Monthly Archives: April 2013

Groundhog Day or Earth Day: A Spring(?) Haiku

April 22: Earth Day April 23: Earth-Hates-Me Day

April 22: Earth Day
April 23: Earth-Hates-Me Day

Incessant snowfall

Relentlessly burying

My frozen spirit

When the going gets tough…

April is Parkinson’s Awareness Month, and this is a disease that impacts me daily. About a decade ago, my husband was diagnosed with PD at the age of 44. This hit us out of the blue—there was no family history to foreshadow the condition and we were attributing his symptoms to something very mundane—a pinched nerve, carpal tunnel syndrome, etc.

I could write a lot about my husband and how terrifically he copes with the hand he’s been dealt… The man never complains or feels sorry for himself whereas I’m pretty sure that, in his shoes, I’d be the hostess of a 10-year pity party.

There are lots of nuances to his symptoms, but the upshot is this: His day is ruled by his medications and whether or not they are working. We sometimes refer to it as a Jekyll and Hyde existence but that doesn’t seem quite appropriate—while it’s “good” when his meds are “on” and “bad” when his meds are “off,” the whole Jekyll/Hyde analogy makes it sound like he turns evil, when he actually handles his off times with as much grace as any human being could muster.

Recently, he came up with another analogy—when his meds are off, he’s wooden and can’t move and when they are on he becomes “a real boy.” This seems more appropriate, and the transformation of how my husband comes to life when his medication kicks in is not unlike Pinocchio.

But I won’t presume to tell his story and instead will share my own. This is what I’ve learned having Parkinson’s “by proxy”…

1) There isn’t much I can control. I have a control-freak nature. And while having children was my first lesson in learning the limits of what I can control, dealing with my husband’s Parkinson’s is like being in graduate school. I find myself reciting the Serenity Prayer a lot. It’s a good prayer. I’m hoping one of these days it will sink in.

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”       –Mother Teresa

2) There’s a method to His madness. While I think the adage, “God doesn’t give you more than you can handle” has some truth in it, I also think He likes pushing you right up against your limits at times. For example, I’m not the stop-and-smell-the-roses type. For a Midwesterner, I’ve got a rather intense East Coast approach to life and Parkinson’s is a condition that could try the patience of the most easy-going Southerner.

When I would think of my husband or myself dealing with illness, I imagined being struck with a more common condition, like cancer. This is a horrible, awful thing to deal with—no doubt about it. However, in many cases you can “battle” cancer, and if you’re lucky, you can win. Trust me, I’m not wishing my husband had cancer instead of Parkinson’s, but I sometimes think that fighting cancer would be more in line with my temperament. I like to think I would bravely don my armor and be at his side to help slay the dragons. But Parkinson’s isn’t a dragon—it’s the mosquito in the room whose buzzing keeps you up all night and slowly drives you insane.

There’s a David Byrne song with some slightly blasphemous lyrics that captures my perspective on this, “Green grass grows around the backyard shithouse. And that is where the sweetest flowers bloom. We are flowers growin’ in God’s garden, and that is why he spreads the shit around.”

Now, I don’t believe in a spiteful God, but I do think He is aware that my Serenity Garden is a bit overrun with weeds–and that my husband’s illness is part of a larger plan intended to help fertilize the flowers.

3) God provides help where you least expect it. Despite the negative lessons I’ve learned about myself, I’ve also learned that I’m not completely on my own. While testing me big time on the patience front, God has also sent some unlikely angels to support me through this process. People who accept me despite the aforementioned shortcomings. I’m very thankful for these people in my life.

Diamond or basketcase? The jury is still out...

Diamond or basketcase? The jury is still out…

4) We all need to cut each other some slack. There’s one aspect of my lack of patience that I’ll accept, and that is my growing intolerance of hatred and judgment and negativity. Life can be tough. But most of us are doing the best we can, and we all need to remember that. When it comes to disability awareness, I’m probably on the “more enlightened” end of the spectrum having worked for two organizations serving people with disabilities and consequently spending a lot of time around people with various conditions. Despite this experience, I cringe when I think about past incidents where I might have thought someone’s slowness was just disregard for other people’s time or assumed that someone’s lack of balance was the result of too many drinks. I know there are times when my husband’s symptoms are probably misinterpreted and that if others knew the true cause they would be more tolerant and considerate as well.

5) It’s anybody’s guess. Parkinson’s is a very individual disease. While there’s a typical progression to the illness, not everyone experiences their symptoms the same way. Some people’s illness progresses very quickly, others more slowly. I have no idea exactly what’s in store for my future–but then again, does anybody? I also have no idea how well I’ll continue to cope with it all. My only hope is that I continue to recognize the blessings in my life and appreciate those who are helping my husband and me along this journey.

Can you read this?

You may be noticing by now that Stormy and I both have a few quirky traits. Or perhaps a long running list of them is more accurate. One that I haven’t mentioned yet is my actual list-making/note-taking methods. To keep me on task, I prefer jotting my thoughts or reminders on random scraps of paper. You can often find multiple documents torn in weird shapes spread over my desk or  kitchen table. My handwriting also is considered what some call “chicken-scratch.”  Even my husband, after 13 years, has never made it through a full shopping list of mine without having at least a few words for me to decipher.

I think it may be because having one organized list that looks clean and neat is too easy to ignore. It isn’t begging for attention. Random notes tossed all over are a good reminder about what needs to be attended to. If I am in a meeting and having to use a professional-looking notepad, I never write on the lines. My takeaways are jotted in all different angles across the paper. People are baffled that I can read and follow my notes. If I haven’t proven myself to be very organized, it may be a source of concern for many in my office, but it eventually turns into a constant source of amusement.

This weekend at the cabin, my girlfriend looked down at one such list on the counter while making us a Bloody Mary. Shaking her head about my writing, she challenged me to come read what I wrote.  I walked over and rattled off what it said:

my list

  • Planting trees
  • Ant Dr.
  • Charlie’s Angels
  • Hair off Barbie
  • Advice from Grandma
  • Bumping into the sign
  • Naked PowerPlate

Her response? First there was silence. A bit later with a grin, she mentioned “I don’t even know what to say or ask.  You left me speechless.” I think she was a bit scared to know how I would explain that random list–which made perfect sense to me. See, there is a reason no one should be able to read my notes!

I’d be interested if anyone could figure out what that list was for. Come on, take a guess!

True Confessions III: Bad parenting

A few weeks ago, a Facebook friend posted about a traumatic parenting incident. With a toddler at home and a job that requires working odd hours, she had dozed off while her toddler napped and forgot to meet her other young daughter at the bus stop. A conscientious mother, she felt terrible and was beating herself up a bit over her all-too-human lapse.

 I sympathized, but inside I thought, “Oh honey, if that’s the worst you can come up with you’re doing pretty good…” Which leads us to our next True Confessions topic: Bad Parenting

Stormy: The little nipper – As a brand-new mother with a brand-new son, I decided to clip my newborn’s long fingernails. With 20 nieces and nephews, I was no stranger to taking care of babies, so I took out the tiny nail clippers and “CLIP!” snipped the end of my son’s thumb. He wailed, I cried, and I quickly handed him off to my husband who finished the job. A half-dozen years later, as a frugal young mom, I was giving my son a haircut once when I very cleanly snipped the top of his ear. It was one of those moments where I immediately registered what I had done but there was complete silence for about 10 seconds as my son scrunched up his face and I braced myself for what followed. He wailed, I cried. After that, I was willing to “cut my losses” and pay the Children’s Barbers for future trims.

KitKat: Just shake it off – I took pride in the fact that as a first time mom I didn’t get panicky over every little bump or fall. My son would take a tumble and I would tell him to “shake it off” instead of running to his rescue. This worked well for awhile. My son didn’t dramatize every little bump. Like most two-year-olds, he loved to run. Though still would trip over his own feet quite a bit. One day, pretending to let him win a race we were having down the sidewalk, he fell over (like many other times). He got up, I said shake it off and he took off running to win the race. Proudly, he turned around with a huge smile and blood covering his face.

Stormy: No really, I’m sick – My older daughter has an unusual relationship with pain. She has a crazy high threshold for physical pain: Shots when she was a toddler, broken bones, acute appendicitis, all hardly elicited a wince. At the same time, she has a low threshold for emotional pain or drama. So in grade school, when she told me she was sick and wanted to stay home, I chalked it up to “school-itis” and insisted she go. An hour later, I got the call from the school nurse. My daughter had thrown up in the hallway on the way to class. Discomfort and embarrassment. Way to go, mom.

KitKat: Full moon – As an over-scheduled family, we are often running out the door in a panic to make it to different events and activities. My kids learned early that they better be able to fend for themselves to get ready for anything they deemed important enough to show up on time. For the most part, they show up presentable. One Saturday after arriving at gymnastics class, I learned my daughter didn’t have on her required shorts over her leotard. She just turned five so I do usually check her out before leaving the house, but it was an extra crazy morning. It might not seem like a big deal. I didn’t think so as I sent her in with a quick apology to the teacher and took my spot with other parents to watch from behind the glass. I saw my sweet daughter run out. As she turned to face her teacher, all of the parents were faced with my daughter’s now-turned-thong leotard. I spent an hour listening to the giggles of the other parents as my daughter mooned us in a variety of positions.

Stormy: Bad day on the playground – My newly adopted Chinese daughter was 5 years old when she had an unpleasant encounter with a wood play set. We picked her up from day care and my usually sunny girl was crabby and whiney for the next hour or so (but whining in Chinese, so we didn’t really know what she was complaining about). Finally, at dinner she was scowling and wincing and gesturing to her bottom, so I took her into the bathroom and made her “drop trou.” There, embedded in her rosy little behind was a 2×4. Okay, that’s a slight exaggeration, but only slight. It literally was the equivalent of half a toothpick. I yelled for my husband (do you see a theme here?) who extracted the offending splinter from my grateful daughter’s delicate derriere. In fact, after removing it and washing it off, we taped it to a piece of cardboard and labeled it, for posterity. Or for posterior-ity, if you will.

KitKat: Time to learn a lesson – My son is careless with his things.  Off our watch and at school it is even worse. His desk and locker is a disorganized mess. We have missed conference appointment times, homework, and teacher notes that were crumbled in his desk. Numerous water bottles and clothing items have left for school and never returned. It is a constant battle we have with him. Take care of your things. Be responsible. When it was time for a skating session in P.E. class and he wanted to bring full hockey gear, we sat down and discussed that his equipment is valuable and he has to bring it home each night. Sure enough by the fifth day he showed up at home with no gear. Instantly he started his defense, how he put it nicely away after class and someone must have stolen it. He did look for it. It wasn’t his fault. That is when my tirade started about how careless he is with his things and always had an excuse. After making him sit through a lot of talk about responsibility, telling him he could help pay to replace it and adding on the dreaded no electronics punishment – I stormed off saying maybe he would finally learn his lesson. It was a long weekend. Then, the following Monday, we got a call from school saying they had found his equipment. It had accidentally got moved by a janitor when moving some tables around and they were sorry for any inconvenience. They had found his nicely packed bag, safely tucked into the other classroom. My lesson ended up in being how to say sorry when you are wrong.

Kool-aid for grown-ups

Kool-aid for grown-ups

Stormy: Putting the teeny in Martini – And my greatest shining moment, my crowning achievement of parenting, was the time my family and my sister’s tried to escape the relentless winter with a hotel water park getaway in downtown Minneapolis. After several hours in the water park, my husband was in my sister’s room watching the hockey game with my brother-in-law and the kids were in my room watching Nickelodeon. I jumped in the shower to wash the chlorine off of myself and came out to find the kids huddled around my youngest who looked positively green. “What’s wrong?” I asked my son. He responded that my petite 5-year old daughter had poured a glass of Kool-aid and wasn’t feeling well. I looked at the plastic pitcher no longer full of the bright, colorful liquid inside—not Kool-aid, but premixed Cosmopolitans. Nearly 100% booze. I panicked for a bit: How much had she drank? How would I explain this to the paramedics? I spent several minutes debating the lesser of two evils: Having the Department of Human Services questioning my obviously neglectful parenting or having my daughter experience alcohol poisoning. When I looked at my little girl, her skin was pale and her eyes were glassy–this wasn’t good. Then, she promptly threw up the bright pink poison. Immediately, the color came back in her face and her eyes brightened. Crisis averted. I could keep my terrible parenting a secret. Well, until now. But since my daughter is now a beautiful, happy 18-year-old, I managed to get her to adulthood in spite of myself.

KitKat: On the rocks – Stormy isn’t the only mom who inadvertently provided their child with a taste of liquor well before appropriate. In the summer, often after work I go up on my balcony to enjoy some fresh air, a VO Manhattan and page through a magazine. Once in awhile the kids will follow and my daughter would always ask for ice. I’d grab one from the glass and suck off any lingering whiskey (or so I thought) before feeding it to her. This would keep her quiet for a bit, which was a big deal at three. One morning, she asked for ice and my husband grabbed one out of the freezer. We were quickly told his ice didn’t taste good like Mommy’s. No wonder she was quiet! From then on I remembered to bring a cup of pure ice out with me.

Okay, it’s clear that neither of us are going to be getting Mother of the Year anytime soon. Does anyone else have a good story to share? After all, this whole parenting gig is Easier Said Than Done…

What goes up must come down: A Spring Break fairy tale

Well, I am back, and not too happy about it. As Stormy mentioned in her last post, I was off enjoying Spring Break with my family. Now usually, I would say “enjoying” a family vacation is a bit of a stretch. It usually means whiny kids out of their element, too much together time and expectations set way too high on the quality memories we would create together. Plus, family also includes my parents who we stay with in Arizona. This adds to my personal stress of keeping my children from disrupting their calm lives and of wanting to show off how great my children are turning out due to our fabulous parenting skills. (This usually is when my parents witness all of us at our worst, as I try to force the unrealistic image of a perfect family which then turns into a complete family meltdown.) Toward the end of vacation, I usually start dreaming about my escape back to work. But, this trip was different.

Perhaps my children have reached a new stage. Now they are old enough to also appreciate the difference the warmth of the sun and relaxed schedule can make to them and their parents’ mood. Nor, do they need the same strict routines to function like somewhat tolerable human beings. Or, it could be that I have

View from my thrown

View from my throne

relaxed a bit and decided if my five-year-old daughter wants to do her normal nonstop morning chatter to her grandparents, instead of me, there is no need to intervene. Instead, I took the selfish approach of picking up my book and enjoying the morning quiet. After a couple days, it became the morning routine and household joke as I stumbled through the kitchen, poured a cup of coffee, waved to all (without a word) and headed outside to my lawn chair to read. “There goes Mom again.” I’d be joined a couple hours later as the kids jumped into the pool. Which leads me to another great stage, I didn’t have to be in the pool morning till night watching the kids play. They both can swim on their own now. I could pretend to watch (with my sunglasses masking my gaze) all the “look at me” and “watch this” tricks poolside. Once in awhile I would make my appearance as the special guest jumping in and getting lots of excitement and applause for it.

Aside from a few outings, we pretty much just hung out, relaxed and enjoyed the setting. (One outing was on horseback, a favorite activity since childhood of mine that I will post about in more detail later.) I didn’t even check in at work more than filtering through emails once a day. Pretty impressive with a new website launching the day I returned. I do have to give my unplugged-from-work credit to my great and completely self-sufficient staff, who told me (and meant it) to STOP whenever I tried to check in. It was the only time I actually liked being told to “STOP” and I paid attention and took the advice to quiet my rambling thoughts. For ten days, I truly relaxed. I won’t get into full boasting of all of the luxuries and other tidbits that made this trip so perfect, but it was simply a fabulous escape from reality.

What goes up must come down. And I realized this up in the air, just before midnight on Sunday and about 30 minutes away from landing back in Minneapolis. I had planned the late return thinking the kids still had the following day off to catch up on sleep and after all of my rest, certainly one day short on sleep wouldn’t be too hard to handle in exchange for taking full advantage of my vacation time. But on that last leg of the plane ride it suddenly all hit me. Tomorrow, instead of leisurely walking outside groggy from so much inactivity, I would be running to a work in 30-degree weather after only four hours of sleep. I would be faced with issues from a website launch, a frantic pace of catching up on all that sat idle waiting for my return, and to top it off, it was my birthday. Yes, I was turning 44 up in the air and I certainly didn’t see it as a something to celebrate. As I mentioned in a previous post, I had lost an entire year and only recently realized it wasn’t my 43rd birthday. With midnight looming, it looked like I was facing my own Cinderella story.

It was no fun realizing I was right. I kept a good face on at work but inside I was miserable. All of the things that had made me so happy had been swept up and taken away. I kept trying to be mature and told myself I was lucky to have had that time to enjoy, but the more rational I tried to become, the more irrational I felt. I wanted my fairy tale back.

cinderella

It would be a shame to end the post that all was lost and it was a horrible, no good, very bad day (I loved that book as a kid!). There was a slight happy ending that I made for myself. I did what any mature working woman/overstressed mom would do. I came home, put on my pajamas, and hid in my bed with a bottle of wine. Under the birthday disguise, I claimed a free night and wanted my servant children and husband to bring me food as needed. After spending my night with hours of T.V. (all favorite shows I had recorded but never time to watch) and a few too many glasses of wine, I finally dozed off, content.

Looking at the forecast ahead, the temps are rising so hopefully my mood will follow. Onwards and upwards! I won’t give up hope on for my own happy-ever-after ending though.