This evening, I stood in a buffet line behind a man with a diabolical-looking t-shirt. The back depicted a bat-winged skull wearing an open parachute. The words encircling the parachute dome read “HARDCORE.” Despite the menacing apparel, he didn’t look all that menacing. For one, he seemed to have a kind face. Secondly, he was holding one of the cutest baby girls I’ve seen in a long time. Incongruous as it was, it made me smile.
I guess I wouldn’t have thought much about this if I were any other place on earth than the Make-A-Wish Foundation’s Vacation resort. Located in Orlando, Florida, families of children with life threatening conditions & fatal diseases are invited to spend a week at “Give Kids The World.” Room and board at the villiage is free. If that's not enough, grant families can go, free of charge, to many of the area’s attractions. It’s carte blanche to Disney, Sea World, MGM, Universal, Gatorland, The Kennedy Space Center, EPCOT, Animal Kingdom – wherever the family wants to go. No event seems out of range for this organization. Even if a family has an aversion to theme parks, a week at the resort would be just as fun. It’s filled with pools, arcades, events, character visits and ice cream for breakfast. Make-A-Wish’s goal is to provide a quality family event…
After the first day here, I’d like to add it’s a Hardcore Family Event.
I’ll start with my story – then get into the things I witnessed during my stay. My sister was invited to apply for a Make-A-Wish grant when my nephew Jason was diagnosed with Complex-4 Syndrome (lethal title: C-Oxidase somethingsomething Deficiency syndrome.) The disease is all the things a parent most dreads: chronic, fatal, and without known cure.
Caused by a recessive gene, Complex-4 does not allow the proteins in Jason’s body to metabolize. Proteins are the body’s building blocks. So physically, this means that Jay is a very small, and very weak. Check this one out if you want a really potent medical term: Mitochondrial Myopathy (it's one of the 4 complexities). He can breathe only with the aid of a ventilator. He has a feeding tube that administers high doses of nutrients. To minimize the need for so many needles, doctors recently installed a pick line – for fast, easy antibiotic treatments. His trach needs constant watch and attention.
With so many wires, tubes and apparatus extending from his body, I’ve often thought Jason seems more transmission than boy. Transmissions, however, don’t require 16 hours of nursing care per day.
My sister is, of course, the strongest woman I've ever known. She is the single mother of three. She’s also a college student. Aside from the rigors of dealing with Jason, her OTHER TWO sons are also a handful. TJ, 8, is ADHD. He’s not merely the excuse-for-bad-behavior-type-diagnosis. He’s the real medical deal. Unmedicated, TJ careens off the control charts. When he takes his pill, he can be sweet, intelligent, and very very funny. Sometimes, getting him to take that pill is the difference between a good day and a bad day. Upon arriving in Florida, for example, he decided he didn't want the pill. He choked it up and tossed it to the ground. As it stuck to the bottom of my shoe - TJ was not the only one struggling for control...
Jill's oldest, Ian, is 15. He’s Jason’s best buddy. Where Ian frequently feels under-attended to, he remains Jason’s best buddy, and often cares for him with the same resolve as the paid nursing staff. On our last night in the village, he and Jill went out for some mother/son time. "Much needed time," noted Ian. It's so weird how everyone knows exactly what's going on...
At first, the invitation to apply for a Make-A-Wish Grant came as a loud, announcement that the Grim Reaper was loitering in the foyer. It was almost a confirmation of the things we all knew but was hoping someone at the hospital would be able to fix. You only get the grant if – in all the wisdom of current technology –your kid is not going to make it to adulthood. In the following months, the idea of a free family vacation seems more and more appealing. In Jill’s case, Make-A-Wish was the only way something so extravagant could occur. Everyone got excited. Somehow, I got invited. I was excited.
And then, the day of departure arrived. We all got up around 3 AM. We arrived in Florida around 10 AM. Everyone was pretty wiped out. But - with a limited time to do an unlimited number of activities, we had to keep moving. As the week progressed, boundaries and buttons were pushed, and all the annoyances you never notice about people showed up with a resounding "hi, how are you!" when you live in close quarters.
For example, in two nights, my sister, the day nurse, Yvonne, and I caught the night nurse sleeping on his shift - on several occasions. That's no way to treat my nephew! Now I know how Christ felt when he asked Peter, "Can't you stay awake?!" Night Nurse skidded easily onto my B-list. After that, we began to notice his extreme self-centeredness, "subtle" manipulative behaviors, and incessant talking. B-list to D-list, the night nurse is not someone I need to spend any more time with.
Then my sister grew upset with me, because I yelled at TJ a lot... I'm not proud to admit this, but I've always been very frustrated with TJ. No matter what I say or do, he has a smart answer, an immediate negative response, or simply will not do what he's told. Wether it be a control issue, middle child syndrome, tiredness is, fear of tornadoes, or genetics, he argues incessantly - and drives me nuts. It's amazing how a 9-year old can do that...
This is not to say it was a bad week; just a challenging one.
I'm starting to think that part of being at a hardcore family event is facing the inevitable... Facing the thought that chronic mitochondrial myopathy (and ADHD) can completely rule the dynamics of a family. Jason needs constant surveliance. The others feel cheated. Without going into detail, their life has been difficult even without disease. My suddenly-single-sister is frazzled to her ends, and has little time for the things in life that once caused so much enjoyment - like friends, hobbies, pets, church, volunteering, cooking, and singing in a choral group. It's been tough. I often see this "deer in headlights" look in Jill's eyes, and my heart breaks for her.
But here, in this beautiful hardcore paradise, shouldn't all that go away?
On our second night, Yvonne and I (and my sister, too) had a meeting of the minds with TJ. Jill had to discipline him severely. We explained that his behavior was ruining everyone's fun. He had to argue less, participate more, and try and be flexible - for Jason's sake. After all, he was the reason we were in Florida in the first place. As the week progressed, his behavior changed... He still argued all the time, but somehow seemed less passionate about it.
For perspective, I started watching other families around me. One night, while in the buffet line, a family in front of me had one wide-eyed, spinning little boy, who at one point, hit his father, flat palmed, right in the stomach. SMAK! I looked at the dad. “Wow, he’s really active,” I said. The dad rolled his eyes. I’ve seen that look. It's the same deer in headlights look of loss and confusion I see in my sister. My heart went out to that dad....
To further define that look, now that I witnessed it in many families there: It’s the look of someone seven miles beyond exhaustion. Someone who doesn’t want to discipline his handicapped child (or their ADHD siblings), but at times, if they were honest, would secretly like to POUND them - or simply run away. Of course, they’d never actually do those things – because they love their kids. But they’ve fantasized... To be really honest, when dealing with TJ, I’ve performed that deer-in-headlights look, and I’m just the aunt.
While in the village, we met a kid riding the same electric wheelchair that Jason has. We all turned at the moment the boy’s father noticed Jason’s. “Woah!” We all said at once. Peter adroitly zoomed around in his chair. On closer inspection, Peter also had the same ventilator and trach setup that Jay has. The dad came over, and told us all about Peter. He and Jill compared model numbers of medical apparatus. Peter soon got bored, and in a voice that reminded me of TJ, yelled, “Dad let’s GOOOOOO! I’m READY NOW!”
Later, I had a chance to speak with Peter's dad about other issues. I started to understand that it wasn’t just my sister’s life that was nutsy-cuckoo. It was every single family with a child with disabilities. I don't know how I never thought about this before...
Here's Peter's story: On their first day at the resort, Peter’s sister, Price, yanked Pete’s J-tube out. This is the feeding tube inserted into the stomach. Unlike similar feeding tube portals, J-tubes must be replaced by a doctor. That means, on his first day in Hardcore Paradise, instead of Disneyworld, Peter visited the emergency room.
I wondered if Jill's meeting Peter’s mom might lead to a little mutual support. I suggested that Jill go and talk to her. “Why?” she asked. “So we can compare notes on how glad we are that our kids didn’t die today?” Wow. She said it. Here in this candy-coated paradise of dying children, my own sister renounced the idea that anyone could offer any comfort over the inevitable.
This statement remains a little too hardcore for me, so I couldn't respond at all. Part of it is because I don't agree with her reasoning. Regardless, I'm of the opinion that Jill doesn't appreciate her childless sister giving her parenting tips...
The whole trip made me wonder how anyone survives a disability, let alone a single mother with TWO essentially special needs children. So I kept my ears open. On my last day in the village, I met a couple from Long Island. They had four kids. One was in a wheelchair. Two had ADD. Finally, I asked, "How DO you do it?" "I don't know," she replied. "I just do it. I have no idea how." That's exactly what Jill says.
I suspect, however, that the question's answer is so complicated, it's simple. Families love and respect life. To that end, they will clean up messy sheets, hold kids into the night, search for alternative therapies, seek the advice of doctors, and even accept extravagant vacations. They will do whatever it takes to give the thing they respect most. Because whatever life you have led, have caused, or been given, it's abundant. It's all-encompassing, and it's hardcore.
Before you get too depressed, I have to talk about the good stuff too... Because, abundant life is a mixed bag. There's inevitable good stuff, and its what makes hardcore family issues worthwhile. It's part of what makes perfect strangers walk up to me and tell me they see Jesus when they look at Jason. It's what makes seeing Jay's sheer bliss when he's zooming away in his wheelchair so much fun. It's not perfect, but it IS joy.
While visiting Universal Studios, TJ passed a bank machine with an "Automatic Teller Machine" sign. He asked, "What is it that someone has to automatically tell me?" It was unbelievable watching Jason see the Shamu show at Sea World. His eyes lit up - I told him "Shamu" was the Indian name for "Willie." (He's seen the movies a thousand times.) It was great taking Ian to Wal-Mart, where he picked out my postcards for me. He chose a "lovely" one for Dave - four fat broads on the beach.
It was fun seeing Mayor Clayton, the bunny mascot of GKTW Village come and tuck the boys in. It was a hoot to watch Jason giggle over the animatronic stars of The Country Bear Jamboree. It was fun to hold a copy of DIVORCE MAGAZINE (now I've seen EVERYTHING)up to the window at the 7-11, where Jill was waiting outside. We both shrugged at the same time.
Cutting all the lines at the parks was unbelievably satisfying. Watching all three of the boys feed the birds at Gatorland was so very, very peaceful...
And. It was really fun to introduce all the kids starring at Jason's ventilator to the PERSON behind the vent. "Hi, that's my nephew, Jason. Would you like to meet him?" The kids would be shy as Jay asked their names and ages. We met a father/son team from Superman's hometown of Metropolis, Indiana. We met stewardesses, 5-year olds, nurses, dads, and grandma's. It was fun letting people know that even though Jason is in a chair, he can think, speak, laugh, and shake hands.
Watching my independent and stubborn sister learn to accept gifts melted my heart.
After the first incident, waking up the night nurse became a game three of us played all week. In a hardcore world, you've gotta have a little fun.
I think Make-A-Wish Vacations mean a lot of different things. They start with the harsh reality of a prognosis, then they spread a little joy - and eventually, if we're paying attention, they teach us a little about community. Me? I seem to be taking this trip kind of hard. Being around so many families with so much struggle wasn't easy to watch.
Yet, in a toast to the abundant life, I'm so very very grateful.