My kids are fed up. They’re sick of both of their grandmas being sick. Their sick of us being sick of it. They’re sick of changes in schedule, flip-flopping of plans, and modifying just about everything. They don’t like it. They hate it. And they’ve decided to replace their grandmothers with a lifesize cardboard cutout.
This late-night announcement came just hours after Grandma J’s lung cancer surgery and minutes after Grandma’s decision to delay her Alaskan cruise scheduled for today. This of course means that the kids couldn’t go on the giant cruise ship for a tour — this grandma sick business is really cutting into their summer fun.
Our moms are both sick. @La_Gringa’s mom had a cancerous tumor cut from her right lung yesterday — a horrifying orderal that’s gone on for over a year. Despite crap-house stats for lung cancer, Grandma J. looks to beat the odds with a very early stage tumor and extremely good overall health. But yesterday, during the five-hour surgical procedure, it sure didn’t feel like the good news that it is. It felt like hell for the entire family. And although kids are clueless sometimes, it was hard to miss the frightening undertone from the past several months. They sense that something is out of kilter, even if they can’t put their finger on it.
My mom is doing better, but not better enough to be better enough to travel. Complications from CIDP, Lupus, Hepatitis and skin cancer are messing with her vital organs and she can’t risk being away from medical care if things dip, even slightly. Just 16 hours before departing for a week-long cruise, the doctor pulled the plug. Mother fricker. The blows just keep coming.
The kids don’t care about the wheelchair or Grandma’s ballooned-up face. Really they don’t. But it does affect them, “I am sick of my grandma being sick,” Thing 2 said while waiting for her pasta to arrive yesterday. “I’m hungry and dont’ want to talk about this,” replied Thing 1. Ah, the female-male dynamic of managing crisis. They went on later to tell me they wish they could make a life-size cardboard cutout of their grandmas and carry them around doing all the normal stuff they are used to doing. Convinced that they could still visit the cruise ship, they schemed how to make a cardboard replacement for grandma. “What’s the difference? We can put the fake grandma in a wheelchair and just roll her up the plank to the ship.” The planning went on and on until I chimed in:
You can make a fake grandma and take her anywhere you want, but your real grandma will still be here waiting to do it herself.Read More
All hell has been breaking loose for a few months now. As most of you know from my posts at SV Moms, I’m pretty open about most of my life and it’s awesomeness and even crappiness, at times, but not this. This is just personal and hard.
Every morning for four months, I wake up wondering how, and if, my mom will wake up today. My mom is really fucking sick. And, truth be told, she really is the only thing that matters to me minute-to-minute right now. My life is on automatic-pilot. I get done what I have to get done and go where I should and do what I should at the bare minimum I can do it. Everything is stopped.
My mom doesn’t have a disease you’ve ever heard of and there aren’t really any cool races you can do to donate money for a cure. There’s not a t-shirt or a fund, there isn’t a sparkly skirt to wear in her honor. It’s not cancer where everyone knows someone who has it. It’s a lonely, mean, shithouse disease called Chronic Inflammatory Demyelinating PolyNeuropathy, an unpredictable disease that attacks the body at-will. One day you might walk, the next, you are bound to a wheelchair. For hell’s sake, she was *just* dancing at my brother’s wedding six months ago.
Everything in our world has come to a stopping point. That is, until last weekend.
Last weekend I joined a group of 12 mom bloggers for a 200-mile run from Napa Valley to Santa Cruz. We’re not talking diapers-and-cheerios-type moms, we’re talking serious female writers who are on the forefront of a leading influential industry. As exciting as the run sounded, by the time I made it to the team dinner, I was convinced that I’d made a huge mistake. I truly didn’t feel it was wise to leave my family. It’s just not a good time.
We left for Napa in the wee hours of the morning, and by the time @la_gringa set off for the first leg of our two-day journey, I understood that it wasn’t only a good time to be doing this race, it was The Time to be doing this race. It hit me that the Universe had given me these specific women, during this specific weekend, for a specific reason: they were here to let me GO.
And Go, I did. I ran four legs totalling 17.2 miles in 30-something hours at a pace of about 9:50. Every time I’d hop back in the van, I wanted to hug every single team member. They didn’t know the immense gifts they were giving me by the moment. They teased me about my runner’s high — every tree, person, view from the third row of the GMC van was more beautiful than the next. But, it wasn’t the endorphins at all, it was the joy of being in-motion. I’ve done a lot of racing in my time, every po-dunk 5k, four marathons, a haphazard 31-miler and dozens of 1/2 marathons. Each race comes with something special, but this one was different, it wasn’t a race I ran, instead, it was a freedom to run when my mom cannot walk. A freedom to GO when my whole world is STOPPED.
I’ve been home from the race for two days. Mom was admitted to the hospital this morning. She’s not well. It’s not good. As I pack up to head over to the hospital for the umpteenth time this afternoon, I take with me new gifts of GO. From my Heather, the ability to laugh through this; from Marie the excitement of working things out; from Christine the ability to steadily put one foot in front of the other to get to tomorrow; from Linsey the wisdom to walk, not run the toughest of hills; from Jane the subtle ability to stay-the-course even on the windy road; from Van 2, that lying under the stars can inspire; and from my dear @la_gringa the reminder to put my shoulders back (or in, as the case might be) and keep GOing.Read More
My mom was in a wheelchair when I was a kid. She’s all good now, but a few childhood things remain. One, having a mom in a wheelchair gets you to the front of every line at Disneyland. Two, wheelchair races are not for sissies; and three, the closer you get to the holidays, the harder it is to navigate stores. As you know, wheelchair-bound or not, shopping displays. life-size Santas and hoards of merchandise racks are a bitch to work around.
My Mall Police badge of honor started in 2003 when my twins were born. I’d gone to the mall and realized in horror that I couldn’t get through aisles in stores I normally could navigate with my double-wide Twin Savvy Stroller (or any of the other six strollers I had at the time). I walked into a store in San Jose and literally could not get to the items I wanted to see. As I pulled my stroller backwards to wiggle my way in, I noticed a wheelchair-bound woman trying to shop in the aisle. Eventually she gave up and left the store. In a rage, so did I.
That night I looked up the size of double-wide strollers online. It just happens to be the same width size as the American with Disabilities Act standards. So, in essence, my stroller was exactly the same size as a wheelchair. The wheels were turning. In theory, I thought, I could stalk every store in the mall and report the ones that were not compliant with wheelchair regulations. The more I thought about it, the more ticked-off I got: if it were my mother in a wheelchair and she couldn’t go Christmas shopping because she literally could not get down the aisle… the image outraged me. I decided that I would become the self-proclaimed Mall Police.
The next morning I headed out to Wesfield’s Valley Fair Mall in San Jose. I was armed with a notepad, a digital camera and my stroller (yes, the kids were in the stroller). I went up and down, traipsing myself through the mall, only stopping at Nordstrom (mild violations only) to breastfeed the kidlets. At every store where I could not get my stroller down the aisle, I would ask for a manager. I would tell them that my stroller was the exact width of a wheelchair and that they were in violation of the law (and of potentially buyers). Then I marched myself down to customer service where I reported each store. To Westfield’s credit, the mall management called me the following day. He had spoken to each store and warned them he’d call the County if they did not comply immediately. Got to give the guy credit for listening to a mom-on-the-warpath.
The following year, I noticed the same thing. And again, the Mall Police put on her badge and hit the mall with an agenda. This time I noticed retailers were more sensitive to the problem and more engaged in finding solutions. Leaving one store, I overheard the store manager tell a worker, “Move the rack, she’s right.” I smiled. Eat my stroller dust.
I am right. There are 2.1 million wheelchair users in the US and my mama was one of them. And every single one of them deserves 36 inches to get their chair around a store. In fact, there’s more. Many of our cute stores in San Jose are massive issues for people in a chair. Campbell, cute as can be, has multiple stores that are losing revenue every day from people who can’t get through the front door, muchless shop inside the stores.
Six years later, I’m still the Mall Police during the holidays. My children, long out of strollers, help me each year, pointing out the clearance violations. Indeed, it’s such a random, strange way to give to my community, but for me, it’s a passion. It’s a need. The holiday season is here and I plan to hit the stores tomorrow. Look out.Read More
“Reloj’ is a damn sad song. It’s a bit of a family song, though. As memory serves, this was my grandmother’s wedding song, which, funnily enough, has some of the saddest lyrics I’ve ever heard:
Clock, don’t mark the hours, because I’m going to go crazy when she leaves forever at dawn. We only have tonight for our love and the tick-tock of the clock only reminds me of this pain…
At Gecko Grill the other night, we danced and sang and wiggled our non-Cha-Cha butts to “Reloj” as though it were “La Bamba” Kids, aunt, uncle, parents, even La Gringa got her dance-on. But why this song? My grandmother had a painful life, but I when I hear this song, I think of how truly extraordinary her life was and how much of her still lives on in all of us.
…you get the picture. The most tragic song for a blessed and tragic life. We danced the other night under the stars, family all around and I smiled up to the sky, giving a wink. Time didn’t stop, abuelita, it went on, and so did your spirit.Read More
Love you, abuelita. Miss you.