Archive for the ‘family’ Category


Do you have siblings?

I do. I have two brothers, both younger. BroOne, who has two daughters, is two years younger than I am. BroTwo, who has two sons, is ten years younger than I am. Yes… I’m the eldest. In case you haven’t been able to tell from my writing over the years and my parenting style, I’m an eldest child.

Are you close to your siblings?

When I was growing up, I wasn’t close to BroOne but I was loyal to him. We had a lot of sibling rivalry, which I’m sure my shrink would say is due to the fact that we’re two years apart. [NOTE: That’s what she says is the reason my lovely Dear Girl has rivalous feelings towards Sweet Girl and Darling Girl. SIDE NOTE 2: Eldest of mine, Dear Girl and I chatted, and she shall henceforth be known as Bunny. That is all] We fought constantly as kids. My mom tells this story, which I remember because I was so distressed: I was little and he was a baby. I had this amazing little musical carousel for little kids, and it was one of my favorite toys. It ranked up there with Barbie dolls. We’re talking serious child currency, here. Well, my mom played the musical carousel for my tiny brother and I was devastated she took my toy and “gave” it to him without asking. I took it back, hefted it under one arm, and stomped down the stairs declaring the whole way down that it wasy MY toy, NOT my brother’s, and he wasn’t allowed to touch it. My mom didn’t do that again. She asked to share other toys that had less value to me after that, ha ha. I think that set the tone for our entire childhood and majority of our teen years.

We, BroOne and I, began to fight less frequently in high school. I think it’s because we were both out of the house less, and a lot of our friends were siblings to each other. There was always loyalty, though. We may have driven my mother up and down every wall in the house due to our constant fighting and bickering, but when it mattered we were loyal to each other. I hated seeing him in serious trouble, so I started to protect him at home when I could. Once, I locked him out of the house when my parents were out and he was so angry with me he tried to kick the door in. It was a wood door, and getting old, and it cracked in a few places. We had to press the door back into place but the cracks were huge. We found wood glue, filled them in, and then found wood stain to match it to the door. It was a bonding moment. Ha, see what I did there? Wenever told my parents until I told my mom after they were planning to replace that door. She still couldn’t tell the door had been essentially broken since I was 14/15 years old.

And of course, no one could bully him in school. No one. I’ve always been anti-bully, but to family? Oh no.

We got a lot closer when he met his now-wife. We’re close enough now that he’s Godfather to two of my daughters; I’m Godmother to both of his daughters. I have a great relationship with his wife, and always have. She’s an incredible woman, wife, and mother. I envy her in a lot of ways. I’ll bet she’d be shocked to know that. That said, we have a lot of things in common in our lives including health issues, but mostly in our views on life and parenting. I would do anything for BroOne and SisOne. Their girls are like my own daughters. People say that, but having daughters of my own, I know what that love feels like.

I think I was closer to BroTwo when we were younger. Since he was born when I was a skinny little ten year old girl, and I was thrilled to have a baby in the house, I helped take care of him. I didn’t even mind most nights when he woke up to be fed and changed; I would change him and warm his bottle so my mom could feed him. Sometimes I would feed him myself during the night, just snuggling on my bed. I begged to have him in my room. His crib was in my room until he was three years old. I learned how to care for a baby, and as he got older I learned to babysit during the summers. I loved it. We had a rough couple of years, which I believe I blogged about at one point. We have a much, much better relationship now, but it’s not like it was. We’re still working on it, finding the balance. I’m not sure he feels the distance, but what’s really good is that since his boys were born it’s been easier to relate to his wife. I love them, I love those boys. I love spending time with them. They’re generous and BroTwo is Godfather to Bunny. That’s important to me.

Do you visit your siblings often?

We try to visit with them as often as we can. We live about 18 miles away from my brothers, and around the same from our parents. When we bought our house, we were in a stage where we needed some physical space from the family where no one could simply drop in without calling first. It’s different when family lives anywhere between 2-to-6 miles away. Now, 14 years later, we miss that closeness. I think part of it has to do with the fact that my brothers both have children, and also miss getting to see my nieces and nephews from my Spousal Unit’s side more often too.

I never thought, growing up, that I would feel a need to be physically close to all of our siblings. I guess we’re lucky that they’re only about 20 minutes or so away, for the most part. One of my husband’s sisters lives about 40 minutes away. They’re all in state, so there’s that. We mostly see each other at my parents’ house but that may be changing. We also see each other for events we might host at a restaurant or something, or another family member does.

Do you babysit your siblings’ children?

Most often, when I do babysit, it’s BroTwo’s and SisOne’s girls. Recently, Darling Girl [my youngest, 13 years old] and I went to BroTwo’s house to babysit all four Littles. Both of my brothers and their wives had an event to attend, and it made sense. GoddaughterOne is seven years old now, so she’s not quite so little, but her sister, GoddaughterTwo is three years old. NephewFour [we have three nephews on my husband’s side of the family] is also three years old, and his little brother, NephewFive is two years old.

My brothers left pizza and we had a lot of [tiring] fun that evening. It had been awhile since I’d cared for multiple toddlers before; not since my best friend’s children were toddlers at the same time Bunny and Sweet Girl were toddlers.

While watching the kids, I was thankfully able to use the ladies’ room due to having brought my youngest daughter. LIFE HACK: When you babysit multiple toddlers, limit your fluids that evening.

BroTwo has crucifixes on nearly every wall in his home, and images of Jesus on several walls. He’s very, very dedicated and passionate in his Faith. He has several statues around the house too. Upstairs he has a beautiful, simple, distraction-free prayer room.

While in the ladies’ room, I noticed one or two religious inspirational quotes sticky-noted to the mirror. One says, “God, Others, Self,” which is kind of nice.

As a child, whenever my parents or the priest during homily or my CCD teachers would say,

“God is always watching you; Jesus knows your heart and is always watching,”

I would always, always get nervous not because I have something to hide but because I wanted to ask if that included showering and using the toilet and changing my clothes. Therefore…. The statue of Jesus on the window sill of my brother’s bathroom gives me heebie jeebies.

Sigh.

Jesus Statue, image from Amazon

Jesus, with a kind, loving expression on his face, one hand raised to his Sacred Heart and the other palm facing outward, is facing the toilet most often; sometimes the shower. I swear the eyes on that statue, that particular statue have a mischievous glint in them. He knows what I’m about to do, and it’s like He’s daring me. Or maybe He’s begging me, I’m not sure. Maybe it’s a bit of both. Based on stories told about him in the Bible, and stories Jesus told, I know Jesus had/has a sense of humor. Plus, if he would never force his way into anyone’s home to witness, he’d never, ever force his way into someone’s toilet.

Just sayin’.

So I take up the dare.

Every time I’m in the bathroom, I turn Jesus to face out the window to get a nice view of the trees and creek in the yard. I love Jesus and all, but I doubt he really wants to see me peeing. I say a quick prayer when I turn Jesus.

“Hi Jesus, it’s me, Jessica. But you know that. You’re Jesus. So hey, here goes.

Dear Jesus,

Most holy, he who sacrifeced his life so that we could have eternal life in Heaven, I have the utmost respect for you. My brother has this statue of you in his bathroom. Please don’t be offended when I turn it away from the toilet. I know you’re not in the statue, but it feels like a privacy thing. I’m sure you can understand. Toileting stuff probably isn’t even your thing anyway. I apologize for any offense I may have caused you. You’re still awesome.

Amen

P.S. I love you

Double Amen

And every time I come over, there’s Jesus facing the toilet. Again.

And every single time, I get the overwhelming feeling that I have to turn Jesus away from the toilet. I’m not turning away from Jesus. No, no I’m not. I’m turning Jesus away from something he doesn’t need to see. I stay out of Jesus’ toileting business, he can stay out of mine.

I finally admitted it to my brother when we were about to leave after babysitting. He chuckled. So I’mma keep on doing it.

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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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Navel Gazing, found on zuco.org

It’s been ages since I’ve talked about headlines. The news cycle went from weekly to daily. Now it seems to have gone to hourly half of the week. When I turn off all technology for an afternoon and evening, or even a full day, that’s the day that I miss several seemingly-important headlines.

Even when I don’t miss a day or two, the trick is really figuring out which headlines are the important ones. Sifting through them can be an emotionally draining chore. No one really talks about that part, do they. I appreciate having the comprehension ability to understand it out on my own. I appreciate being able to sort the facts from the exaggerations. I’m grateful for knowing how to research what I learn in order to prove or disprove what I’ve learned. I never take anything at face value. I always consider the source.

I also always make sure I have enough coffee. That’s the other trick. The comfort-food aspect makes a difference. Why? Because so much of the news is anxiety-inducing, sad, angering, upsetting. It’s important to find wholesome news and stories; uplifting and inspiring images. We need to do more than inform our brains. We need to positively feed our emotions. We need to educate ourselves, too.

I enjoy learning about new scientific discoveries. It’s exciting learning about our space programs. Finding new animals and plants is fun. I’m not beyond looking up recipes, either. 😉  I love to be able to share these things with my family.

We have to stay balanced. The headlines can’t become everything.

I know I sound like I’m tooting my own horn, but let me be clear here: I recognize that sometimes I’m wrong. ::gasp::  Oh, please, it’s not like I haven’t admitted that before.I know it seems odd but I needed to purge this before I could continue with anything else. It’s a self-affirmation I needed to see in writing.

 

 

 

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