Black Crayons and Perfection

I continue to fret about how the stroke affects my nieces' and nephew's perception of me. Above is a page from one niece's kindergarten journal after Thanksgiving last year. The two of us stand in my backyard. There's the hot tub, the patio table and…

"Abigail, what's that?”

"A trash can."

I'm more recognizable: There's my cane, my glasses, and a pizza on my head. (Oh, sorry – that's a hat.) What puzzles me most is why I'm dressed for a funeral. Really? Of all the crayons she reached for black? I look like an old lady with both feet in the grave.

I suppose I should focus on the fact that of everything my niece did during that four-day weekend, she chose to document the afternoon spent at my house.

My favorite memory of that afternoon is of Abigail and me walking up the drive. I felt a strange sensation in my stroke-numbed palm, looked down and saw her little hand in mine. She had slid it easily between my clawed fingers. I was amazed. She hadn't given it a thought – as if I was completely normal.

Which makes me think: Perhaps my concern about the children's perception is more a problem of how I see myself.

As if to underline that idea, here's the card Abigail made for me at Thanksgiving this year:

I'm trying not to let it go to my head.

Grandma Goes Golfing

Soon after the stroke, my toddler nephew started calling me “Grandma.”

Because I was using a cane? Because I wasn't spending quality time with him?

Whatever the reason, it bothered me.

"Nate, I'm not Grandma. Who am I?"

"I don't know."

Something had to be done. He needed to be reminded that I am fun – a contender for "Best Auntie in the World." Weren't we the weekend before the stroke hurtling down a snow-covered mountain together on an inner tube? Was all the bonding we had done pre-stroke for naught? Unacceptable.

I racked my brains: Where could we go for a play date that would be manageable, fun and safe?

I decided on a nearby miniature golf course with a low-traffic parking lot. When we arrived, I left my cane in the car and took Nate's hand.

"Grandma, you're walking really good."

"Nate, I'm not Grandma. I'm Auntie. I know I seem old to you, but I'm not that old, I'm just sick. I'm Auntie."

We had a great time on the course and I even managed to work in a little hand therapy – gripping the club in my left hand and using my right to lower the club head to the tee. I actually made some good putts and sunk a few. I probably would have made more but Nate kept "helping" by picking up my ball and dropping it in the hole.

We had a heckuva time buckling him back into his car seat – but working together we succeeded and returned home in one piece.

The following week when I saw my nephew he shouted, "Hello, Auntie Celle!"

Yes! Whole in one.

Cane Craft for Kids

I often receive compliments on my hand-decorated cane to which I reply, "Isn't it great? My nieces did it!" After coming home from the hospital, I wanted to prove to my nieces and myself that we could still have fun; so I arranged a play date to decorate my cane. We chose to shop for materials together at a craft store, but the 3-D paint and self-adhesive gems also can be purchased online.

To make your own personalized cane, you will need:

(1) plain cane
(1 set) 3-D paint suitable for metal/wood
(1 package) self-adhesive gems
(1-2) children

The paint squeezes directly from the bottle meaning no messy brushes to clean afterward. It comes in a variety of colors including neon and glow-in-the-dark. The gems come in all sorts of shapes and colors. We picked some sparkly dragonflies and butterflies.

If you have more than one kid – let one of them do the top half, and one the bottom. Be sure to tell them to stay away from the handle and the tip.

I forgot to allow time for my cane to dry and had to rush off to a doctor's appointment, which created a drip effect in some places. Plan on letting your cane set for at least a couple hours before using it.

Besides being reminded of my nieces every time I receive a compliment, I never have people mistaking my cane for theirs in the rehab gym. My colorful cane has been a great way to cheer up this otherwise dreary accessory to my disability.

Happy decorating!

From the Mouths of Babes

Before I had one, I couldn't have explained stroke. I would have described a couple of symptoms – slurred speech, impaired arm function. I would've said "It's sort of like a heart attack." I didn't understand it was brain damage. I didn't understand the possible long-term effects. I've since talked with an adult friend whose concept was just as fuzzy.

It might be that we were never interested enough to pay attention to the definition, or that we were confused by the statistics we heard lumping heart attack and stroke together as leading causes of death. Or it might be simply that it's complicated.

My sister recalls her attempt to explain stroke to her seven- and eight-year-old daughters: "I told them 'Auntie had a stroke' and explained what that was. They listened and nodded and then a minute went by and they said, 'Wait, what's a stroke again?' "

Earlier this week I was picking up my brother's son from preschool when a little girl rode alongside me on her tricycle and asked, "How did you hurt yourself?" I struggled for words. How do you explain stroke to a four-year-old?

My brother's six-year-old daughter – by my side and never wordless – came to my rescue. "She had a stroke," my niece said brightly. "That means your blood stops moving and your brain gets all kooky and your arm stops working and your leg stops working and – it's really bad."

Only a child could give a description so dire and make me laugh.

Getting Better vs. Getting It Done

I manage three household tasks: Washing and putting away dishes, washing and folding laundry, shopping and putting away groceries. I do these things one-handed, which means I get things done only slightly faster than Congress. Imagine moving wet laundry from washer to dryer with one hand; moving dishes from rack to cupboards with one hand; carrying grocery bags from car to house one bag at a time.

The BIGGER problem is that I should be using my injured hand to assist with these tasks because that is the only way to retrain it. I can't expect that just because I improve at my formal hand exercises, I'll be able to grasp a T-shirt and fold it, or drop silverware into the correct slot in a drawer. I am going to have to practice these things repeatedly. However, when I attempt to do these things with my affected hand I often get so frustrated I default to using the good hand so I can get the job done.

It reminds me of my working days as a manager trying to implement an improved business process at the same time that daily business needed attending to. How can a business slow down productivity now for the sake of developing a system that allows it to become more efficient later?

Of course the Big Boss always wants both: Do it now and do it better. And in this case, I am the Big Boss. Sigh. Too bad I can't just fire myself and bring in somebody younger.