Team Robin!

Check out this BEAUTIFUL piece that Jacky Brodhead of http://www.jackysfantasyart.com did with Robin in mind, just before Christmas!

Check out this BEAUTIFUL piece that Jacky Brodhead of http://www.jackysfantasyart.com did with Robin in mind, just before Christmas!

Thank you.

This started a few months ago, as an idea. I saw someone start a fundraiser for the Tesla museum, and saw how that took off so quickly. It made me think of the struggles Robin has had to deal with, and how heartbreaking it has been, as a parent, to be helpless in the matter. It was a huge risk to take to start a fundraiser. On one hand, I figured.. nothing ventured, nothing gained. But rolling the dice was a gamble, as I would be sharing a VERY personal ordeal. Some of you know the history of Robin, and what we’ve had to deal with as a family. I’m a vocal person, an opinionated person, an open person, but still pretty private, all things considered. I’m fiercely protective of those I love, and even ferociously more of my kin. I agonized for days over the decision of whether to share Robin’s highly personal story and what Oklahoma has done to her, and even a fraction of what she’s been through. I was incredibly nervous, as it was my instinct to protect her as my daughter, but at the same time, I knew I had to open up in order to possibly get the help she wouldn’t get otherwise. After discussing it at painstaking lengths with my family, I gritted my teeth and did something I NEVER do. I took a big chance, knowing full well that it would be a heavily emotional rollercoaster, and it may burn me in the end, opening up like that. 

I was talking to a good friend last night, and we were discussing the experience running a fundraiser (as he had done one recently). It’s a life-changing experience, to be sure. You learn a lot of things; not only about yourself, but those around you. His was a business venture (still a child of passion), and mine was a bit more personal, obviously. I knew how this fundraiser may drive people away from me because I would be voraciously passionate about it. What I didn’t know is how many people it would bring me closer to. It’s taught me a lot. About people in general, about those I know, and as you’ve heard me say more than a few times… who is full of shit, and who is real.  I consider myself a very loyal person (it’s one of my defining qualities, I like to think), and I’ve learned that what I consider loyalty is a lost trait these days. I’ve learned that a lot of people I know who like to consider themselves heroes have done nothing more than expose themselves as self-seeking gloryhounds who want no part of anything unless it benefits them or makes them look like the superhero they want to appear to everyone else as. You all know how I’ve called out a group of people who have ample opportunity to step up to the plate they so proclaim to hold dear, only for them to fall short and be quite the opposite of the character they pretend to portray.

When a cause is as close and personal as something for your child, you do tend to get tinted perspective, but that can be a double-edged sword. It can show you who really not only cares about you as a person, but because they care about you as a person, they care about what you hold dear. It can also show you the real nature of some people, which can be VERY ugly, and through their indifference… hurtful. I’d be lying if I said I wasn’t hurt by some of the inaction by aforementioned people. Not because they matter as people, but because they present themselves as “heroes”, and were anything but. My only wish is that I’m not alone in seeing the transparency. And this, of course, isn’t to say my daughter’s cause is more important than anyone else’s (which despite my closeness to the matter, would just be silly), it’s just to say .. much like when Col. Frank Slade says in “Scent of a Woman”, “Well, gentlemen, when the shit hits the fan, some guys run and some guys stay”. I’ve been privy to that… many times. I’ve seen who’s stayed, and who and who has run, so to speak. 

Nonethless, I hope this doesn’t come across as bitter. Because while my eyes have been opened to some ugly things, I’ve also seen hugely amazing things. I’ve seen strangers who have identified with our plight or with Robin’s story. I’ve seen people I barely know message us with words of kindness and support when things got overwhelming. You all helped us through the loss of our beloved Miko. 

When things got tough, you got going. I saw people put their own reputations out there in order to get the word out about a young girl they didn’t know. I saw people who openly disliked me, put their personal feelings aside and stepped up because they were moved. I’ve seen people give up their time just to stand with us while we stood out in public to try and raise money for Robin. I’ve seen people get emotional when their own friends remained silent and apathetic. I have gained so much pride in my other two daughters, who gave of themselves to the point of exhaustion to do what they could for their sister. I have seen these and so many other things that have inspired and lifted me when I was beyond weary. You all kept me going when I was beyond discouraged. When I was ready to give up (and I was, on more than one occasion), it was our supporters… those who believed in our dream for Robin as fervently as we did, they were MY wings. 

I got testy at times, burnt out at others, and if anyone undeservingly felt the brunt of that, please accept my sincere apologies. I know I must have teetered on unbearable at times. When you couple the fact that this was for my baby girl, with the fact that I am such an assertive woman by nature, it’s bound to happen. Especially when I would see our campaign passed over for “PLEASE VOTE FOR MY PHOTO” or “PLEASE DONATE SO I CAN BE AT SUCH AND SUCH A CON”. It would wear on me, and yes sometimes, I would take it personally. I know I shouldn’t have. When you invest so much of yourself, it happens. There would be days and weeks where the needle on the odometer would not move. There would be nasty comments, things not moving like they should, bumps in the road… but even when the campaign was at its bleakest, there was always SOMEONE (one of you) who gave us hope, renewed our faith, and inadvertently refused to give up on us. You wanna talk the human spirit? This campaign has been a shining example, in a world full of unspeakable tragedies… things like what you all have done and shown us are a glimmer in the darkness. 

One of the things I learned, ironically enough, is that those that shone brightest? Weren’t the “heroes”, or those who proclaimed themselves to be “good” or “positive” people. Many of them, like me, were more fans of “evil” or practitioners of villany. Not those who constantly proclaimed their “goodness”, or publicly posted photos of their acts of goodness, but those who were more regularly in the background, those who were more comfortable rooting for the “dark side” (so to speak). A lot of people promised and did not follow through. It amazed me that the less many people had, the more likely they were to give. These sound like simple truths that many may know, and to honest, I also knew… but Life has a funny way of giving  you some awesome refresher courses in those most important things. Just to reiterate them and put that period on the sentence. I know that there has been a lot of that in this campaign.

I’ve learned a lot about myself, my limits, my abilities, my strengths, and what I am able to do under pressure, as well as what I can accomplish given the right motivations. This whole fundraiser has given Robin hope, brought us closer as a family, and really given us a look at ourselves as well as those who have supported us. 

I’ve never thought this was possible. Our cause being a such a drop in the proverbial sea, and really not having any major namebackers, or any media attention, no virality. We’ve been pretty unnoticeable in the grand scheme of the internet, but thanks to the wonderful people who shared our faith and resolve, we were able to do what I considered the unthinkable. And as Robin’s mom, who has been all-too-witness to some of the untold hardships she’s had to endure, I am blown away. To have watched Robin suffer as she has, and to feel like the only voice she has had, and to have go unheard for so long… it is truly moving and empowering to hear other voices alongside mine in the outcry against her treatment. Too long the state of Oklahoma has gotten away with negligence and irresponsibility in the care for Robin, and gone unchecked. Now that they know a spotlight is on them (albeit small), they have stepped up from a rickety manual wheelchair to an old and second hand outdated and used powerchair. It may not be much, but it says they have noticed us noticing them. And as her mom, whose rage and uproar has been largely snubbed for so many years… it’s overwhelming. Very And the deluge of protest of her treatment has been a source of immense comfort. Thank you. 

I keep writing in the hopes that someone I’ll find a combination of words that will convey the bevy of emotions I’ve been feeling, last night and throughout the campaign. I will continue to try and find a way to properly express my wonder and astonishment and deep indebtedness I feel. You all know I’m a pretty realist of a person. Some may say a skeptic or cynic by nature, and I’m very comfortable in that. When you have seen some of the abhorrence and repugnance that has gone on, and especially when it involves your child, and you’re powerless to negate any of it… it’s pretty easy to become jaded and disenchanted, and even exacerbated. To know that our voice for Robin has been heard, that others believed in what we were trying to accomplish  and to know that we DO have some power now to embolden Robin’s life, and give her a chance at something she’s so long been denied…. well, the Grinch’s heart grew three sizes that day.

I have personally thanked many of you, and will continue to do so, as words just seem so meaningless.  As I said, I’ve learned a lot about each of you, learned a lot about myself, and the biggest surprise of this campaign is that, through Robin, I have grown closer to a number of you than I could possibly imagine. I opened up, and thus a number of you endeared yourself to me because of that. And we became not just people for Robin, but a force. A force to be reckoned with. A force I am beyond moved to be a part of. And that force is Team Robin.

Thank you.  

Much Demmilove (which has taken on a while new meaning),

Jesse

Saw this today. Couldn’t agree more

Saw this today. Couldn’t agree more

Some of the Team Robin ornaments done today :)

Some of the Team Robin ornaments done today :)

These are the Team Robin ornaments we’re making for those who gave on Giving Tuesday. I have a secret stash of official Disney confetti (you can’t get it anywhere, it’s official Disney magic (http://4.bp.blogspot.com/-jNF1DzAXvAk/ThXumI_IDsI/AAAAAAAAABM/crXNZwWCnY0/s1600/Liberty+Tree2.jpg) that we will sprinkle inside each one. 

These are the Team Robin ornaments we’re making for those who gave on Giving Tuesday. I have a secret stash of official Disney confetti (you can’t get it anywhere, it’s official Disney magic (http://4.bp.blogspot.com/-jNF1DzAXvAk/ThXumI_IDsI/AAAAAAAAABM/crXNZwWCnY0/s1600/Liberty+Tree2.jpg) that we will sprinkle inside each one. 

Thank you to Tony Koch for doing this. 

Instead of a fake lottery Powerball photo, how about sharing something that can do someone some real good?

Thank you to Tony Koch for doing this. 

Instead of a fake lottery Powerball photo, how about sharing something that can do someone some real good?

We were lucky enough to get this clip of the Denise Taylor radio show where she talks about us! 

GIVING TUESDAY!

We saw this on our Facebook wall: 

I am sure you know about Black Friday, and Cyber Monday, my feelings on these have been stated before. Did you all know about “Giving Tuesday” ? Now THIS is something I can get behind. Instead of consumerism and greed, use THIS day to start your holiday right by giving to a charity of your choice! As for ME… well, I’m choosing something deeply personal, Team Robin. I can’t think of anything better to give for the holidays.     

Giving Tuesday? Had never heard of this! So we looked it up and found

http://givingtuesday.org/

Well, well, well. Color us educated. 

We hope this Tuesday you will give to Team Robin. And if you can’t, encourage someone else to. 

We decided that we’ll even create a a special Team Robin ornament for the holidays as a thank you to anyone who :

A. contributes $5 or more on Tuesday 

or

B. is unable to contribute, but encourages someone else to contribute at least $5 or more (that person must  e-mail us at team_robin@ymail.com and tell us who sent them.  

Thanks, and we hope Giving Tuesday helps bring Robin closer to that dream of a standing power wheelchair!



The first step in progress on getting Robin those wings!

Hey, it’s Jesse. Robin’s mom.

We all take turns using this blog, and I think we’ll use it to keep track of the progress we make in getting Robin that chair, so everyone knows where we are.

As I type this, Rob is on the phone, as he has been all morning, and will likely be all weekend. The good news is, we think we have a power mobility dealer that we will be dealing with. The challenge comes with the distance, as we’re in Florida, and she’s in rural NorthEastern Oklahoma. We will be trying to get someone on her end to help facilitate as best we can, but that in and of itself will prove to be a challenge, as you may have seen from Lisa’s post. I have left a message with Robin’s worker, and more than one with her father (none of which have been returned as of yet), and have asked Robin (this very afternoon) to try on her end to get someone to speak for her on her end. The power mobility dealer asked all the right questions, and since we’re not going through insurance, we feel the process should be much less hindered and hopefully, quicker. 

Our hope is that they have a representative head out to where Robin is and evaluate her for the best possible equipment. That will be step one. Tomorrow Rob will be speaking with a wonderful gentleman who contacted us over the course of the campaign, who has been a repairman for standing wheelchairs (and also has a son about Robin’s age with CP), and has experience with many of the companies out there. We’re looking forward to him steering us in the right direction and away from companies that would not be conducive for Robin. 

I’m working on starting the packaging and sending of some of the prizes thus far, as well as answering e-mails and a lot of the current paperwork. 

Needless to say, it’s going to be a busy weekend. :)

About my sister, Robin

It’s late, and I’ve been up catching up with stuff related to the campaign, and I wanted to vent and get some things out.

You know how some people take sacks of unwanted kittens and just throw them by the side of the road? That’s how I feel about what has been done to my sister. At 20 years old, she should be close to graduating college, traveling the world, pursuing a career. Instead she rots aimlessly in a nursing home because nobody cares enough to help her on the path to recovery. Of course, we as her family care more than anybody could, but a backwards and lackadaisical (at best) system keeps our influence to a minimum. A simple familial situation was grossly mishandled while she was temporarily with her dad in Oklahoma, Robin taken by child protective services under distorted and ill-conceived circumstances, and when they couldn’t find a family that could accomodate her special needs, they dumped her on the side of the road, so to speak, where nobody even attempts to help her.

In the nursing home, they refuse to do anything useful. The whole reason I’m doing this fundraiser is because the state is too disinterested to even equip her with a proper wheelchair. For those who have seen the videos, you’ve seen how useless it is. The foot supports are broken, and it’s manual. My sister doesn’t have full use of her hands! Why would you provide her a means of transport that requires full use of them?! A while back, we found out that she was no longer attending college due to the insurmountable difficulty she had getting to class. The state thought they could just throw her scholarship money and she’d be fine. Not the case. Everybody realized what was going on with her classes, and they stood by and did nothing while her future slipped away from her. 

The nursing home tried to put Robin in a vocational rehab program, meant to give her basic job skills. She is 20 years old, mind you. This is a case of too little, too late. Only THEN did they seem to realize she didn’t have the basic physical faculties to support herself, and therefore needed to learn how to do that before she could hold down a regular job. The vocational school was like throwing a bucket of water on a housefire and saying “see? i did something!” Only recently has anybody bothered to even make a token gesture. We’ve heard from her most recent case worker (they change them about as often as they changed Robin in foster placements) investigating and offering what help she could, and through her we realized she didn’t even have a physical therapist. Oh, yes, there was an assistant who helped her with a few exercises sometimes, but this person was not a licensed physical therapist. As her legal guardian they should be providing her with the means to improve her situation. We originally had trouble just finding what kind of chair was needed for Robin because we couldn’t find anybody qualified to give a medical opinion on it. The one doctor we DID find just recommended a “power wheelchair”. That’s like telling a person with a cold they need medicine.  I tried to get in touch with a lawyer who might be able to help us improve her quality of life, but not only could I not get in touch with the man, the several promises made to “call me back” were not upheld. Any newspapers I tried to contact wholly ignored me. Why the hell does nobody give a damn about my sister?!  I’m tired of nobody listening when we ask for help. Just because she is not the only person in the world with cerebral palsy doesn’t mean she’s any less important!

Just recently my mother called Robin to see how she was doing because she hadn’t heard from her in a couple weeks. The receptionist said that Robin was still in bed-at 1:30 in the afternoon. When asked why she hadn’t been assisted from bed, the lady replied “well, it is a nursing home.” My sister is not some aging retiree who has already paid their dues to society and needs to rest for the benefit of their health. She is a growing young lady and needs both mental and physical stimulation if she is to get anywhere. It’s amazing how her constitution has held up given the complete lack of interest and motivation from her peers and the adults around her. Everyone has just given her up to the ravages of life without even a whimper. I cannot handle watching her potential just slowly die out like a flickering candle like it is right now. I’d love to see her accomplish everything that she’s talked about doing. Right now the piece of garbage she’s been given is obviously holding her back, but if we can give her the standing wheelchair she really needs, then she could finally get up the confidence to maybe do some of the singing she says she loves so much. Not to mention she’s a huge animal lover, so she’d be more able to be an animal trainer and volunteer at her local shelter. She could even learn how to ride a horse. She absolutely could go back to school and be well on her way towards a degree in Criminal Justice. Right now she’s just so restricted, and I want to see her live the life that I see others living so happily. I can see her going out with a group of friends to the latest Justin Bieber concert, or the movies to see the latest Ashton Kutcher movie. Not to mention the traveling! In my family, traveling is the purest form of living. She could finally see all the places she’s talked about…the Big Apple, the dream lands of Europe, and of course-her family here in South Florida. Better yet, she could get her Criminal Justice degree abroad. By getting this wheelchair for her we could broaden her horizons so much farther than the dusty lands of Oklahoma.

I’m angry, and I’m angry for her. But she still gives me hope. Every time I talk to her, she’s still smiling. I don’t know how she does it, but despite everything, she’s always bubbly, and giggling, and cheerful, and smiling. And that … that hope, is what inspires me to keep trying for her. And hoping. And not giving up like so many others have. I still believe in you, Robin.

My sister

Lisa

http://www.goteamrobin.com