Hoax

So, the little girl who got “kicked out” of KFC for having a face too scarred to let others enjoy their 11 herbs and spices has been deemed a hoax. The little girl does, indeed, have a legitimate medical issue – she was attacked by dogs that took her eye and left her precious face severely scarred – but KFC did NOT throw her out for being too scary. That was made up by one of her family members in order to get some cash.

Gross.

When I first read this story, my heart went out to this little girl. There is absolutely no doubt that she has been through hell. Getting attacked by dogs is some seriously scary stuff! Then, to be kicked out of a freaking fast food restaurant was beyond my comprehension, but there are truckloads of idiots existing out there who might have lost all compassion and forced her to leave. This scenario broke my heart. Evidently, it broke many other hearts, too. The family raked in over $100,000 PLUS the $30K that KFC pledged to help with medical bills. I’m not against this little girl getting money for her legitimate medical need, but the way they did it was deplorable. Despite the new evidence that this was a hoax, KFC is going to make good on their donation, which I applaud.

Now, I know that these large companies have strong legal teams that sort through stuff like this. Slip and falls at Walmart, fingers in Wendy’s chili, a real battered chicken head in your pile of McNuggets… these legal teams sort through the nonsense claims. I used to work for Ricart Automotive (a very large car dealership in Ohio) answering phones and the majority of the calls were pissed off customers wanting to speak to the legal department. I’m sure some were legitimate claims, but many were just looking for a settlement. Squeaky wheel gets the grease, I guess. Whatever. Many people make a good living off their frivolous lawsuit lifestyles while showing no remorse.

So, why am I bothered? Because these people really hurt those who have a legitimate need. There was a woman here in my hometown¬†of Aurora, CO who shaved her child’s head and led everyone to believe that this child had cancer. The little boy – age six – totally believed that he was dying. She received over 25K in donations. So, she didn’t just take advantage of the generosity of others, she tortured her own child into believing he was going to die. Unfortunately, this scenario isn’t uncommon. She wasn’t the first person to think of such a scam.

Gross.

So, we’ve been at this for 10 years. We’ve received thousands of dollars from gracious donors. With that, we’ve paid medical bills. We’ve paid for travel to NYC and KC. We bought food and paid utility bills. We bought medications. And, admittedly, we bought toys and treats and clothes. For all of us. There were a few of you who gave us some money labeled solely with “Go have some fun with this.” So we did. Those fun things got us through the tough times. Video games for Ben (and Matt), toys for Madeline, crafts for me. A road trip to forget about cancer. Little things that got us through the nonsense and brought us some much needed joy.

Okay, so here’s what pisses me off about all of this. These parasites find a way to make their stories go viral. And then when it turns out to be a hoax, all the lovely and generous people get deflated over helping these idiots fund their lies. I’ve been taken twice by internet ding-dongs. One lady started her Facebook page at the same time I started Ben’s. She was able to garner over 5,000 “likes” in just a few weeks, whereas Ben’s page has steadily grown to 1,600+ over the last couple of years. She kept pushing the issue of sharing her page (a share for a share is what it’s called… she’d share your page on hers if you’d share hers on yours…) Well, she turned out to be a big fraud. She had people all over the world sending her stuff (she liked owls) and always talked about how happy it made her to receive a package from someone new. It made her forget her illness. All true statements that she stole from real people who are truly hurting. And then once she was found out… “POOF!” She disappeared.

So, now I really don’t “share for a share” anymore unless I directly know them. And this is what I’m afraid of. People will get so cynical (like me) and stop supporting those who truly need it. Who need the donations to survive. To live. Or to enjoy fleeting moments in between medical treatments. Damn these people!

And then there’s the person who stole my son’s identity to support her own weird needs. She never took money, but she garnered a lot of attention. Know this: I know who you are and I’m watching you carefully. If you “POOF” from my view now, you’ll only prove who you truly are, which I will then share with the rest of my world. You wanted attention, right? I’ll be happy to give that to you but I guarantee this is the type of attention that you will not like. Hopefully the slap on the wrist you got from authorities has turned you away from screwing with others emotions. Our very real hell afforded you the attention you so desperately desired… hope it was worth it.

I’m to the point where I wouldn’t be offended if someone wanted proof of my son’s illness. Many charities require a doctor to fill out a form stating that the medical need is real. I think that’s acceptable. Because there are so many turds out there abusing the system. A little due diligence never hurt anyone, and people who are truly fighting for their child’s life won’t be offended to give you their doctor’s name or the actual details of their child’s diagnosis. The frauds can rip off words from the rest of us on our blogs that talk about throwing up and hair loss and all that… those details can be faked. But take the extra step to make sure you’re not getting screwed.

Better yet, why don’t these frauds just simply get their own life? I mean, if they really and truly want to trade their health for my son’s illness, let’s find a way to make that transfer happen. Otherwise, just STOP!

Please. Stop.

 

 

 

June 22

*Warning: Today’s post has some fairly offensive swears. I’m not sorry.

Today is my son’s 13th birthday. I gently kissed him before taking the dogs out for a walk – hoping to not wake him – because I am praying that he’s dreaming of something way more amazing than his current reality.

I am so fucking sick of cancer overshadowing every single day. Every. Single. Milestone.

I know. I sound defeated. I feel defeated.

I’ve been throwing myself quite a pity party lately. One month ago I was saying “Well, after this week of scans we’ll know what we can plan for the summer.” And, of course, after learning of the spot, I was put on hold for another month. Then, my sunshiny attitude said, “Well, after THIS set of scans we’ll know what we can plan for the summer.” And on Wednesday, Dr. Macy said she felt pretty good about where he was (she said 95% sure that this spot was nothing) but still wanted to do a different scan to be 100% positive. So, on Thursday, we did the scan. And it didn’t give us the extra 5% we were hoping for. In fact, it changed the game. Two spots. The talk of doing a biopsy. The talk of treatment options.

“So, are we calling this a relapse?” I asked with one hand clutching my thigh as tight as I could – hoping the physical pain would keep me in the present – as the other hand gently caressed my stunned son’s shoulder.

Dr. Macy said no. Not yet.

Yet.

Goddammit.

All the adrenaline that I had been storing up for the second scan week, I’d let go of 95% of it when Dr. Macy said she was 95% sure it was nothing. Then, it all came flooding back at once. It was like slamming on the brakes to avoid rear ending a car, but instead of that feeling dissipating after a few minutes, I’ve managed to maintain it for the past three days. It’s highly uncomfortable. I’m trying to focus on making this an awesome weekend for Ben. This is supposed to be a major milestone! He’s becoming a young man! Unfortunately, he’s had to be more of a man in his 13 years than any other man I’ve ever known. I could go off on a tangent here and express that Ben is more of a man than ANY OTHER MAN I’ve ever met. But that’s anger best used for another time.

So, as I turned my head away from the conversation to look out the window behind me, I caught sight of my hand still caressing Ben’s shoulder. His thumb and forefinger were pressed against the bridge of his nose. Men don’t cry. At least that’s what he’s heard from others. I can only imagine the battle between letting the tears flow and hearing the echoey¬†voices telling him to “Man UP!” I don’t know this, of course, but he didn’t want anyone to see those emotions. The emotions of a potential relapse. The tears of fear. I saw two small wet spots spreading on his shirt like a gunshot wound. I weakly stated to him that it was okay to cry. Only then did I feel the silent shake of his small frame as more tears fell despite the barrier he’d created with his fingers. I looked out the window hoping to suppress my own. Mom isn’t supposed to cry either.

Unfortunately, I’ve worn my heart on my sleeve throughout this entire 10 year process. He knows that I’ve been terrified on this journey. He knows I don’t want to lose him. He knows that if he leaves then my world will be shattered. (Don’t you DARE respond to this post with “at least he’d be in a better place” or any nonsense about “Angel wings.”) Sometimes I think he fights so hard because he feels accountable for the rest of us. I don’t want to add to his stress, but I’m pretty confident this child feels responsible for all we’ve been through. He knows that we’re financially fucked because of his treatment. He knows we only have “fun” because other people generously give. He knows that we can’t pay for the wonderful opportunities he receives. And he feels responsible. I had to ask for people to help us get his birthday present. And that makes me feel like shit. Especially when others bluntly remind me that I can’t do it for myself – for my own children.

We’re being held hostage again. So I’ll take baby steps to the shower. Baby steps to wash my hair. Baby steps to get through this day of celebration. Knowing that each baby step will take us closer to the bullshit that cancer continues to throw our way. Happy Birthday, Ben. Enjoy that cake now. You have a biopsy in the morning and can’t eat after 7 pm.

Actually, that last statement was for dramatic purposes (did I really need to add more drama?!) He was supposed to have a biopsy tomorrow, but for now we’re waiting for his surgeon to get back in town – the surgeon originally consulted doesn’t think she can get to the spot because of there being too many blood vessels surrounding it. More on that tomorrow, I guess.

I will say, however, that if Ben has relapsed, I’m taking him to Hawaii as soon as possible because that is his greatest wish right now. And I’m going to ask all of you to pay for it. And I’m not going to feel guilty about it. In fact, even if he hasn’t relapsed, I’m still going to take him to Hawaii as soon as possible because he deserves some freaking JOY in his life. I didn’t hold a fundraiser the last time he relapsed because of the overwhelming guilt I have surrounding asking people for help.

But screw it.

That’s what friends are for, right?

 

 

 

An Open Love Letter To Camp Wapiyapi

My Dear, Sweet Camp Wapiyapi:

Oh, how I Love You.

You, a shining beacon of love that engulfs my children in a warm and glowing hug of gooey hope and acceptance; recruits loving and nearly impossible-to-believe humans who exude compassion and ridiculous amounts of cheer; encourages me to be a “smother” yet gives me the confidence that my delicate – yet tenacious – children are absolutely fine without me….

Oh, how I Love You.

From that first year I drove the 90 miles to your beautiful mountain setting in 2007 to today, my love for you withstands. I entrusted you with my precious seven-year-old. I was apprehensive to leave, yet wept at the concept of having this rite of passage – this normalcy – of sending my child to camp. Sure, it was a camp specifically for cancer kids, but it was priceless for someone like me who never anticipated – or felt secure enough – to leave their child in the care of others for a full five days. And as I watched from behind the wheel of my vehicle as my sweet boy confidently grasped the hand of his companion, I cried. The image forever burned in my mind of my heart incarnate as he held the hand of his much taller companion – a wonderful college boy named Chris – as they walked off toward their cabin, ready to make new, non-cancerous memories.

Oh, how I Love You.

You tout that you offer these children “The Best Week of the Year.” That’s a hefty claim, but one you consistently make good on. Many events in this world of pediatric cancer are “once in a lifetime” events. Gee. How do I explain this graciously? So many philanthropic hearts want to offer the pediatric cancer community something amazing – and we have had some incredible opportunities. I’ve appreciated them all, of course, but what I’m trying to say is that Camp Wapiyapi is CONSISTENT. It is something that my children look forward to every year. Even the year that Ben missed when the cancer came back or the year that he had to leave early because he had just started chemo. You remain a part of our FAMILY. Do you know what that means to me?

Oh. How I Love You.

And now that Madeline is old enough to go, it has been instrumental in her development. This is one of the things I LOVE MOST about Wapiyapi – the fact that Madeline is included. She has been able to bond with siblings just like her, who often feel forgotten PLUS have the ridiculous distinction of having to watch their sibling struggle through something so awful. She has learned that she is not alone. The silent shame that she carries – the fact that she gets a bit peeved when her brother gets cool stuff and she doesn’t – isn’t a burden at Camp Wapiyapi. Other siblings carry that, too. It’s NORMAL in our abnormal world. And the fact that Wapiyapi includes her, accepts her, and loves her – just as much as they love the children who have the cancer diagnosis – means the world to her. And to me. In fact, you saw her blossom this year when she stood alone on a stage in front of you and belted out a song in the talent show. She chose, “Let It Go” from “Frozen.” Any parent with a young girl living in their home knows this song – and perhaps is more than ready for this song to be a passing phase – but honestly? I would have loved to be in the audience listening to my daughter belt out something we’ve been working on… to simply “Let It Go.” But since I wasn’t in the audience, I am genuinely touched by all the people who came up to me yesterday to let me know what a beautiful job she did.

Oh, how I Love You.

I felt like a star yesterday when I pulled in to your stunning mountain setting. I opened my car door to a flood of adoring Ben and Madeline fans who longed to gush about my beautiful children. Your descriptors filled my heart: Sweet. Loving. Caring. Compassionate. Kind. Adorable. Amazing. Strong. Polite. Gracious. I can live on these words for a long time. But the super cool thing is that I know you offer these words to all of us. You LOVE our children. You sincerely, undoubtedly, whole-heartedly love our children.

Oh, how I Love You.

The joy you exude and instill in my children will keep us coming back for more. I hope that my children will want to be Junior Companions when their time comes. Ben’s companion this year – the AMAZING Tanner – has fought cancer twice. I would think there might be a time when a teenager/young adult who has fought for his life would want to leave all that behind. But the fact that Tanner stepped up to make the best of his horrific experience – that he was there to encourage my little fighter to keep on fighting – touched me to my core. You are an incredible young man, Tanner. I sincerely hope that my Ben and Maddy follow in your footsteps and offer their amazing insight just like you have. You are so very brave. I applaud Wapiyapi for giving you an environment to use those amazing talents. And Maddie, thank you for caring for my Maddy. I don’t know where Wapiyapi finds beautiful souls like you, but I’m forever grateful that you shared precious time with my daughter.

I know, I know. My cynical self doesn’t usually get this oozy when it comes to sharing the love. However, I simply cannot express my gratitude for Wapiyapi without it getting all sticky. You’re like a unicorn wrapped in the glossy threads of cotton candy. You can’t believe what you’re seeing is real. It’s so beautiful – and nearly mythical – that all these amazing people come together to care for these remarkable children. It’s almost like a mirage… the swirling beauty wavering behind the intense heat. And as we walk closer – the thirst for this beauty palpable in our dry throats begging for a sweet drink of love – fearful that you are actually a mirage and will disappear at any moment. When we arrive and are able to touch you, we weep in relief that you actually do exist.

You’re real. Thank goodness.

Oh, how I Love You.

Sincerely,

Ben and Maddy’s Mom.