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.