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. ...

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.

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." "Ohhhh...you'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 game...so 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!

Wednesday, June 1, 2016

My Second Base Moment

One of my all-time favorite movies is Parenthood, starring Steve Martin. One [of the many] iconic scenes is about a dad's imaginings of the life-altering, long-term consequences of encouraging his son to play second base in a little league game.

Parenthood - Playing Second Base Clip

I was reminded of that scene last week. I am helping my 13-year-old son prepare for a hopeful spot on his middle school cross-country team next fall. We discussed the decision at the beginning of the year, and I emphasized the fact that if we were going to do this, we were going to be giving it our best effort and we'd be seeing the project through to the end. He agreed. Absolutely. Well, the first lesson he has learned is that it's pretty easy to say, "I'm committed," but when it comes to getting out onto the road to run two miles three days/week, rain or shine, cold or hot, weekday or weekend - even if his best buddy, Andrew, is staying for a sleepover - it's a lot easier to become the Emperor of Excuse, the King of Complaint, the Wizard of Whine than it is to commit. I've done my best to hold him to his promise, while making every effort to keep this whole process as fun and enjoyable as possible. I sometimes even impress myself with my cheer-leading energy and enthusiasm... although I fear my encouragement - seen through his eyes - may be interpreted a bit differently...

The other day was one of our more difficult training sessions. It was a Thursday. He was scheduled to run on the previous Tuesday, but I wasn't home. He said he ran on his own, but I'm as certain as a mother can be (shy of having video footage to back me up) that the only thing running that afternoon was his mouth as he talked on the phone with Andrew while playing video games. With that in mind, there was going to be no negotiation about Thursday's run. We were going to run and we were going to run hard. Period. I was ready to go by 5 PM. James requested we hold off until 6 PM. I reluctantly agreed, because I knew I was going to be pushing him to his limits and I wanted him going into the run with the most positive attitude possible. Best laid plans...

By 6 PM our overcast skies had progressed to a light rain. Determined to keep an optimistic mood, I said, "That's okay, buddy; rain is just all the more reason to run fast and get back to the house as soon as possible, right?" He wasn't responding to my chipper tone quite as I had hoped. He moped his way through our 1/4 mile warm-up walk and asked if we could have just an easy jog work-out. "Nope," I said, "We're going to do our best to beat your fastest finish time from last week." Beginning to get irritated with SeƱor Spoil-Sport, I added a little more forcefully than I intended, "Besides, I'm cold and wet and ready to just get back home as fast as possible. If we had just left at 5, like I wanted, we'd be dry and comfortable right now! Come on, buddy; let's DO this thing!"

As if on cue, it began pouring as we began our run. Annnndddd...almost immediately James fell behind. I fumed my way through the first mile. I was cold, soaked, and miserable, and for what? Our training was getting us nowhere at the slow pace he was running.

I got to the half-way point and waited the minute to minute and a half it took him to catch up to me. I considered laying into him then and there, demanding he step it up. I opted to keep my mouth closed and simply start running back toward the house. By the time I got home I couldn't even see James behind me anymore, but was feeling pretty proud of my own performance. I wasn't timing it, but I'm PRETTY sure I was at an Olympic pace by the last tenth of a mile.

In the two to three minutes I sat at home, waiting for James to get back, I considered how I'd handle the situation. After running off some of my irritation, I no longer felt like exploding in frustration. Should I play it cool and say, "Hey, we all have off days. We'll just run again tomorrow to make up for it."? Should I launch into a lecture on commitment? On "manning up"? On performing out of respect to your coach/mentor/teacher/parent, even when you don't feel like performing for yourself?

I didn't get the chance. As he walked through the door, he said, "Wow...I learned a BIG lesson with that run today, Mom."

"Oh yeah?", I asked skeptically, "And what lesson might that be?"

"I learned that you feel really good when you push yourself and just keep going, even when you want to quit every step of the way. I wasn't feeling good - my head and stomach are bothering me - but I kept with it, and I was able to finish the run, even though I didn't think I'd be able to."

Hmmm...clever, clever boy. Beat me to the punch and spout off some inspiring story that allows no opening for lecture. Okay. I'll play along. "Well, good, buddy. Even if you didn't beat your finish time, at least you got a lesson out of the run." I figured I'd wait until the next day to drop the bomb that we'd be running again to make up for the day's poor performance.

Wellllll...the next day came...with James sporting full-on cold symptoms. It turns out, there JUST may have been some validity to his whining about not feeling well the day before. Cue the Mother's Guilt - Extended Release, Extra Strength Formula. All I could imagine was James as a young adult, explaining to his therapist how I never listened to him - that I made him run out in the rain, even when he was at death's door with The Worst Cold Of The Century.

I was offered a bit of hope on Monday that all might not be lost. On Sunday James expressed concern that he wouldn't be well enough for school, knowing that the state standardized testing was scheduled to start Monday morning.

I was relieved when he went to school the next morning with minimal whine or complaint. When he got home from school, he came through the door saying, "Hey, Mom, remember that lesson I said I learned the other day? Well, it worked again. I was still feeling really sick this morning, but I got out of bed, anyway, so I wouldn't miss the testing. It wasn't fun, but I got through it. The thing is, though, Andrew has the same cold I do...and HE stayed home. I guess he hasn't learned that sometimes you just have to do things - even when you don't feel like it."

Okay...maybe I'm not scarring my kid for life by making him run...in the rain...when he's sick.

A few shots from a charitable 5K race we ran together a few years ago...I was so proud!

Sunday, May 1, 2016

Your Whine List, Madam

A few weeks ago I was following my 9-year-old out of a gym after her gymnastics meet. She yelled some random complaint over her shoulder in my direction. Her coach happened to be walking next to me. She cocked her head to the side a bit, narrowed her eyes, and said in a knowing tone, "Oh...I recognize that whine." As we happened to be on our way to a restaurant for dinner, I began to imagine a whine list - one that could be perused, scrutinized, and appreciated by the discerning parent, coach, and teacher connoisseurs of the world...

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.

~*~ Malbec-Off ~*~

No cellar is complete without the versatile Malbec-off ~ a generally malcontent, argumentative, and ornery blend. Often paired with a sibling, but never with a nap, this classic will test the patience of even the most experienced whine collector.

~*~ Tempranillo Tantrum ~*~

This austere, full-bodied offering must be appreciated with restraint. What can begin with just a hint of temper on the tongue can quickly escalate to a rich serving of tantrum on the palate, with undeniably red hues and flailing extremities. Best paired with a sense of humor, a 6-pack of beer, and a sympathetic fellow whine enthusiast.

~*~ Boredeauxm ~*~

A fine vintage, often enjoyed at the most serene, peaceful tables. Typically coupled with frustrated huffs and theatrical eye rolls. Best paired with a list of chores that will counter even the most dramatic declarations of boredom.

~*~ Champagne Brute~*~

Typically sporting masculine undertones, generally paired with a younger sibling, and with a distinctly bruised finish, this vintage should be sampled in no more than sips and with much caution.

~*~ 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.