Thursday, December 1, 2016

Beating the Burnout Beast

Caretaker burnout is real. It's ruthless. It's persistent. It sucks.

It didn't creep up on me as I might have expected. The onset was explosive. It first struck exactly 10 years ago. At the time I had Emily (an autistic teen), Hannah (who was 11 years chronologically but had the cognitive and self-care abilities of about a 9-month-old), James, an ADHD/dyslexic toddler (who had yet to be diagnosed and was completely out of control), and a newborn who insisted - loudly - from the moment of her birth that she would be held only by me, only in my left arm, and that she would require this treatment 24/7. I was also working 11 PM to 7 AM as a pediatric nurse.

Daniel came home one night after seeing a movie with some friends. As soon as he walked through the door I said, "I'm leaving."

"What?!" he asked, eyes wide and obvious panic in his voice.

"As soon as this one," I nodded down to the cranky, obnoxious, persnickety leach suckling at my breast, "is weaned, I'm leaving. I don't know where I'll go or who I'll go with, but I'll need a week. You'll have the kids."

I didn't leave much room for argument, but luckily I have an incredibly understanding husband who was happy to accommodate my need to flee. Roughly a year later I was, indeed, in the Dominican Republic with my sister for a week of respite...for a chance to recharge.

It was an incredibly important turning point for me. It took those 3000 miles of distance from my life to realize that I had completely lost sight of who I was. That may sound all "New Age" and "fru-fru", but it's accurate. My brain was so completely saturated with the needs, desires, preferences and schedules of the kids that everything "me" had long since slunk back to the far recesses of my mind. I had to remind myself what was important to me, what made me happy, what inspired me, what my goals were. It became obvious that my success (or failure) as a parent relied on finding those answers.

I got back home and made it a priority to devote some of my time - every day - to me. I had told myself for years that I didn't have time for it. I wasn't going to accept that excuse any longer.

It was transformative. My relationship with my husband improved, my relationship with the kids improved. I found my inner jock, quickly becoming addicted to running and Zumba. I lost 40 pounds along the way. I was reminded of my love of reading. I even published a book of my own, for crying out loud! Things were definitely improved.

But burnout doesn't disappear just because you've developed a strong defense. It lurks in the shadows, ever ready to strike and envelope you in it's dark, suffocating weight once again. The past decade has been a long, exhausting series of burnout high's and low's. I've had to learn to be patient through the rough patches and thankful when I'm feeling relatively at peace.

I was particularly worried last spring. Burnout was hitting me hard, and Hannah was finishing high school. She would now be home with me. Every day. All day.

I've now had a few months to experience this new development...and I've made an interesting discovery. Time together has actually improved my level of burnout. My school-day schedule with Hannah used to be: get her up and ready for school, put her on the bus, take her off the bus, get her changed and set up for the evening [before leaving to take Maddie to gymnastics practice], then put her to bed when I got home. Each of those encounters was nothing more than chores to be completed - chores I've grown to dread over the years. My daughter had become Hannah the diaper that needed to be changed, the medication that needed to be drawn up, the medical supplies that needed to be ordered.

Now I still have those same daily chores, but Hannah is also the random giggle from across the room, the mischievous look before she throws her star rattle into the toilet, the sound of delighted glee when she knocks the dog's water dish over. It's no cure to caregiver burnout - unfortunately, there's no such thing. But that extra spark of connection with my daughter - with my little girl - that's a mighty strong stick with which to beat back the burnout beast.

Tuesday, November 1, 2016

Missing Link

You were always a soft-spoken gentleman; as a pup you didn't even chew on just nibbled shoe laces.

You were named after a video game character known for his bravery, selflessness, compassion, and kindness. Well...your bravery seemed to fall a bit short, demonstrated by your fear of...dogs. But you didn't let that timidity keep you from excelling at the ever-important duty of herding your family safely down the treacherous walking paths of the dog park. Yes, what you may have lacked in courage, you more than made up for in fidelity and devotion. You skillfully guarded your charges from day one...

...come snow, rain, heat, or gloom of night...

...for all your years.

And you warmly welcomed all new members to the family along the way, regardless of size or shape, be they the human sort, the four-legged variety or...not.

And, oh, how you absolutely dominated on the agility course. Your athletic prowess deserved so much more acclaim than you ever received. You routinely beat dogs with national standing; you could have easily been a formidable competitor in the agility world. I'm sorry I didn't give you the opportunity to shine as brightly as I know you would have.

Despite being a world-class athlete, you never shied away from helping with the mundane chores of the household. You kept me company through many a load of wash to fold, garden of weeds to pull, and yard of leaves to rake.

And now you leave us to savor the fond memories you so generously provided over the years. I thank you dearly for each and every one of them. I will miss you, my friend. You were a good, good boy.

July 10, 2001 ~ October 31, 2016 

Saturday, October 1, 2016

All About The Badonkadonk

I've never been a party girl; large groups make me feel self-conscious and uncomfortable. In college my nickname was "Grandma Steph". While everyone else was out whooping it up, I was in the community kitchen of the dorm in my robe and fuzzy slippers, whipping up cookies, brownies and banana bread. I was the best friend to those who came back from the parties with a raging case of the munchies. They'd chow down while regaling me with wild tales of celebration and smashing good times. I'd be jealous, wishing I could have shared in the fun they were apparently having...until they'd share their war stories of projectile puking and/or deathbed hangovers. My life didn't exactly feel lacking for those particular joys. Things didn't change after college, either. Workplace holiday parties and big birthday bashes for friends...they just weren't for me.

All of that changed last weekend. It started as most discoveries do - with a big jump out of my comfort zone. I learned about a huge Zumba party at my weekly Zumba class. It was a fund-raiser for breast cancer research. I decided to sign myself up, reasoning that worse case scenario, I'd just be making a donation to a good cause. Wow. I walked into the room wondering if I'd be walking right back out. I walked out two hours later, knowing that - after 46 years - I had finally found my kindred party peeps!

There were dancers of all types - men and women of all ages, skin tones, backgrounds, and lifestyles. There were folks ranging from lifelong dancers to people more like me (the overwhelming majority of my dance experience involves a vacuum cleaner for a partner). The mood was festive and friendly, but it was really all about the music. It was easy to immediately get drawn into the booming base and rockin' rhythms. There were songs of many genres (I mean...there was a conspicuous lack of smooth jazz, but plenty of variety, from Pop and Hip Hop to Latin and Bollywood). The music had me feeling everything from young and energetic to smooth and sexy to gritty and gangsta. There was probably a moment or two when I much more resembled the white-bread, middle-aged, suburb-dwelling, rhythm-less housewife I am, but... it was all good. Watching the instructors on the stage, every fiber of my being insisted I looked just like them. Besides, who cared? There were no judgmental eyes pointed my way - everyone else was just as focused on the instructors as I was.

I can't recommend Zumba parties enough. If it were a requirement for all world leaders to attend a Zumba party before all interactions, we'd be living in a world of peace, health and harmony. I mean...this party had it all. Smiles. Laughs. Claps. Hugs. Dance. Could it have been any more fun? Why yes, yes it could. When I got home my Fit Bit informed me I had burned 873 calories. Now THAT'S a perfect party!

This post is dedicated, in part, to all of the amazing instructors at last week's party, with special thanks to my instructors (past and present) Kim, Dipa and Kristin!

I also dedicate this post to Maddie's new physical therapist, Jill. A few months ago Maddie landed wrong out of a front tuck and hyper-extended her knees. Luckily, she had no complaints of pain after a day or two, but it occurred to me that now, with a schedule of gymnastics 4 days/week, she would have little to no recovery time in the event of another injury. I decided to start some preventative physical therapy for her.

In the initial evaluation, Jill discovered Maddie was having some trouble with a few moves involving her knees. It surprised me, because I was sure she had fully recovered from her hyper-extension. Jill explained (sprinkling in a lot of anatomical and technical terms I won't bother to try to remember...or spell) that the issues she had discovered didn't really have to do with Maddie's knees at all. Maddie had been using muscles in her thighs to power herself through various jumps and flips, when she should have been using core and gluteal muscles.

The pain in her knees is caused by the thigh muscles and tendons becoming so tight from overuse that they pull on the knees in certain movements, creating discomfort. It's apparently a common problem for gymnasts. She said the plan was to loosen up Maddie's thigh muscles while working on engaging the core and gluteal muscles, so it would become natural for Maddie to use the correct muscle groups when flipping and jumping. She concluded, "Not only will this help your knees to feel more comfortable, but you'll actually be able to jump better and with more power once you're using these muscles (she pointed to Maddie's bottom) instead of these muscles (she indicated Maddie's thighs). Maddie considered Jill's words for a moment and said, "Sooo...what you're saying is, it's allllll about my badonkadonk."

Yes. Whether we're shakin' it or strengthening it, this month it's been all about the badonkadonk.

Thursday, September 1, 2016

Say What Now?

The last few weeks have included a number of things I wish I had misheard, like:

From the guy driving behind me:
"Sorry I hit you; I just looked down for a second!"

From the cop:
"I'm pulling you over for expired tabs."

From the Department of Licensing:
"We didn't send you notification for renewing tabs because you have outstanding toll charges."

From the toll people:
"You have $32 in old toll charges, and with late fees that's...$1651. We sent you multiple bills. ...Oh...look at that. It appears we have the wrong billing address."

From the doctor:
"Huh. This is a curve ball. Emily's lab results are consistent with Grave's Disease. I'm sending you to our Nuclear Medicine department in Seattle..."

From the bank teller who called me:
"I notice there have been some suspicious checks cashed to your account over the past few the tune of...roughly $4000. I have suspended your account. I suggest you call the police to obtain a case number so our identity fraud department can open an investigation."


Instead of whining any more about the things we wish we had misheard, I thought I'd share a few conversations that originated from things that were misheard.

A few weeks ago Daniel and James were having a heated discussion about who is the best/most powerful of the Avengers. Attempting to get me in on the debate, Daniel asked me who my favorite is. Having no interest in jumping into the fray, I thought I'd answer in such a way that would surely turn him away. I paused for a moment (for dramatic effect), and confidently answered, "Hawkeye".

Oh, I hit a MAJOR Nerd Nerve with that one! Instead of getting the eye roll, disgusted sigh and head shake I anticipated, got an hour-long lecture about how - while there may be a few right answers to the question he posed - "Hawkeye" is the single worst, most wrong answer I could have possibly uttered.

After the lengthy tongue-lashing, Maddie turned to me and said, "Don't worry, Mom. I still love you even though Hot Guy is your favorite Avenger." Needless to say, this led to a whole new discussion about what Hot Guy would add to the Avenger team - his powers, his backstory...

As we were watching the Olympics, I explained to James that there were multiple track and field events taking place at the same time. While Usain Bolt was tearing up the track, other Olympians were participating in the Long Jump competition. Suddenly James looked at me with some degree of shock, disgust, and a touch of horror. "Uh....Mom? ....Why ...What ...H-how do they do a Long Junk competition?" Okay, most of the hilarious discussion that ensued this time was between just Daniel and I, after the kids went to bed.

Monday, August 1, 2016

So...what...these lives don't matter?

I am a self-admitted news junkie. I have my talk radio station playing in one ear from 5 AM to 6 PM Monday through Friday.

Tuesday evening I caught a breaking news story about a mass stabbing event in Japan. It was mentioned that it took place at a "facility for the disabled". There were nearly 20 confirmed deaths and many more severely injured. I was horrified at the mental image of helpless individuals being slaughtered.

I anxiously turned my radio on bright and early Wednesday morning, anticipating more detailed information about this unthinkable tragedy. I felt the only possible silver lining to such a horrid act would be the discussion it would generate. I've heard stories about various countries - including Japan - "hiding their handicapped away". That leads to the question, "What are they doing with them?" Are they in beautiful homes with gorgeous grounds, having all possible needs fully met - therapists, nurses, doctors, adaptive equipment and loving caretakers? Are they "warehoused"? Are they abused? Neglected? What's happening with this hidden population? ...Well, an event as shocking as this would surely force the country to lift their veil of secrecy, right?

So I waited with bated breath for it to come up in the news. ...And waited. I heard about the health of cloned animals 20 years later. I heard about the co-founder of eHarmony stepping down. I heard that it's hot outside.  ...But I heard nothing about the stabbings.

I thought back to last week when there was a shooting in Munich, Germany. It, too, was breaking news, but the media stayed with the story, updating us throughout the day. I think the president even stepped up to the podium, offering our sympathy and pledged support during this difficult time for our ally. Well...isn't Japan just as much an ally as Germany? Not to be crude with mere numbers, but far more people perished in the stabbings than the shooting - more than double. Yet, it didn't even warrant a mention? Is it because it has nothing to do with our fears du jour - guns and terrorism? Or is it because those killed were "just" handicapped people?

Thursday morning I listened closely to the radio once again - maybe there was just a delay on info coming all the way from Japan. Still nothing. Oh, but there WAS a report about the sentencing of a man who had killed his girlfriend's handicapped son (by pouring a lethal amount of vodka down the child's feeding tube). He apparently got a 3-year sentence, so with good behavior he'll be out in, what...18 months?

Black lives matter, blue lives matter, all lives matter. ...Except those with special needs. Them? Eh...not so much. At least, that's what the media response would have you believe. Here's the thing. I'm not upset because I think the general public really values the lives of the disabled less than those of everyone else. There are people out there who do believe handicapped people are worth less, but I'm pretty sure they're not in the majority. What bothers me is the wasted opportunity for a real (albeit controversial) ethical discussion.

The man who stabbed those 45 people in Japan sent a letter to a politician earlier this year, in which he called for the "euthanasia" of the disabled. Anyone who has read With Angel's Wings knows that I, too, pleaded with the pediatrician for Hannah's euthanasia at one point. She was living in abject misery - had been for months - and there was no anticipated recovery on her horizon. Did this Japanese man (who was a former employee of the facility he attacked) know something about the lives and/or living conditions of the people he killed...something we should know? ...Or was he just suffering from his own mental illness (in which case: Oh, the irony!)?

Those who have read With Angel's Wings also know that Daniel and I both nearly took matters into our own hands at various points, when we felt we could no longer bear watching Hannah suffer. Was the "vodka killing" a similar case of a heartbroken and desperate family, or was it the actions of a cruel and heartless murderer who didn't want to be "saddled" with the responsibility of a special needs kid? Again, it's not the seemingly "light sentence" passed down in the case that bothers me. After all, who could better relate to the anguish that possibly led to such drastic measures? What frustrates me to no end is that yet another perfect opportunity to voice the angst and agony of many special needs families has - again - passed us by with just the briefest mention in the headlines. I'm saddened that we lost out on the chance to discuss the desperate need for family support and respite care.

The "Lives Matter movements" seem to be a mixed blessing, at best. They feed into the sensational nature of modern-day "news", thus fanning the flames of hate spewed forth from the ignorant and bigoted (from every side of the equation). But they have opened very important lines of communication previously left unspoken - a necessary first step in gaining acceptance, healing, and healthy relationships. Well, if a mass stabbing and a killing by way of vodka can't garner some sort of conversation, what will it take to allow the special needs/handicapped/disabled community an opportunity to speak up and speak out about their reality of daily living? About life after the 20-week premie, the car accident survivor, the military veteran and the near-drowning victim live due to the "miracles" of modern medicine...but are left needing constant care for the rest of their lives. About the families faced with extraordinary challenges in an attempt to provide that care? Lives matter...but not just lives. Quality of life matters. ...And that's worthy of discussion.

Friday, July 1, 2016

The Great Mommy Race

Parenthood is a competitive sport. I invite anyone who doesn't agree to sit in on a toddler play group and just listen for a few minutes. I guarantee phrases like these can be heard at any given time: "Oh, Johnny is still sleeping in a crib? Well, we got our little Susie, here, transitioned to to her big-girl-bed by her first birthday...AND got her to give up her binkie." "'re having trouble with potty training? [insert practiced look of supportive pity] Yeah, we had Jane completely out of diapers before she was 2. It took some time and effort, but life is SO much easier now that diaper changes are behind us [insert practiced genuine-looking smile and light chuckle to camouflage the shameless dig at the other mother's obvious inferior parenting]."

Awhile ago I was gifted a parenting self-help book, instructing us how to raise "almost perfect" daughters. After months of looking at it sitting on my table, I finally picked the book up. I agreed with a few points, disagreed with many points, but most of all, I was surprised by the intensity of my emotional reaction. It began before I even lifted the cover...with fear. 

A lifetime ago, I approached parenthood with all of the typical dreams and aspirations of a first-time mom. I would breastfeed for a full year, then I would make my own baby food with organic ingredients. I would be home to assist with homework and to make cookies. My kids would know how to properly fold a shirt...and a fitted sheet. I would be actively involved with whatever extra curricular activities my children chose. I would become president of the PTA.

Then Fate or God or The Powers That Be stepped in and threw a monkey wrench into all of my carefully thought-out plans by giving me special needs children. I love my kids fiercely, but - even now, 23 years later - I still mourn the motherhood journey I expected, the one I craved. I feared reading the self-help book would be a painful reminder of all that my life doesn't include. Truth? It did just that. It started off in the introduction, where the author stated, "It is my deepest belief that if we spend more time nurturing, focusing and guiding our children...we would have more daughters who are ("almost") perfect."

Well...I certainly can't be accused of not putting in my time, effort, blood, sweat, and tears (lots and lots of tears) as a mother. For me, though, that didn't - and never will - produce the successful, contributing members of society the author seems to claim will result from a little extra "parental elbow grease". That's because the [faulty, in my opinion] underlying assumption of the book is that, as parents, we all start off on equal footing. She stated, for instance, that good grades are an important indicator of good parenting and that extra time and effort tutoring will lead to our children earning the "A" (and occasional "B") grades we strive for (just like her two daughters did).

Nope. My oldest daughter (23) has high functioning autism with mild to moderate developmental delay. Forget A's and B's; we've been working hard for months on the life skill of grocery shopping...and I assume it'll be at least another few years before she'll have that skill down well enough for independent shopping...if we reach that goal at all.

The author went on to say that with proper manners, morals, and education, our daughters are sure to become the person everyone around them "can't help but love" - just like her daughters. Wrong again. My second daughter has a rare genetic disorder. It doesn't matter what I could ever teach her about social skills or manners. She will never be someone "everyone can't help but love". She's a 50-pound 20-year-old who is non-verbal, non-ambulatory, exclusively G-tube fed, and incontinent. She has the cognitive ability of about a 9-month-old and a seizure disorder. When most people see me rolling her up to them in her wheelchair, "uncomfortable" is the general reaction. It's just a fact of our lives.

In the "Great Mommy Race", I'm the runner with a prosthetic leg who finishes the marathon last. I FINISH, and I'm PROUD...but even though I'm working just as hard (or harder) than the first place finisher, I will never, ever win. Ever. That truth hurts sometimes, but then I pull a Taylor Swift and Shake It Off. My kids may not be "(almost) perfect", but there are so many reasons to be proud of them. Over the years they have blown me away with their strength, courage, heart, and grit. My oldest daughter may not be able to spell her way out of a paper bag (good spelling is mentioned in the book as a trait of almost perfect daughters), but she wrote a tribute to our recently deceased cat on Facebook that brought me to tears. She has a beautiful, loving soul that ANY mother would be proud of.

I applaud the author for apparently raising two beautiful, successful young ladies. I'm truly happy for her. I also understand that competition between parents is just a natural part of the human condition - as is judgement. I just ask parents to remember two things before letting loose with their scathing assessments of the "less successful" parents around them. First: even when it's obvious that we're not on the same playing field, we still feel the loss of never being able to win your have some compassion. My 20-year-old just "graduated high school" a few days ago. Clearly people aren't going to look at her in her wheelchair and judge my parenting because I don't have her college acceptance letters to proudly wave around. That doesn't mean I don't feel the absence of them in my hand. Graduation day was just another day for us...except for when I wheeled her off the bus and discovered her diploma discretely tucked away in her bag. I surprised myself with a cry - the slobbery, blubbering type, where you drop to your knees and emotionally vomit until your eyes burn and your throat is sore from your silent wailing. I pulled myself together and moved on just fine, but my thankful thought for the day was that she isn't aware enough to have any interest in things like graduation ceremonies. I don't begrudge all the beaming, happy, proud parents out there with their successful grads...but I don't relish the idea of sitting for hours, hearing about all of their amazing accomplishments and bright futures, either.

Secondly - and maybe most importantly, every parent is not equipped equally. Be proud of that straight "A" student of yours - you have every right to be! I'll be over here in an exhausted puddle on the floor, breathing my huge sigh of relief that with all of our guiding, cajoling, demanding, helping, pleading, and encouraging this year, our ADHD/dyslexic 7th grader squeaked by without a SINGLE "F" on his final report card. Heck, he even got twice as many "C's" as "D's" - I'm feeling like Mother of the freakin' Year right now!