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 shoes...you 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.





Link
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 days...to 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."


SERIOUSLY?!


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.




Tuesday, August 9, 2016

#RRBC Book & Blog Party Stop



Hello! A huge Pacific Northwest welcome to you all! I'm Stephanie Collins, of Kirkland, WA ~ a busy mom of four, loving wife, former pediatric nurse, and unsuspecting author of the memoir, With Angel's WingsThanks so much for stopping by! Please enjoy, and - if you leave even a 1-word comment at the end - you might just find yourself the lucky winner of the single $50 Amazon gift card I'll be awarding to RRBC's randomly chosen visitor. Thanks again, and good luck!  :)


A few weeks ago,  I was asked by a listener of Blogspot Radio's Buy The Book what a typical day in the life of a mother to four children with special needs is like. Whew...talk about your loaded question! As it just so happens, in addition to writing With Angel's Wings about my introduction to and initiation into this "lifestyle", last year I started this nifty little blog to answer that listener's very question. Here's a sample of what life in our house includes these days, in the way of clips from previous blog posts. Enjoy!  :)


There's lots of practiced patience in our house


There must be a full moon or something. I was seriously considering "Sonocide" the other day, too. It wasn't the mile-long list of overdue school assignments I found in his backpack that morning...OR the log he decided [for who knows what reason] to throw through the shed window around noon. I remained REASONABLY under control when he later BIT his sister in a fight over a LEGO...and I breathed through the overdue library book e-mail I got that evening. But when I went into the bathroom that night and had to YET AGAIN tell my nearly 12-year-old son to get his butt BACK in there and WIPE AND FLUSH - that was the moment...that was it. Oh, and it wasn't some fancy-schmancy visualization technique that spared him. My son is alive today because the Seattle Seahawks won their game. Russell Wilson doesn't just visit kids AT Children's Hospital - he and his team now apparently help to PREVENT kids from even getting admitted.


There's lots of awkward conversation

In Text form:

3:50 PM Emily texts Laura: "Hey, so you know that Jeffrey and I have been hanging out and so on. If you were worrying about the whole first time thing, it has already happened and it was fine, and it was my decision, and I was ready and I'm happy with my choice and that's that."

Laura: "OK"

3:51 PM Laura texts Daniel: "Holy crap...I just got an "I-just-had-sex-for-the-first-time" TEXT! What the Hell are we supposed to do with THAT?!"

Daniel: "WHAT?! How...where...whaaatttttt?"


Laura: "They took the bus to his mother's house in the middle of the day, so she was still at work. They're mentally teens, but they have the freedom of adults in their 20's. Ugh!!!"


And in the spoken word...face-to-face (...where keeping a straight face is particularly challenging):

Laura: "Hey, so...I'm a little confused. You told me a few days ago you and Jeffrey had no plans of a physical relationship beyond maybe hand holding for at least awhile. Looks like you changed your mind?"

Emily: "Yeah."

Laura: "Soooo...sex...was it better than you thought it would be? Worse? About what you expected?"

Emily: "Um...better? I guess?"

Laura: "I guess that's good, then. Were you using protection?"

Emily: "Yeah. He didn't have any, but he made one."

Laura: "Oh...and how did he do that?"

Emily: "With a rubber glove."

Laura: "...Oh...guess we'll be getting you some condoms to keep with you. ...So...what made it better than your expectations? Did you orgasm? Did he?"

Emily: "I have NO idea."

Laura: "Okay...well, you didn't, then. What about Jeffrey?"

Emily: "I don't know. How would you know?"

Laura: "Well...when he took off the rubber glove, was it wet or dry?"

Emily: "Dry, I guess."

Laura: "Okay, then. Jeffrey didn't orgasm, either. So...what made you decide to stop, then?"

Emily: "I don't know. We were just tired and decided to cuddle, instead."


There's head-scratching dealings with state agencies

We had a brainstorming meeting, so we could best determine an appropriate job for Hannah. I looked around the room at the 8 individuals [who were all paid by our tax dollars in one capacity or another]...sitting there for over an hour, discussing what job would be best for our "potential employee".

Group Leader: What is Hannah best at?

Me: Sitting. She can sit independently.

Group Leader: What does she like to do best?

Me: Sit in the sun out on our deck.

Classroom aide: She also likes to splash her hand in water.

Group Leader: So she'd do best to work outdoors, ...possibly with water...

Jobs Program Representative [spoken with a straight face, in all seriousness]: I've got it. I think we should look into Hannah working at a recreational marijuana growing facility. She could water the plants.

Meeting adjourned.



There's rough days
(from "Uh...Sh*t Just Got Real", August 2015)

I checked back in with the paramedics. As I feared, the rescue med had done nothing to slow the seizure down. They were preparing a second dose. I held Hannah's hand, offering her words of encouragement that were more for me than her. The second dose wasn't touching the seizure either...but her respiratory status was plummeting. The paramedics were placing an IV; I stepped away for a minute to make the call to cancel tutoring. When I returned, the paramedics were grabbing more supplies and one said, "She's really struggling to breathe here and her respiratory rate has dropped dangerously low. We're going to intubate."

"Wait! ...You um...you can't! ...We have DNR orders. Oh, God...we...we have DNR orders in place..."

"Do you have a copy with you?"

"No. I was...um...I was on the roof when I got the call. I didn't think to go into the house to grab her paperwork."

"Well...if we can't intubate, we can't do anything else for her here. Let's get her over to the hospital." They began preparing to move her into the ambulance.

I was back on the phone with shaking hands. "Hon? ...Uh...Shit just got real... They need to intubate and I had to tell them to stop. I wasn't ready for this today..."

"You want me over there? I can be there in a minute."

"No. Ummm...we're...we're headed out to the hospital, anyway. I just...I just... I don't know. I wasn't ready."

"You can tell them to go ahead and intubate."

"...No...I think we made the right decision...I just...this wasn't supposed to happen today."

"Right... I love you. Keep me posted. Keep breathing. Give her a kiss for me. It'll be okay. You're doing a good job, hon."



There's gymnastics being practiced...
(from Gymnast or Gym Rat?, October, 2015)

...while doing everything, whether it's reading...



...or watching t.v. ...
video



There's considerable comic relief (thank goodness)
(from Salvation In Smiles, December 2015)



(and from Your Whine List, Madam, May 2016)



Whine List


~*~ Chardonaysayer ~*~

A prime vintage, with a turned up nose, dry palate and frustrated finish. This classic "no" whine is a staple of all cellars, often the first whine to touch the lips of even the most amateur enthusiast. Best paired with a practiced count to ten and a fine choosing of battles. 

~*~ Sauvignon Blanc Stare ~*~

Another cellar staple, this whine features a complete lack of homework completion. Often paired with a poor excuse, this gem can occasionally include the surprising bouquet of a unique, imaginative explanation that leaves an unexpected smirk on appreciative lips and can conjure fond memories of excuses of yesteryear.

~*~ Merlot But Never Enough ~*~

Likely the most versatile and common selection of any cellar. No matter how generous the offering, this whine always wants a lot more. It is most often consumed in the toy isles of department stores and processed snack food isles of grocery stores. Generally paired with copious crocodile tears. Best appreciated with an unyielding will of steel.



But most of all, there's love...
lots and lots of love!






Thanks, again, for stopping by! Enjoy the rest of your day!  :)  ~Stephanie

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.