Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.
They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.
They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?"
They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.
They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm.
They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.
They are struggling to keep a marriage together, because adversity does not always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive!
(Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.Sue passed away in October 2003. Michelle passed away a week before she as to turn 18 in September 2005.)
12 comments:
I saw this on the IS board earlier this week...almost re-posted it myself! Definitely something people should read!
I agree! It's really good stuff. And I'm having issues thinking...so I thought what better time to post it!
...danielle
Definitely worth posting it again. It gives a lot of people a lot to think about, as it should.
Today Bennett's parents were in the Urgent Care, as Bennett fell out of a chair and got a cut near his eye that required some glue.
Nice. Try to stay intact until the brain surgery, willya?
That it is..really good. It's true for so many, and sad, and heartbreaking..and so much a part of the every day life for many families...think I might post it on our blog too.
This was wonderful, Danielle...I am going to send it to my SN parents here...I really do appreciate everything that you share...
Us "old" parents didn't have this technology when we were coming along, so we didn't have the opportunities to hear from other parents like now...
Keep posting anything you think will help us!!!
Love you!
Cyndi
Wow!! I hear you...this is right on. I may have to share this myself. Thanks!!
Sheila
Intense and true!
So, so true.
Thanks for sharing.
I'm not feeling the reverie of group identity, and don't mean to spoil it. But. I'm more than sad to read parents expressing that nothing.has.changed.in 15 years!
I'm not convinced that there has been no change. Albeit it is good to rally online and share support (this is new), I am thankful for Sue's expression for noting that there are newer lifesaving and life-improving methods available now that were not available when Michelle was young.
Barbara
Ken...when it rains it pours. I hate urgent care trips!
Mama Stump...feel free to re-post it!
Cyndi...I can't count the number of times I have felt blessed to be able to connect with other parents online. It has been a life line. And I'm SO glad that...you're here now!
Sheila...use it!
Margo...it definately struck a chord with me.
Barbara...I have no doubt that things have changed over the past 15 years. I've only been educated on the red tape of insurance and caring for a special child for a couple years now. My entry into this world was TERRIFYING...being denied coverage for Trevor's needed medication and being told if we proceeded with it any resulting hospitalzations would also not be covered. At that time we were paying over $10k out of pocket a year for our coverage. And that excludes our $5k family deductible. That was just the beginning of what often times feels like an on-going battle for Trevy. And I'm not terribly demanding. Now...that's not to say that I haven't run across wonderful people (like you!) who are dedicated to building better bridges. And WANT to help. Want to clarify. But I have to say...it has to be WAY too complicated here if RI has at least two organizations dedicated to helping parents understand their services! And because it's still unclear other organizations are popping up with parent reps whose job also is helping parents navigate all these complicated issues. Or having the nice lady at the SSI office educate me on how if I just moved to Michigan it would fall on that state's medicade in just a month's time. Enough already.
I'm probably feeling extra sensitive because I just learned from Dr. Rockstar's office...that if Medicade should deny coverage or not provide enough coverage that's the end of the road for us. They will not work out payment arrangments. And the cost is so astronomical that it is not realistic for a parent to consider fund raisers and such.
So while things have surely changed - for the better - over the past 15 years. I have a feeling some things either haven't. Or have gone in the reverse direction.
And as a parent who sometimes feels like too much of my energy is spent of fighting through mounds of red tape...for things that shouldn't be so hard won...Sue's words still resonate true.
...danielle
In terms of medical insurance, things have probably worsened since Sue's struggles. I have posted on that, multiple times - with much more than what is wrong but at least some practical suggestion for coping with insane restrictions on medical care.
I appreciate the acknowledgement, Baby Trevor's Mommy, and I know for sure there are thousands - if not enough - others out there like me who can and do prevent the experiences Sue described in the 2nd and 3rd sections. No EI as-you-know-it when Michelle was born in 1985. EI therapy services have the potential for preventing the physical devastation of not learning to move early in life - creating a cascade that contributes to ALL the descriptions by Sue.
Inasmuch as social acceptance of persons who function differently is still in process, (isn't society always developing?) I hope you agree Sue's sad description of social isolation is not as common now.
Re-reading the comments before mine - all literally cheering - why? Does.not.cheer.me. Spread the gloom. I just think there are better ways to for y'all to feel connected. Barbara
100% agree that the internet provides more community...and bonding than ever! I am SO thankful for the people who have connected with me...and Trevor...and our family!
I think you can't take this one post by itself though. When I have happy posts...there is cheering as well! And some of us keep connected in other ways...email...facebook...etc and have happier discussions there too.
I like to think we celebrate and advocate - together.
This post however...was about the struggles. And I think others were responding from a place of "I've been there too"! Sometimes it's just nice to have someone say outloud what you've felt in your heart on a battleworn day.
But then again...I can be a whiner sometimes! ;)
...danielle
I'm not judging anyone as whiney. I think most of the venting I read is legitimate but I refrain from joining in with the "I've been there crowd" - 'cause I haven't.
My blog-sin is to fire-off a comment too quickly. Please accept my apology, danielle.
Barbara
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