Archive for the ‘life’ Category


Don’t normalize President Elmo. Just because he can only count to five doesn’t excuse the poopy news he puts out. Granted, while being a poopy doody head explains some things, it doesn’t excuse anything.

 

I have my 17 year old daughter to thank for this. I really had no choice but to share the laughs. Imagining Trump as a spoiled toddler most days is a coping mechanism and then here comes Elmo. 😀 I’m dead.

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It’s apparently breaking news as of last night? by the New York Times that Donald Trump knew two weeks prior to his inauguration that Russia interfered in the election in order to make sure he would be elected; with the express permission and direction of Dictator Putin. He knew that it was done so that the election would turn out in his favor. Every single time he has said he didn’t believe there was election interference, he lied. Every time he has said there was, “No colluuuuuuusion,” it was a lie. Every time he lies, it’s obstruction and for that matter, a cover-up.

If you’ve followed or read my blog for the past two or three years, you know that none of this is breaking news to me. Maybe some of you thought I was a little paranoid. 😉 That’s okay. Plenty of people don’t listen to anything I say, thinking I don’t know what I’m talking about. I’m used to it. I live in Connecticut, after all. I mean, we may bleed Blue for the most part but we also just had a guy on a dairy farm just get kicked in the head by a cow. And the news anchor had to make sure to say,

“He did suffer serious head injuries, but no information on his condition.”

Yes, he would since he was kicked in the head by a cow. Being in his 20’s wouldn’t keep him from avoiding serious head injuries.

I wish I could say that the things that have been leaking out, and the indictments, subpoenas, plea deals, have been vindicating. The problem is that we’re still stuck with a treacherous guttersnipe in the Oval Office. The problem is that I didn’t want to be right.

I never, ever wanted to be right. I wanted to be proven wrong. I want every single elected official we ever have to succeed, especially a duly elected president. Hell, even a president that was inserted by Russians… I was in a position where I felt forced to “give him a chance.” I wanted him to succeed. I promise, that’s the truth.

Giving someone a chance doesn’t ever mean ignoring the truth. It doesn’t mean ignoring what you already know about someone. It means giving someone a chance with a healthy skepticism and a willingness to continue to ask questions and research and fact check in order to protect yourself and others.

Investigating the election fraud and other crimes stemming from it isn’t about, “being unable to let go of Mrs. Clinton not winning the election.” It’s about the undermining of our election, our democracy, our Republic and the fact that one of the candidates in the election… the candidate that did end up in the Oval Office… was part of the tampering. He encouraged, took part in, and continued to take part in espionage.

I think the scramble by the White House, Sarah Huckabee Sanders, Lindsey Graham, hell even Sean Spicer to rehabilitate Trump’s current Russian joint presser statement into something means the opposite of what he actually said is a clear indication that he meant what he said. He has always said that he doesn’t need or want other people to explain what he says because he always says what he means. And that presser? That was clearly scripted. He knew what he was saying. He was proud of himself. He was smug. The damage control is something that I’m sure Trump doesn’t even believe needs to be done.

Again… he’s told us who he is, so why don’t people believe him when he shows us?

This is not Democratics vs Republicans vs Independents vs Green Party. It’s about willingness to side with truth and justice, patriotism and America, or willingness to side with a traitor and not care about the lies and treason in favor of a larger, damaging agenda. It’s also about voting vs non-voting.

At this point, it’s also about whether people are reformed Trump voters. I’m not touching Republican, specifically because I know people of all political affiliations voted for him. I’m not touching GOP either. And yes, I’m making a very wide line between Republicans and GOP. Because the GOP has become the tool of the Tea Party. What Conservative stands for now is a warped stance of conservativism. I’m a recovering Republican, so I know. I’m heartbroken over what’s happened to the party as a whole.

That’s a whole different blog entry.

I don’t have hard feelings for the voters at this point because voting has been effecting change in special elections everywhere. I also have hope for November 2018 midterm elections. I believe that most people are good. I believe that people vote with hope in their hearts.

There’s still hope. We have a free press and freedom of speech. The First Amendment is our most important Amendment of all. Which reminds me, if you haven’t already, download a free copy of the United States Constitution. It’s so, so very important. It’s law that’s higher than the Oval Office.

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Backstory, I Hope I Can Keep It Short

I’m likely going to oversimplify things; warning that I’m only providing one article source below, and it’s in reference to my last paragraph. Also to warn you, I’m in MASSIVE pain right now, because it’s raining and all of my meds have completely worn off. Every single one. I’m an hour late and just realized it. Please be gentle in your critique. No, just kidding, discussion is welcome.

A few weeks ago, Trump was puffing his chest like an old gorilla, insulting anyone he could including previous presidents as far back he could pronounce their names.  He was worked up because he needed. a. big. win. and it just had. to. be. North Korea. You probably remember the drama unless you were lucky enough to be stranded on a tropical beach without any wi-fi, data, or cable access to anything for two or three weeks. If you were stranded on a beach, you’re lucky.  There was so much propaganda in both countries, it was sickening. Guess which ones in the U.S. fell for the Trump propaganda and disinformation campaigning? I’m not even talking about anything aside from NK. Did you know the WH even put out a VIDEO touting the awesomeness of NK? It’s like a tourism video, carefully ignoring the fact that the dictator is a murderous serial killer who even had his own brother killed, and imprisons anyone believed to speak out against him? Who will murder entire families for the actions of one citizen that he believes could have betrayed him even in their thoughts? A dictator who is guilty of countless inhumane acts against his own people, is so genocidal, many consider him to be as evil as Hitler. Remember that.

Anyway, the closer we came to the meeting date, day by day, minute by minute, the propaganda, rhetoric and hype were at the point that (some) people believed he was going to NK to save the U.S. and save the entire world from certain, immediate annihilation. Some people here had the audacity to believe Trump was going to save the North Korean people with the fabulous deal he was going to make with their dictator. His personality alone would overpower Kim Jong-un and if not, then his business expertise would do the trick. None of the U.S. leaders for the past 70 years, Trump’s entire lifetime, would be able to live up to what he was about to accomplish. The world was just waiting for him, apparently, and didn’t know it. Oddly enough, Trump wasn’t interested in learning anything about the 70-year history of severe problems that not only the U.S. has had with North Korea, but the world.

Trump started complimenting and praising Kim Jong-un. I just can’t even … even with that one.  You don’t do that.  Don’t compliment a dictator on his leadership skills.  He stopped tough talking and started courting. Remember what I said a couple of paragraphs ago about Kim Jong-un.

Caution and Education Are For Sissies, Apparently

There were a lot of concerns moving forward, though, as you would expect.  There should have been vocal concerns considering the magnitude of the summit.  There are always going to be security concerns when any of our delegates and officials leave the country for something official. Like, say, the G7 Summit. Wait.

There are always red flags to pay attention to, some that even lay people know are serious.

The quotes that were given to the state-run propaganda news outlets in NK by Kim Jong-un weren’t a big enough red flag; they were largely ignored in the U.S.

The warnings from the Intelligence Community that no matter Trump’s stated goals, Kim Jong-un’s goal is to continue developing a nuclear arsenal and to embarrass Trump (among other warnings) weren’t a big enough red flag and also largely ignored in the U.S. This was a moment where you have to say, just like during Trump’s presidential campaign when he told and showed America who he is,

“The man has told you in clear language what he will and won’t do. This is a man who has consistently behaved in an abhorrent manner without plans to change. Believe a man when he tells you and shows you just how much of an asshole he really is.”

It was big news in the U.S. if you were voicing concerns; to be cautious; if you had doubts; if you were suggesting to please study up on the North Korean History, Mr. Trump, just please educate yourself. The fact that such concerns were being minimized and denigrated by the White House was a red flag.

Of course, it was also big news that Trump refused to study up on the past 7 decades of North Korean dictatorship, and ignored that advice from advisers. Red flag? Maybe?

Anyone with any sort of intellect and knowledge about world history and U.S. history would have anxiety, doubt about this summit’s long term and short term results; anyone paying attention to current events would be concerned and doubtful just in a general manner. Anyone with a passing knowledge about Trump and his history of getting along with everyone no matter what it takes, plus his sparkling personality and confidence, would have concerns about the immediate issue of the meeting itself. The fact that nothing changed in Trump’s attitude on this subject was a huge red flag.

Now we segue.  If I don’t I’ll go on a tangent.

I Concede, You Concede, Gentlemen’s Handshake

Trump and Kim Jong-un met, pretended to be brahs, while each also pretended to be the alpha gorilla.  In the end the dictator won.  It was described as an exchange of opinions and how to reach peace between NK and the rest of the peninsula.  Trump committed to “security guarantees” as Kim Jong-un reaffirmed his “firm and unwavering commitment to complete denuclearization of the Korean Peninsula.” I’m noting just how carefully worded that is. Kim Jong-un wants the peninsula denuclearized. It doesn’t state specifically North Korea. Maybe I’m nitpicking but it’s red flaggy to me.

The establishment of new U.S.-DPRK relations will “contribute to the peace and prosperity of the Korean Peninsula” (oh yeah and of the world too, but let’s not specifically state America). Apparently our new relationship alone will be enough to contribute to peace and prosperity.

They recognized that “mutual confidence building” [Okay, wait a minute, when I saw this one I wanted to know: Does that mean ass kissing?] can promote the denuclearization of the Korean Peninsula.  Neither of these men are known for doing what anyone else tells them; for upholding promises; for building confidence with others.

President Trump and Chairman Kim Jong-un talked about releasing POW’s and MIA’s remains to their families. Thumbs up, Big Guy. As with our most recent President, we’re continuing the trend of bringing our people home.

Building a last peace REGIME on the Korean Peninsula. Like the wording on that one? Red flag, maybe? For there to be true peace in Korea, for them to be a United Korea again, I can only imagine that South Korea would insist that a dictatorship would have to be dissolved. I don’t see, especially in wording such as that, that Kim Jong-un intends to release any of his political power or his nuclear power. He holds the cards as long as he holds and can make nuclear weapons.  The world will pay attention to him as long as he holds those cards.

There was nothing resembling a peace treaty that could be worked with,  in depth, to be further fleshed out, endorsed by Congress, and signed.  With no actual peace treaty and nothing for Congress to flesh out, mark up with red pens, approve, and have both nations sign, we have nothing except the fact that these guys sat down and had dinner together.

They outlined, sort of, some loose goals signed by them as an intent to work on the goals; but it’s nothing binding.  Nothing.  If there had been, he’d be complaining about Democratics holding up the process of saving the world.  Instead he just complained that Democratics and haters didn’t want him to save the world and want war and open borders. Distraction at its worst. He’s not even good at it.

Anyway.

Trump essentially came back to the U.S. from the NK Summit with the equivalent of chicken scratch on a bar napkin.  He managed to convince his base that it was binding and wow! a peace treaty! and he managed to do something unprecedented never ever before accomplished by any U.S. leader ever.  Obviously anyone who has a passing relationship with reading American History or Google knows that particular claim is a lie.

I’m not going to lie: sitting in a meeting face to face with Kim Jong Un, a ruthless, vicious, mass murdering, genocidal dictator takes a serious game face. It is an accomplishment, especially considering this dictator is considered to have been (until recently) reclusive. The problem is that because Trump wanted to teach this punk a lesson, one thug to another thug, and he legitimized Kim.  I really do wish he had intimidated Kim Jong-un into submission.  That would have been a great accomplishment.

But there’s history to consider, hence the mother hen worrying and caution:  Kim Jong-un recently fucking over South Korea and China weren’t big enough red flags, I guess.  The thing is, I never want to be right when I have this kind of anxiety.  I really don’t want our government to fail.  I don’t.

Then this happens.

Plot Twist. 

I wonder if sprucing up their nuclear facilities to be more productive for, oh, I don’t know, producing nuclear weapons will be a big enough red flag that the summit itself was a failure.  Because lookie what I found:

 

Satellite images from last week show that North Korea is making numerous improvements to the infrastructure at a nuclear research facility, according to a new study.

Article by Avery Anapol; 6/26/2018; Source: Satellite images show North Korea upgrading nuclear research facility: report | TheHill

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So Many Mistakes

My intention here: this is not a “poor me” or “poor mom who has an autistic teen” post. It’s about owning up to past behavior that I think seeps into the present even though my ego would like to believe that it doesn’t. I know for certain that it does, though, from a recent wake-up call. I was having a conversation with someone elsewhere online in which I was commiserating and agreeing in the conversation as a fellow disabled person, but due to how I phrased something it came off offensively rather than in a supportive way.

Reblogging this below entry is “looking back at my mistakes, and wanting to make amends” post. Some of it I’m working out “out loud” in an effort to keep other parents from making similar mistakes that I made way back when and still make in spite of myself.

It’s been about eight years since I wrote the below entry. I was so excited because I jumped in feet first into being a parent that LISTENED versus one of those parents who pitied being a parent of an autistic child. I had turned my back on Autism Speaks and others of their ilk. I was speaking for my daughter, but it still came out with my voice. I came off as so. damn. smug.

I know now that my voice and approach came off as if I were speaking above autistic voices; as if I were an authority over them. That was wrong of me.

I placed myself smack in the middle of the Autism community, thus elevating my voice, as a parent. When I described the community as a whole in this post, I placed autistic voices first, but then I added everyone else and they all added up to be More Than the autistic voices. That was wrong of me.

Autistic voices should always, always be first. But this is what the rest of us forget: Autistic people ARE the community. The rest of us who are lucky enough to be in their orbits are only on the fringe of the community by virtue of their invitation by note of; their patience in answering questions; their love for us; their self-advocacy; their opinions about what doctors, therapists, teachers, scientists, agencies, and parents say and do; their personal stories about childhood, employment, relationships. It’s up to us to earn trust because it’s so easily broken. I hadn’t really learned that completely yet.

Sure I’m A Mom

As a mom I’m not even an authority on being a parent to someone who is autistic. Why not? I’m just one mom to one autistic daughter. I may have some insights as a mother, based on a learning curve, but almost all with thanks to listening to the real authorities: autistic bloggers, writers, authors. I may be a near-expert on my own daughter because she lets me in and I ask her questions and let her lead. I pay attention to her communication. I learned that imperative lesson from other autistic people who wished their parents had done that for them; and those whose parents did do that for them. Thank God for them.

My daughter was only seven-ish years old at the time that I wrote that entry. I’d only been following blogs written by autistic writers for a couple of years but in regard to autism, not exclusively. I hadn’t yet figured out how the different language issues were layered yet, and which other issues were severe social and family issues. I didn’t know how serious abuses were yet. I didn’t realize I could trigger someone with a careless word.

Implied Privilege

When I wrote that blog, I was listening to autistic voices but I didn’t necessarily hear them all of the time. I ‘m afraid I made the wrong issues more important than the people.

Worse, I used the privilege implied in being a parent who was researching and listening, albeit not hearing, to be heard and to advocate in a way that I thought was appropriate. Instead I sounded smug. I can only hope that I never passed along dangerous information in that manner. When I come across posts where I think that might be the case, or it’s borderline, I have and will either update or delete them. I don’t want to perpetuate harmful information and I’m sorry for that.

When I stumbled on this post again, it really embarrassed me. It embarrassed me because even though it was eight years ago, I think I still use the tone in it without meaning to do so. I also know that for some people, my sentence structure and grammar can come off as snooty and boy… is that evident in this post I dug up. I was going to either delete that blog entry, or update it. I’m a big fan, 98% of the time, of taking complete responsibility for something posted and leaving it up for posterity with the hope that someone can learn from my mistakes and hopefully see a progression from ignorance to, well, I guess “less ignorant.” More enlightened is my goal.

I chose to leave this one up because it represents a journey, and updating it or deleting it would have ignored the work our family has done to grow.

 

I Apologize

I’d like to apologize to autistic people for my ignorance, past and present. I may have learned things over the years that helped my knowledge, but not my pride. I’m sorry that over the years, I’ve spoken over your voices or in place of your voices as if I were more of an authority. I’m sorry that my hubris got in the way of my humility. Please know that it’s not something that I ever intended. Please know that I’m always open to hearing where I’m making mistakes, my language is inappropriate, my education is outdated. I want to succeed more often than not. I want to continue to work at self-improvement, open-mindedness, humility.

Intended or not, it still happened. I take full responsibility.

I hope that you forgive me.

 

From Harmful to Helpful?

How do I become more helpful to the community (including other communities) I want to advocate with?

  • Be mindful of past mistakes and current behavior
  • More active listening on my part
  • Listen more than speaking; this really is important, so much that I just said it twice
  • Don’t place my voice as an authority in a community in which I’m really only orbiting
  • Ask more often, “How can I help?”
  • Give credit where credit is due
  • Provide qualifiers when speaking such as, “In my opinion” and “In my experience”
  • Remember that plain language, not rude language, is appreciated
  • Remember that it’s not simply advocating FOR… it’s advocating WITH because
  • Go out of your way to make sure the people you converse with know that you
  • Those who have the disability that you don’t have are also self-advocating as a whole and for others in their group who may not be able to self-advocate

 

I know that as a parent, as a woman, I’m going to continue making mistakes because I’m not perfect. There are thousands of mistakes I haven’t even made yet. I’m going to do my best to be much more mindful of how and when my mistakes and failures occur so that I don’t make the same mistakes again, over and over. I can only hope that I’m not the same person I was eight years ago, and that I can grow each day without allowing my mistakes to define me.

I want to be a good example to my children. I hope this is how.  And now I need to press “Publish” but I’m kind of nervous about it. I don’t want this to sit in drafts for weeks or months.

 

If you visit various online communities you may notice that some people refer to autism in one of two ways. As autism or as Autism. As a mother of someone with Autism, I tend to use Autism when spe…

Source: Autism With A Capital ‘A’ | Ever So Gently

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Image from Zimbio

Doctor Who: The Doctor, Jodie Whittaker

Have you ever had a wonderful doctor that you actually recommend to people because you genuinely feel they’re splendid in their job?

They’re the kind of doctor who keeps up on their specialty and know what they’re talking about. They have a great bedside manner. The kind of doctor who is willing, and even encourages back and forth dialogue. The kind of doctor that you want to hug during emotional moments, and on the way out of the appointment.

They even have excellent office staff, nurses, medical assistants, and APRNs. How often does that trifecta happen?

How often do you really get to keep that sort of doctor? Whenever I have this type of Wonder Doctor, I always wait for the other shoe to drop. Whenever I tell other people about my Wonder Doctor/s I can see the initial look of doubt on the face of the person I’m telling.

The more I mention my Wonder Doctor/s the more it seems they’re actually more elusive than *loyalty, devotion, selflessness, unflagging optimism, and unqualified love. 😉

In very early December I called the office of my pain management and spine specialist doctor. I needed to confirm my upcoming appointment and let them know I needed refills prior to the appointment since we misjudged the timing during scheduling the last time I was in the office. The nurse answering the phone said,

Oh… you didn’t get the letter?

Um, no?

And I didn’t call you? You were on my list my call, I could have sworn.

Well, no, James [name has been changed to protect Todd] you didn’t call and I didn’t get a letter (nervous laugh). You’re starting to worry me.

I’m so embarrassed (really, really nervous laugh from James). Doctor Awesomesauce is leaving the practice. I swear a letter went out, but sometimes … I’m so sorry you didn’t get a copy.

And that’s when I burst out crying while on the phone, and apologized to James.

I’m so sorry you found out this way.

Can you tell me why she’s leaving? Is she going to a different practice?

She’s not. She loves this place, but while her family is still young and her child/ren is/are small she wants to be sure to be there as they grow. It’s very important to her.

I understand that. I was a stay at home parent for years, and am one again. (wipes snot and tears) I wish her well, but of course I have to be selfish for a moment. Will you be moving to the new doctor’s office?

No, unfortunately. Thank you for asking, you’re the first.

Sure. You guys have been great. Are you able to tell me who’s taking over the practice?

We don’t know who’s replacing her yet, but it’ll be a few months. It shouldn’t be past March, however someone will call you sooner than that. If not, you should, um… get a letter. With, um, all of the contact information for the new doctor.

NOTE: I did not get a call. Nor did I get a letter. Shocker, right?

I did get my usual 3-month refill for my daily medication, and single month refill for Tramadol. That helped ease some anxiety.

She was my White Rabbit of Wonder Doctors. When I got off the phone with “James” I cried for what felt like hours. Deep, sobbing, grieving cries. Much of it was because of what I described above, and much of it was because this I felt out of control. I felt anxious from not knowing who would be taking over the practice, and not knowing when that would occur. That was a rough, impossible weekend.

Throughout December, January, and February I called the number listed on the practice’s web site for Pain Management and Spine Specialist section. It directed me to my old doctor’s phone number, so I left messages there letting them know I was still interested in setting up an appointment with the new doctor. The longer I went without knowing anything, the more anxious I felt. In March I started to panic when my prescription for my daily medication reached two weeks. When I reached only a few days it was full blown anxiety attacks, especially since my pain levels have been increasing versus simply being a flare up.

I called my primary care doctor at that point and explained the situation. She was the one who referred me to Wonder Doctor in the first place, especially as friends in and out of the practice. She insisted on an in-office appointment so I complied and went in the next day. Of course we talked about my pain levels, which she keeps close track of along with the rest of my health, and updated all of my medications as we do every appointment. We had to remove the Zoloft since I was getting over a severe allergic reaction.

She agreed to give a one-time refill on my Gabapentin/Neurontin, which not only helps the Fibromyalgia but the myofascial pain, carpal tunnel, and osteoarthritis. She then asked me if I expected a refill on Tramadol. I hadn’t asked for one since I had been without it since mid-February after stretching it out. I tend to try to stretch it out for emergencies, but got yelled at by my pain doctor for that since she said it’s not managing my pain properly. No pain medication taken daily can relieve more than 25-to-45% of chronic pain, and that’s why Tramadol when used properly is given to take 2X a day 12 hours apart with the exception of specific, special instructions for, well, exceptions. When I explained what Wonder Doctor and I discussed and usually did, and how I handled Tramadol, she looked through the shared notes on the system and saw I wasn’t lying. She called in Tramadol too.

In case you couldn’t tell, I really, really love my PCP. Since at least as early as 2004. I’m still waiting for the other shoe on her to drop. ::sigh::

When I went to the reception nurse to check on my next appointment, she gave me the number for the new Pain Management and Orthopaedic Specialist taking over Now SAHM Doctor and set up and appointment for me for two weeks later. That was early-ish April. I prepared myself for a doctor who would be like my first Rheumatologist.

He’s young, tall, seems to know his stuff regarding my medical issues, and he’s open to back and forth discussion. He’s open to continued research. He’s open to discussing how alternative therapies can help support relieve pain so that any pain medication I take is at minimal dosage. After that appointment, we had a check-in two weeks later since we adjusted my meds and got results from a urine test. At that appointment we both agreed to continue treatment, and both signed the contract regarding opioid use and other pain med usage, how to behave in the office, how to use (or not use) alcohol and other drugs, how to approach ERs and hospital visits, how to approach other doctors, etc. He’s really, really thorough.

I’m waiting for the other shoe to drop.

If that shoe does drop, I’ll have to remember that when God closes one door he always opens a window*.

 

*Full quote with thanks from  John Grogan:
Many of the qualities that come so effortlessly to dogs – loyalty, devotion, selflessness, unflagging optimism, unqualified love – can be elusive to human.

*2 I’m sorry not sorry for mixing metaphors. 😉

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I have a lot of thoughts that are combating the issue of palliative care regarding in-the-home versus in nursing homes. In the early-ish part of the summer we received the news that a nursing care home finally had an opening for both of my grandparents. I should clarify that the “finally” part is really due to the fact that it took a long time for them… well, I should clarify that “them” is really my grandfather agreed to the move and my grandmother threw the mother of all tantrums, but relented. Once my father and uncles made the decision for my grandparents, and once they informed my grandparents, it only took a month or so for a health care facility to open up space for them.

There was relief in this. A lot of relief, actually. The fact that they would have on-site 24-hour nursing care and a doctor on staff. Their doctor would be on call. Emergency care would be available instantly as needed. There are a couple of hospitals within minutes from the nursing home, if needed.

As soon as they moved in, my grandfather felt relief. He could see that he really wasn’t able to take care of her any longer. That was hard for him. Not being able to pick her up when she fell was something that had been normal for a long time, but the emergency paramedics finally told them that unless she agreed (or he forced her) to go to the hospital when they called 9-1-1 and she was clearly injured (she was) then they were going to stop coming to the house for her. Whenever he fell, he knew enough to go to the hospital. So that was the tipping point.

I spent my summer with the girls, off work and visiting my grandparents as they adjusted and took turns with one being upset at being there and the other saying how wonderful it was. Yeah. Being in your 90’s and married for 70 years can be like that.

A week ago we held a party for my grandparents at the nursing home for their 70th wedding anniversary, and it was beautiful. My grandmother looked beautiful. She held her rosary the whole time. As I was growing up, and let’s face it her entire life and mine since at 40-something I still feel as if I’m growing up, she always put herself last. She always put all of her focus on the person who was in front of her. She made everyone in that room feel special, and so when they came for her and my grandfather’s anniversary, they made sure that she felt special.

She wasn’t quite herself, and I could see that. The entire week prior, she’d been declining. Her mood shifted. She started seeing hallucinations. Night time was the worst. She hadn’t slept for two or three nights, and so the day before the party, when I visited, they made sure she slept. She was in a great mood for the party, but something had changed. She knew who we all were and why we were there but she heard music that we couldn’t. She asked and talked about odd things, for her.

And then this past week things got worse. My grandfather and uncle swore to me yesterday that she wouldn’t recognize me, but she did. She couldn’t move much, but when I held her hand she held it back as much as she was able, and even lifted it to point at my youngest daughter when she wanted to see her. She would pucker her mouth and move towards us when she wanted kisses. The whole time since being in the nursing home, that’s all she’s wanted, is kisses.

They swore she wouldn’t understand anything we said to her, but she did. She tried to talk to me, so I told her about my girls and my husband, how school and work were for them and how much I’m enjoying being a stay at home mom again. I knew she wanted to know about my pain levels too, but I avoided that topic. I told her that I finally prayed for what she had asked me to pay for, for her and that I’d done so at Church yesterday morning right before coming. She blinked a few tears and tried to nod, leaned for kiss, and I cried. I told her that I prayed for it even though I didn’t want it, because I know she needs it and she’s ready, and because I love her. I told her that I love her no matter what, and that I’ll be okay, that the entire family will be okay and she can let go.

We stayed, Darling Girl and I, for hours with her. It was very difficult to leave. We let the nurses know we were leaving, and then we saw my grandfather coming down the hall from his room with a priest trailing behind him. He told me that the priest just got there, and could I please stay. This was their parish priest. He was there for Last Rites.

So of course I stayed. We stayed. I held her hand. When she saw her priest, she gasped and said his name after not being able to speak for a few days. My grandfather was shocked because he had been 100% sure that she didn’t… couldn’t recognize anyone and nor could she understand what anyone said. It was beautiful from start to finish, and I never thought it could be. Maybe it was beautiful because it’s what she wanted.

Now it’s Monday morning, and my Darling Girl is sad. This is making her think about when my husband’s father passed away four or five years ago. It’s very similar, but she didn’t understand what was happening then. She told me this morning on the way to school that she’s remembering what happened to her Nonnu, but with a new understanding and so she’s feeling the experience of his death all over again as her great-grandmother is dying.

What she’s having trouble understanding is how my grandmother could be choosing to refuse to accept her medications, even the pain meds; how she could be choosing to refuse to accept any food or water. At 12 1/2 years old she knows how long a person can without food, and without water. I don’t know how to explain that to her, how a lifelong devout Catholic could choose, in her mid-90’s, to stop it all and to leave directions for the nurses, doctors, and family to refrain from any extreme lifesaving measures. It’s not rational to my daughter. I told her that as much pain as her great-grandmother is in from her illnesses, she’s in far more pain when she eats and drinks because her insides don’t work as well any longer, and she wants the pain to end. That didn’t satisfy her, and I know that nothing will. It sounds weak in my ears too.

Also this morning, Sweet Girl was having a really difficult time. She asked me last night to explain what was going on. She was more angry about getting up than usual, and complaining about everything that’s ever made her angry. I nearly lost my temper with her, and when I realized that my temper was shorter than usual I knew it was because of my sadness and the anxiety of the vigil. I realized my mistake, shifted gears and told her I recognized how sad she must be, and she could visit with me after school but that I won’t force her. She finally managed to cry, sad crying, and it seemed a relief to her to be able to identify with words what was wrong.

Dearest Girl, my eldest, turned 17 yesterday. She was amazing about me spending the day with my grandmother. She seems to be holding up well on the outside. In that way, she’s a lot like me. Being the eldest, like me, it’s natural. I know that she knows she can talk to me; she will when she needs to talk.

I don’t know how to do this. It just feels as if I’m doing it all wrong.

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That moment when, even though you feel guilty for multiple reasons, you do something that changes your entire life.

I turned in my resignation. I did it. I did it with a letter. This time, my boss didn’t try to convince me to stay after our long discussion. This time, she understood. 15 months ago, she convinced me to stay, “just until the annual meeting,” and I promised that I would. I guaranteed her those three months, and then, “we’d talk again.”

This time, when I turned in my resignation, she had already announced her own retirement.

I have five days left, including today, and I promised I would finish up my notes for my files. I hope that I can. I promised I’d stay an extra day or two if I couldn’t finish up by my last day. I’m a sucker. I really am. I don’t know why I didn’t just keep up with my notes as I went along.

Yes I do, that’s a lie. It’s because there’s been so much work piled up with my consumers and at some point, it was the paperwork that took the hit. Now I’m paying for it. It’s okay, I’m not taking new people on. I’m wrapping up and passing my people on to coworkers because that’s the way it goes here.

So today, there’s a Board Meeting. It’s a mostly-new board with a brand new Board Chairman and he’s pretty awesome. He’s got a lot of energy and brings a lot to the table. I forget how it came about, but at the annual meeting he ended up offering to buy me a cup of iced coffee as an apology for something, and I forgot today was the board meeting so he chastised me for not e-mailing him with my favored coffee flavor. I told him, then hedged, and told him that Friday is my last day because he offered to bring the coffee next week. He seemed genuinely bothered, so I explained about my health and current family concerns, but how much I love the agency and the people I work with. He asked if there was anything the board could do to keep me here and stated that if I change my mind after a period of time I’d be welcome back any time. I told him that meant a lot to me and I’d keep it in mind.

That was kind of awesome.

Now I only have to worry about getting my SSDI application completed, and waiting three months or so for them to respond with an approval. But I have to actually stop working first. I’m nervous. I’m really nervous. This whole thing is a huge life decision. It changes my life, my husband’s life, and that of my children. I realize that it also affects the work place that I’m leaving.

I have to be selfish this one time. I have to listen to my body and my family. I can even take this as a chance to talk to my daughters about how this choice still fits in with being a feminist.

It’s time to do this. The rest of my life is about to begin.

 

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