consent Forms for an October 9th Surgery... oh, wait... you're Gramma, we need MOM'S Consent!  REALLY... are we gonna have this Conversation AGAIN?!?  Yes, yes we apparently are, even though I've been the Guardian since Birth and the present Paperwork has been sufficient all these years, Eight and Thirteen years to be exact for each Kiddo... well, until quite recently that is... in the past week all of a sudden!!!  And since we don't have a Clue where Mom is except Homeless somewhere in Mexico... and she's been off the grid again for Months so we haven't had any contact... and can't give Legally Binding Consent anyway that both Countries won't apparently have some Issues with, what are we now to do... 'cause this is all I got folks?!?
 


 
 
And so we cancel the IMMEDIATE Surgery that is so 'Necessary' and 'Urgent', but we keep getting the runaround about... and they call in the Social Worker... like I need another one of them like a hole in my head.  And she gives me a number of another Agency, that is difficult to reach and Schedule with mind you {Naturally}, but keep trying every day 'til you can get thru and get results... of a Guardianship Workshop being held by the Superior Court's Family Court that you should sign up for.  And that would be a good place to START... taking this Workshop Class clear Downtown, which has a long Waiting List {of coarse it does}, and you can't bring Kiddos with you to.  And THEN... you'll still have to go through 'The System' Legally to get Permanent Custody from a Judge some kind of way that everybody is happy with and you can afford {Good Luck with that by the way}... since apparently raising the Kiddos from Birth and having three different Legal Docs the Mom already voluntarily signed off on over the years... and arranging every Medical Special Need to date hasn't been quite enough apparently... all of a sudden... in the past week.  *Le Sigh*  And whenever you manage to get all THAT done... we'll revisit and re-schedule this Surgery Thing... you know, for the tumor in her throat that we don't even know is benign or not?!
 
 
 
 
And the Real Irony is that I'm so fed up and Tired that I don't really want to even do this full time unpaid Guardian Caregiver gig anymore, especially if everyone is going to run resistance against me and I've got to do it alone with absolutely no Help.  But who else have they got?  So I don't have any choice but to continue... and just deal with the added layers of Stress being put on me about getting them all of the Assistance that will meet them at their Point of Need in the Role I've been given by my Daughter as their Custodial Guardian.  Involuntarily I might add since 'The System' wouldn't allow her to Raise them either, so she had no choice but to give them up at Birth.  And place them with the greatest of Love where she knew they wouldn't meet with some of the horror stories so many unsuitable Stranger Placements end up, in the very broken 'System' that is our State's Foster Care.  But instead with her own Parents, who Raised her with Love and have experience with Special Needs Children. So that she, and we, could have a Peace about relinquishing them on her own terms to Family, without complete Strangers making those important decisions.  Who knows what a complete Stranger might decide after all, we don't know them and their Investment with these precious Children isn't Personal.
 


 
 
And I get so Angry that 'The System' won't just let us continue to do our Job... since we're obviously doing a Good Job so I don't really see why they have to burden us with more bureaucracy and red tape at every turn?  It's frustrating... and disheartening for Custodial Grandparents... we're Old and Tired enough as it is raising a Generation we didn't expect to be raising and found ourselves asked to.   And we don't get even a smidgen of the Help and Assistance that they'd give a complete Stranger in the Role, probably with little or no interference being run to make the Job just that much harder than it already is.  Believe me, it would be so much easier to just hand them over and make 'The System' find suitable alternative Placement {if we Believed they even could} and shoulder the burden of 100% of their needs, care and expenses until Adulthood.  And just be regular Grandparents.  That would be the easy and sometimes Tempting Route to take, especially when dealing with all the bullshit.  But that wouldn't be in the best interest of the Children... and that is MY primary ultimate Goal... their best interest and well being... even if 'The System' doesn't really give a damn... and sadly, it shows and should be publicly Revealed for the Disgrace that it is and the Bureaucratic beheamoth it has become.
 

 
 
But this is why we do it, shining little precious Spirits... and Edure the Humility and frustration 'The System' puts us thru constantly.  Regardless that they know full well that they're in the best Placement they could be... because they're Priceless and so very worth it to us Grandparents.  And I truly Believe that the System realizes that and has found a way to hold our Love against us to withhold as many Services as they can possibly get away with... and that's bad Karma that I can't help but Hope comes back around to and catches up with whoever makes these absurd decisions that jeapordize the Health and Well Being of the Innocents and their unpaid devoted Family Caregivers.
 
  
Sign me off today as a very Overwhelmed and Pissed Off Custodial Gramma Dawn... The Bohemian
 

9 comments:

  1. Healthcare as it involves The System is a sizzling topic here in the Midwest. Your story of family love vs bureaucratic resistance is not, alas, uncommon as the doling out of services becomes 'strict rationing.'

    Yes, of course there are families that milk The System, but...Grandparents struggling to care for themselves?! Grandparents who have made every effort possible to obey the rules and write neatly in the boxes on the forms?!

    Have you a Congressman or Senator who could intervene on your behalf? There are other grandmothers throughout the country who are also struggling but lack your poise and ability to communicate: speak for them.

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    1. Since I cannot respond to a Blog Beth I want to Thank You here for your input and care. Believe me, I plan to call in all the Favors I can to get this resolved and have a Voice that will be heard. If this tumor is not benign I am fearful that all this delay will put my Precious Grand-Daughter at greater risk, and greater suffering, than she's already been Enduring... or that we might not get the Surgery done at all to have it removed and even find out it's nature and Appease the System!?! I'm gravely concerned at this point and feel as though it's always 'something' to delay or deny Services lately, so even if I manage to resolve the current requests, what other requirements will they then dream up next?

      Dawn... The Bohemian

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  2. Oh Dawn.....I truly believe KARMA HAPPENS!! Just sit back and watch. I HOPE this all gets straightened out with you and our health care system. My daughter is in ACHHS and I know it is a nightmare. BTW......new health care has been in the news greatly as of late.....is there any way this could help you in your situation. Just wonderin,.

    xo

    Jo

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  3. I'm so sorry you are mired in this disfunction. I can't imagine your situation and so won't pretend to do so with hollow suggestions. All I can do is offer my sincere thoughts and prayers for your family... Continued strength to rise above and infinite love to see you through.
    Take very good care.
    Always, Queenie

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  4. Unbelievable! I'm praying for you and yours right now, since that's all I know to do and I know it does make a difference
    !

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  5. The situation is terrible. Why not legally adopt the kiddos?

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  6. kids(:)
    yes I had to go to the schools often with one of my sons (:) ugh

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  7. Oh Dawn, I'm so sorry you have to go through this, but those beautiful faces tell me that you are doing the right thing. The world will have two good decent human beings because of you and that is worth everything.

    Hang in there,
    Judy

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  8. Greetings Dawn,
    I am new to your blog, but felt an instant kinship once I saw you with the the creepy doll heads and Hallowe'en goodies in your recent posts. I read back through your posts and was so struck by your words and the beautiful faces of the gorgeous royalty that resides with you. Your struggle sounds immense. I am in awe of your strength and resilience during this time of chaos. I wish you all the best in the coming days and months. I'll be rooting for you and the kiddos!
    Hugs,
    Glo

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