Sunday Snapshot: The Wheelchair

Remember that kid from the Sixth Sense who said, “ I see dead people”? Well, my kids see something too, although thankfully it has to do with the living.

They see wheelchairs. And, they see them everywhere.

Ying has even been known to mistake riding lawn mowers for wheelchairs. That’s how excited she gets about them.

Her chair has been ordered. In spite of attempts to persuade her otherwise, it’s coming in bright pink.

This is a demo chair. Not her personal Permobil K-450.

The minivan has been purchased and is currently in Michigan being modified.

It is not bright pink.

She will also drive her chair with her arm, but hers has been customized so that the joystick is closer to her arm and has increased sensitivity, so that it takes less pressure to control it.

Both sets of wheels, do, however, have horns.

Watch out world, here we come.

Righting the Entitlement Mentality by Ripping Out the Root

This is the kitchen of a home in a remote Hmong village. The typical meal in this house is rice. Sometimes the family has vegetables, like this squash, which tastes like a mix of cucumber and pumpkin. The woman who owns this house was gracious and kind. She had work-worn hands from working in the strawberry fields 8+ hours a day and yet did intricate needlework. She invited us to share a portion of her family's meal with dignity and grace.

It’s getting pretty hot around these parts. So my four-year-old son came up with a pretty creative solution. “Let’s put a sign on our house,” he said, “and buy one with a pool.”

On the one hand, I admire his problem-solving skills. We have a house with no pool, let’s sell our current one and buy one that does. On the other hand, I’m horrified that he thinks life can be be upsized so easily.

He is still a preschooler, so I’m cutting him some slack when it comes to the economics of life (I mean, how many times have I wished it was just that easy), but still his comment got me thinking and thinking hard.

On the surface, I could attribute his attitude to a grocery store that hands out samples, a dry cleaners that passes out stickers, and a Sunday School, who, on Easter Sunday had treats. I mean, come on, no wonder this kid thinks life is easy come, easy go. He’s from a generation that doesn’t even have to screw open a jar to get applesauce, all he needs to do is apply a minimal amount of pressure to a squeezable pouch.

But on the other hand, while that may be one facet of the problem, it’s a little too easy to just stop there. The bigger problem maybe not be with just the apple, but also the tree it fell from. 

Don’t get me wrong. My son has seen both my husband and me put in early mornings and late nights. We’ve emphasized to both children that we work to put a roof over their heads and food on the table. Both Luk Chaai and his sister are expected to help around the house be it putting away the silverware and “dunking” dirty laundry in the laundry basket. They know we shop sales and momma hasn’t ever seen a coupon that she didn’t like. But they also know a few other things.

Things like: that food fell on the floor, for heaven’s sakes, throw it away! Don’t eat it. The x.y.z broke? We’ll buy another one. The refrigerator is empty of anything that looks good right now, let’s go shopping and swipe the magic card.

I’m not knocking the good life. Heck, I’ve worked hard for it. Sacrifices have been made. Dues have been, and are being, paid.

But it goes beyond that. We’ve live in an age when it’s just not enough to do “experiences” instead of birthday presents. It’s not enough to limit Christmas to just something you want, something to wear, something to need. It’s not enough that we volunteer at the soup kitchen one day a month, put out our old clothes for the Salvation Army pickup, or that we sponsor a child in a Third World country.

The issue isn’t that we don’t recycle, compost, DIY, or consignment shop enough. That’s not the problem.

You know where my son got the idea that a house with a pool would be nice? From me. I went to a friend’s beautiful new home and came home gushing about it. What’s worse is that’s not the only thing he’s learned.

From me he’s learned that an honest day’s labor will get you the occasional massage, once-in-a-while overpriced latte and regularly scheduled cut and shampoo at an upscale, fancy-smelling salon. I’m glad he’s learned these things. In fact, I hope he strives for them (and more) too.

But I also know that when I squint long and hard at my own life that I’ve taught him the fallacy that if you work hard, then life owes you. It owes you granite and a two-car garage and a lifetime of days covered with smiley face stickers. Putting your nose to the grindstone is supposed to “opt you out” of life’s unhappiness and only bring you the likes of the promises inside fortune cookies.

This obviously isn’t true. It’s not the message I want to live or convey.

So we’re going to work on it. Our starting place? Not buying a house with a pool and making a habit to say outloud the things I’m grateful for each and every day.

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So you got this far waiting for some connection, any connection, to limb differences. Yeah there wasn’t one. Sorry about that.

But in an effort to read more fiction I did stumble across this book,  The Running Dream by Wendelin Van Draanen. By coincidence, it’s about about a BK amputee and, so far, it’s quite a good read.

Thoughts On Reclaiming The Playground: An Update

A few months back, I wrote this about how we’ve decided to handle rude stares at the playground and elsewhere.

Since we’ve implemented our new approach, I thought I’d write an update to how it’s working. It’s going well. Here’s why I think that is:

We’ve gotten better at identifying places that are going to send the stare-o-meter spinning off madly into outer space. Over time we’ve learned when we’re going to have a high-volume staring day. Basically, if people paid to get in, like at a museum, aquarium or amusement park, chances are they are going to stare double. Apparently if people have paid an entrance fee, they feel like they’ve paid to look at everything and everyone, politely and impolitely.

It’s actually helpful for me to know this. Because I’m not caught off-guard, I tend to be more proactive from the start. Instead of saving my snarkiest look for the umpteenth person who got caught in prolonged and tortured double-take, I start with the very first person I see staring. I say hello firmly and with a polite but pointed smile. Then we all move on and enjoy what what we came to see.

A straightforward attitude works. Here’s what I’ve noticed, a straightforward attitude puts everyone at ease. Since we’ve taken a much more active approach with uncomfortable staring, people have approached us more frequently. Several times now, I’ve had moms approach me and tell me, “I don’t know what to say [to my child].” I think that’s really brave of those moms. When the shoe was on the other foot, I didn’t take that approach.

When an opportunity like that is created, it gives everyone involved a chance to just talk. That talking leads to learning learning, for all of us.

In this scenario, I usually tell kids that Ying was born with only one arm and one finger. Depending on the age of the child, I typically mention that only having one arm/finger doesn’t hurt. Because she almost always has her nails polished, I try to use that as common ground. Ying loves it because it gives her an added opportunity to show off her wild polish and wag her crazy finger.

I’m always happy for moments like this because it doesn’t make anyone feel ostracized or out-of-place. I’m not feeling huffy or indignant and the other parent isn’t tying to bail out of a sinking ship. We’re all empowering ourselves and our kids, in different ways.  I’m pretty sure that’s what we all want.

It’s okay to end it. At least once in recent history, a child didn’t stop staring even after my “hello” accompanied by smile. It was followed up with a “Can I help you?” Our starer didn’t budge. At that point after a few more minutes, I announced loudly and firmly, ‘We’re done here” and we moved on to a different play area in the same park. Before I would have felt like this was slinking off with our tail between our legs. I no longer do. I can’t change the world, it’s not my job. But I can change an uncomfortable environment for myself and my kids. That is my job.

This is an evolving process. I’m still learning, as are my kids. I don’t think we’ve solved a rudeness (combined with lack of education) problem in one month’s time. But I do think we are making headway on handling this issue with civility and grace.

Silver Moon

Last week was kindergarten graduation at Luk Chaai’s school. He wasn’t a graduate, but did he have a role in the program.

As part of the program, they asked each of the graduates what they wanted to be when they grew up. Doctor, teacher and fire fighter were pretty standard fare. Some of the more creative answers were: face painter, race car driver, civil engineer and, everyone’s favorite, super hero. One little boy, who has a clear understanding of the sometimes complex role of law enforcement, wanted to be both a police man and a wrestler.

I sat there reading the answers as they came rolling across the screen, and I was grateful. I have no idea what Luk Chaai and Ying’s future occupations will be (although given Luk Chaai’s rather uncanny ability to find a loophole in my instructions, I have an inkling as to what his future career path may be.)

My gratitude was from the fact that my kids can be whatever they want to be. Their personalities, passions and natural abilities will dictate their futures. Ying may have some steep obstacles to overcome if she wants to be, say a surgeon. But I’m ruling nothing out. More than once they have known love. Love sows confidence. They have been bathed in the silver light of the moon.

Did you see this weekend’s super moon? Super indeed.

In Search of Ordinary

Our recent road trip meant a little extra reading time. While I love fiction, I’ve been on a bit of non-fiction kick lately and used the extra downtime to finish Brene Brown’s book, I Thought It Was Just Me.

In her book she says “[W]e equate ordinary with boring, or even more dangerous, ordinary has become synonymous with meaningless.” That thought sat with me; then I sat with it. I kept coming back to it.  I mean, I want an extraordinary life. Who doesn’t?

But here’s the thing, maybe extraordinary has been hyped a bit too hard. Not every taco you eat can be “the world’s best taco.” Not every sunset can be more brilliant than the last. Sometimes it takes ordinary for us to see the world for what it really is.

There is merit in waking up at the same time every day to drink the same coffee so you can peel your eyes open enough to do the same job today that you did yesterday. I’m not talking about living a joyless, adventure-less, stuck-in-a-rut life where your most complicated decision is a tan or khaki pants and rye or wheat for lunch.

What I’m trying to say is that ordinary matters. It counts for something too. Only when our lives are ordinary can we encounter extraordinary.

Be faithful in small things because it is in them that your strength lies. Mother Theresa

Road Trip

So we took a little road trip this past weekend. It was the finale trip in the car before we graduate to the wheel chair minivan. Even though it wasn’t an all-day road trip, I was still a little apprehensive for a couple reasons. First, just a few years ago Luk Chaai screamed for a significant portion of this same trip.  Second, Ying’s activities in the car are pretty limited, so I wasn’t sure how she’d do during a longer drive.

Happily, I can report we had a pretty great trip. There were requests for snacks even before we left the neighborhood and there was crying as we re-entered the neighborhood days later, but all-in-all, it was a really good trip. That's really saying something too, given that we ended up with two flat tires. But that’s a whole ‘nother story.

The day before we left, I had Ying buckled into her car seat and was in the driveway still trying to figure out how to rig up something for her to use as an easel of sorts for her feet. I was striking out with everything I tried, but luckily my neighbor saw me and came over. She suggested a cutting board and had one that was just the right size.

I covered it with craft paper and painter’s tape because no one wants foot, even cute foot, on their cutting board. My wrapping job was a little wonky, but it did the trick. The board slipped a few times, so we stuck a clipboard behind it to sort of wedge it down.

The real life saver though wasn’t the loaner cutting board. It was the Car Bucks. I found them here along with the travel bingo. Our Car Bucks could be cashed in for a treat or a toy. My husband had the genius idea that a nap earned you two bonus bucks and given that we traveled during Ying’s naptime, she was a big winner.  Thankfully, we were able to keep her pretty content in the back seat with her Camelbak and baggie snacks.

We also had a few books on CD and the Cinderella soundtrack. All of these got played on fade because the back seat wanted to hear them many more times than the front seat did.

Traveling is going to change a bit for us from here-on out. I thought about that a few times during this trip. Not only will we need the mini van, but we’ll need wheelchair accessible hotel rooms, restaurant seating, etc… It’s not a big deal, but it will be an adjustment for us. Hopefully the learning curve isn’t too steep because as it was, we ran low on bendy straws on this trip.

But even if the wheel chair maneuvering is a bit of a hassle at first, memories will still be made. Heck, that may even be the memory. I know two kids who won’t soon forget the Father’s Day that involved a late night and one awesome tow truck.

Play kitchen at a children’s museum.

Run, run, run as fast as you can. You can’t catch me, I’m a speedy man.

Cactus by night.

Mini trolley

Army, Navy, Unstoppable Ideas

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Have you read Wrecked: When A Broken World Slams Into Your Comfortable Life? If not, you need to. I’m listening to it from here. It’s a free download. I’m still in the first few chapters but it’s like someone let this guy into my brain. He had me at: “Fear isn't the enemy, inaction is.”

Choke Hold

I’ve never been able to make things grow. It’s not that I’ve had a black thumb, that would have been something to aspire to. When it comes to plants, I’ve always been a Mistress of Death. It’s been a decade plus, but my mom is still telling the story of how I killed the cactus she bought for my freshman dorm room. 

But this year we planted a garden and, somehow, things grew. When we picked our first zucchinis there was a victory lap around the raised bed and gloating texts with accompanying pictures (no one would have believed me otherwise.)

Now that we’ve got veggies growing, I guess I need to weed the rock bed.

The other day when I was watering the garden, I noticed that the cucumbers were overtaking the beans. As I started cutting back those wily cukes, I realized that it wasn’t just that they were encroaching on the beans’ territory. The tendrils from the vine were wrapped around the stalk of the bean plant and were literally choking it.

Sometimes life is like that darn cucumber plant. Worry, fear and tedium try to strangle the life right out of you. Our ability to laugh and be joyful gets put in a headlock by interrupting alarm clocks and redundant red lights. On days like that, it can feel like you’re breathing airplane air – recycled and compressed. 

When that happens  walk barefoot in the grass, take the long route to the mailbox even if it means crossing over to the other side of the street, drive home with the windows rolled down. Light a candle with dinner, and, by all means, eat that apple you’re calling dinner while sitting down. (If it’s a melted Milky Way instead of an apple, remind yourself that dark chocolate is practically a health food.)

Do pliés while you brush your teeth. Take a picture before you charge your phone. Pray a short prayer, for someone else.

Hold fast to this universal truth, tomorrow a new day is dawning. There’s bound to be something unexpectedly glorious about it. 

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As a somewhat unrelated side note: need something to do with all that zucchini? Try these zucchini pizzas bites or Mexican zucchini.

Wonder

We’ve been doing science experiments lately. So far we’ve done milk painting and made elephant toothpaste. The milk painting was my favorite, but Ying and Luk Chaai liked the elephant toothpaste so much that we did it twice. It left them both with a sense of wonder.

I think I’m pretty in tune with marvel. I marvel at my children, about the people they are becoming. I marvel at how the evening light makes the grass golden. I get lost in a good book, marveling at how the author strings the words like milky pearls.

But I stink at wonder. Unlike my inquisitive son, I do not wonder how a pen works.I just get annoyed when it doesn’t. I don’t wonder why red and blue make purple, I just know they do

So, today I’m going to stand in a little awestruck wonder at the wild brilliance of this life. I will wonder why daisies have yellow centers and why a fork has four tines.

I will wonder if my prayers rise to the heavens like steam or if they arrive as falling music notes. I will wonder if our souls have colors and if there is a sense of taste in the life hereafter.

I will wonder about the inherent beauty of life and the glory that is mine.

The fairest thing we can experience is the mysterious. It is the fundamental emotion which stands at the cradle of true art and true science. He who knows it not, who can no longer wonder, can no longer feel amazement, is as good as dead, a snuffed-out candle. ~Albert Einstein

Two Ws

Here are two Ws (not to be confused with W-2s) – water and writing.

Most congenital quads seem to have an added buoyancy in the water. I’m not sure why, maybe because their limbs don’t weight them down? Regardless, Ying loves the water and that’s loves with an extra tall capital L. In fact, two days after we met her, we all went swimming. After we got out of the water and were toweling off, we caught her scooting back to the edge of the pool. We let her go to see how far she was going to take it. It turns out she meant business and was all set to jump back in, luckily my husband has long arms. Since then we’ve kept a close eye on her because where there’s a will there’s a way!

We’re trying to get her signed up for swim lessons, but in the meantime, she’s been enjoying  floating and paddling in the water. She can’t wear arm swimmies or a life vest, but she does fit in this. (I think it may be this one, but it’s a little hard to tell given that my parents purchased this about four grandkids ago and it’s a tad faded.)

When it comes to writing, our OT presented us with a new option a few weeks ago. Initially Ying was using her her feet or chin/shoulder to write. She used the two pretty interchangeably and didn’t seem to show a preference for either one. But now that she’s starting school in the fall, we at least needed a starting place for the OTs.  Although she shows great dexterity with either her feet or chin/shoulder combo, the original plan was to start writing with the feet. The advantage of this was that she wouldn’t fatigue her already hardworking right arm. The disadvantage however was that her writing surface would need to be on a different level than her peers (with her sitting either on the table or on the floor).

As we began experimenting with different chairs and options, however the plan evolved. She is now going to start out using this. Our OT made the one she’s wearing in the picture but a similar model can be purchased here.

The upside of this is that it extends past her arm a few extra inches and she doesn’t have to hunch her neck and shoulders over the paper to use it. This means she can see and cover more of the paper with less physical exertion. So far she really likes it, so much so that she colored her shirt and lips a pale lavender last week.

While this adaptive device helps tremendously, it does have a few drawbacks. One being that while she can take it off herself, she can’t as of yet put it on. As a side note: we have the same issue with the U-cuff. The other down side to this, is that it’s hard to change out the pencil/marker in either this one or the commercially made one. This doesn’t seem like a big deal except that three-year-olds like to switch colors, like, all the time. Even with these drawbacks though, I’m really glad we have this option and I’m curious to see how her writing will develop.

So we’re getting our w&ws down, now we can work on r&r.

Beauty and Body Image

In the movie Charade, Sylvie says to her friend Audrey Hepburn, “It’s infuriating that your unhappiness doesn’t turn to fat.” How true. Not only do our own body flaws annoy us, but the fact that other people don’t seem to struggle with those same issues can be just downright maddening. These days I have a new consciousness about body image, both in relation to what I’m projecting about my own body and how I view other people.

I’d like to believe that I’m pretty comfortable in my own skin. I’ve navigated the phases -- wanting curly hair when I had straight, wanting to be thinner when I should have just wanted to be healthier, etc… -- and made it to the other side. The other side being acknowledgement, if not complete acceptance, that this is who I am.

How does the saying go? We spend all of our time as teenagers trying to look the same and all of our lives as adults proving we’re different.  It’s not just that I’m no longer striving to be like everyone else, these days I’m happy that I’m different. But what happens when someday my daughter wants to be the same as everyone else? What then?

It’s easy for us to point in the direction of Hollywood and Photoshop as the ones providing us with unrealistic physical expectations. It’s not that these aren’t valid gripes, they are. But Anne Shirley was dying her red hair an unfortunate green long before Photoshop had a liquefy tool. Sometimes it’s easier to divert blame than to be introspective. We are the only ones responsible for how we look and how we feel.

So what do I want both my son and daughter to know about self image? I want them to know this: 

You are not a supermarket magazine cover. You are you. You are beautiful. You are perfect. You are whole. You are beautiful because of who you are, because of how you choose to live. Some day, more than once, you’ll thank your lucky stars for those long lashes and perfect skin. But some day too you’ll know it’s not the sum total of who you are.

Know that beauty and strength, inward and outward, are synonymous. Learn that confidence is power and that power is intoxicating.

Realize that you were created with and for a purpose. Buy cute clothes, get good hair cuts, take care of yourselves.

Weep with those who weep and laugh like you mean it, even when you’re the only one laughing.

Share what you know with others but spend a good part of every day talking to yourself.

Carry an umbrella but dance in the rain.

Do what Grandma says and iron your clothes. Make yourself presentable and attractive. Feel good about what you wear and how you wear it.

Kiss babies, smile at blue-haired ladies and old men. Stay up late reading books, wake up early to good coffee and in the mood to compliment others.

Be gracious and kind to everyone, but above all yourselves.

Figure out your best asset and play it up. Show off that skinny waist and those buff biceps. Be proud of how you were made. 

Mix and match patterns and stripes. Own classic clothes but keep something unexpected at the back of your closet.

Remember that it’s okay to be angry, that it’s okay to be mad. You are neither a robot nor the Tin Man. But make sure your anger is directed at the right place for the right reasons.

Pray.

Know that you are fearfully and wonderfully made. You are not mistake, you are not an accident. You are beautifully, wonderfully, extraordinarily you and I love you.

The Seventh Circle of Hell

If buying a car is Dante’s sixth circle of hell, well, then buying a wheelchair accessible car is the seventh.  We are in the thick of the car buying process and here are a few things we’ve learned.

Depending on the type of power wheel chair and your current car, you may be able to adapt your car with a  lift.

Exterior Lifts – Are lifts for the outside of the car. It seems scooters are most commonly transported in exterior lifts. Exterior lifts tend to be the most reasonably priced of all the lifts. The downside of these being that your wheelchair is exposed to the elements and other drivers. If someone rear ends you, they rear end your chair too.

Interior lifts – Are lifts that pick up the wheel chair and place the chair inside the trunk of an SUV or van. They have some pretty cool curbside lifts, like this one. The weight capacity of the lift varies depending on which one you buy. Pediatric power chairs tend to be heavier because of the additional functionality required of them. My daughter’s chair, a Permobil K450, goes all the way down to the floor. It’s an awesome chair, but it’s heavy and big. We tried to make a curbside lift work for us, but weren't able too.  If you’re looking into an interior lift with an arm, you need to make sure your car has enough width AFTER the arm is added as well as ensuring the that arm can handle the weight. You need the wheelchair to fit when the chair is in it’s highest position.

Side-entry minivans  - A side entry either allows the person in the wheelchair to be either in the front passenger position (assuming an adult) or in the middle of the car where the second row would be. This has multiple issues for families with small children. With a side-entry, only the wheelchair can sit in the second row because you need clearance to turn the wheelchair around inside the car. No one can sit next to the wheel chair in the second row. For us, this meant my son would be sitting alone in the third row and my daughter alone in the second. That’s clearly not ideal. The other issue with a side-entry is that you need to  be in a double-wide handicapped spot to have enough clearance for the ramp (or take up two parking spots).

Image source

Rear-entry minivans – If you get a rear-entry minivan, you lose cargo space because the minivan needs a path down the middle of the car to travel. What you gain however is the ability to have the person in the wheelchair sit almost side-by-side two middle row passengers in captain’s chairs.  We won’t be able to parallel park and get the wheelchair out in the same go, but that seems like a small price to pay to have our kids sit side-by-side.  Numerous sales people have cautioned us against a rear-entry van saying that it would be dangerous for my daughter to back out in traffic. While I see their point, I’m not letting my three-year-old back out into rush hour, so I don’t think it will be a problem.

Ramps - Both side entry and rear entry vans come equipped with manual or automatic ramps. All modern manual ramps are now spring-loaded so they are fairly light to lift although you will be bending down to the ground. The automatic ramp works with either a button at the driver’s seat or remote.

This certainly isn’t all we’ve learned in our crash-course in wheel chair car buying.  There’s plenty more to share: like how your car won’t be modified on the spot but will be shipped to one of the conversion locations across the country to a conversion center (thus incurring you shipping costs both ways).

But there is an upside to the wheelchair placard/plates – the coveted parking spot in crowded parking lots!

Margin of Safety

I’m a worrier by nature. I’ve kind of always been. Some people worry about growing old or about meeting a menacing stranger in a dark alley. I’ve always worried about being in a situation where I won’t have enough control.

You know Warren Buffett’s famous quote: “When you build a bridge, you insist it can carry 30,000 pounds, but you only drive 10,000 pound trucks across it.” To that I give a hearty amen. But that’s a great principle when it comes to investing; it’s a lousy one when it comes to living.

Life wasn’t meant to be lived in the middle. It’s amiable there, but are you really living if you always play it safe? Life is about whispering at the breaking dawn and shouting into the wild wind. Yes, no matter how greatly you dare to live and dare to dream, some days you’ll still end up in the grocery store lane with the slow checker and behind the person with 26 items in their cart instead of 15. But even on those days you will know the riches of the life you are living are all your own.

Life isn’t formulaic. It’s fascinating and frightening. It’s relentless and unforgiving. It’s bittersweet and broken. It’s buoyant and baritone.

It’s only given once.

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Here’s a great article on Rep. Tammy Duckworth in which she says, “Just get out of your own way and just go try it. What’s the worst thing that can happen? I’m not going to lose my legs again.”