Living with brain impairment: dumb stuff

Living in a post AFE world is really strange. I'm lucky to have found a great online support group of other survivors and have connected with several of them. I know a lot of them go through similar things and some don't have much impairment in any area. We really are all different, no two paths or the same and sometimes that's lonely.

I was talking to someone the other day as we were waiting in line to check out at Target. Just benign chit chat with a stranger and when the cashier gave me my total, I completely blanked out. Suddenly I didn't know where I was, if I had my kids with me, what I'm supposed to do, how do I pay, why am I buying stuff, what do I do with this stuff, how am I going to get home, etc.

The closest thing "normal" people have to relate to is you know when you take a nap and wake up hours later having no idea what time or day it is and you felt like you've slept for a decade? It's like that, but scarier.

This woman looked concerned, obviously, and asked if I was OK. I said I was but I'm just forgetful (haha) and I struggled to figure out what I was supposed to do. Thankfully, she was a decent person and helped me use the card reader because I couldn't figure it out, it was like looking at a foreign object. I have my PIN written in marker on the front of my card because I can't remember it anymore. By this time Olivia wandered back and she helped me get back to the car. By the time we loaded things in, my memory "snapped back" and I knew exactly where I was, how I got here, who I was with, my plans for the day.

This happens all of the time. I often have people say, "well you look normal" and I do. I look normal. Looking at me you would never know this happens. You wouldn't know sometimes I forget how to get dressed. You wouldn't know sometimes I forget how to brush my teeth or how to fix my hair. You wouldn't know that sometimes I can't tie my shoes or I can't find my way home. You wouldn't know that I can't always tell you my phone number, address, or birth date. I know I have four kids but I don't always know how old they are or when their birthday is.

Sometimes I'll go to a doctor and they'll give me instructions on what to do with my next medication. I won't remember it. Sometimes someone will explain to me how to do something, even easy things, I won't remember it. If I'm doing any kind of an activity (typing, texting, scrolling on my phone, cooking, putting things in my purse, putting shoes on, etc) and you're talking to me about something? I won't remember it. If we're in a crowded place and you're talking to me? I won't remember it but I'll also struggle to follow because I can't focus on just you. If I'm reading a book I sometimes have to read chapters four or five times before I understand what I just read. Sometimes I never do.

I can't put those numbers in order. I was playing a few weeks ago and realized that's a good example of something I can't do. I can't tell you which is the highest or lowest number. I can't always count coins or cash. I can't do any math in my head. I can't figure out a tip. I have a hard time dialing a phone number. I can't read recipes or follow them.

I could go all day with things that I can't do. What I can do is try to help myself. A couple of years ago my friend Shirley bought me an Erin Condren planner and I loved it. The following year I bought a significantly cheaper store bought knock off and I hated it. Last year I bought an Erin Condren planner for myself because it REALLY helped me stay on track. Every appointment, every thing I need to do goes in my planner. I need to grocery shop? I put it in there. I need to run an errand? In my planner. Olivia needs an outfit for band concert? In my planner. Literally EVERY THING goes in my planner. The entire family knows my planner is basically our family's Bible. I'm not kidding. If you ever hear me say, "I'll remember that", I am lying to you so I don't look impaired and I will not remember.

I hate, hate, hate looking like I'm not normal. I don't like looking like I need help with basic, common, dumb stuff. I know that I DO need help, I don't like people seeing me in that moment, I feel self conscious and dumb. Rational? NOPE. But it is what it is. 

So about a month ago I ordered my 2020 calendar because I already have doctor appointments lined up for 2020 and some book reviews, school calendar stuff, etc. It was time to get my new one. 

Look how pretty it is! I'm all about colorful stuff so I went with this one. AND put my name on it just because I could. 

I also got some notepads (because I write a lot of random notes of things to remember), bookmarks, and some address labels. Want a really good gift idea for me? ADDRESS LABELS. 

Isn't it pretty? Truly. It has a lot of sections in it that I didn't use in my last planner but I want to use in this one. I told my therapist I'm going to start a grateful journal and write things down that were good from each day, and the worst thing from that day and hopefully one outweighs the other.

Do you have ways to stay more organized? I'm taking ideas now because I'm really struggling.

Book Review: The Echo Park Castaways

I feel like I don't read enough middle grade books, which is a shame because there are some real gems in there that even adults would like, and this is one of them.

The Echo Park Castaways - M.G. Hennessey

Nevaeh, Vic, and Mara are veterans of the Los Angeles foster care system. For over a year they’ve been staying with Mrs. K in Echo Park. Vic spends most of his time living in a dream world, Mara barely speaks, and Nevaeh is forced to act as a back-up parent. Though their situation isn’t ideal, it’s still their best home yet.

Then Child Protective Services places Quentin in the house, and everything is turned upside down. Nevaeh really can’t handle watching over anyone else, especially a boy on the autism spectrum. Meanwhile, Quentin is having trouble adjusting and attempts to run away.

So when Vic realizes Quentin just wants to see his mom again, he plans an “epic quest” to reunite them. It could result in the foster siblings getting sent to different group homes. But isn’t family always worth the risk? 

Let me start by saying that if you are in charge of purchasing for your library (public or school) or classroom, this is a really fantastic read that you need to strongly consider. It raises a lot of really good discussion points that could also be tied into kindness and even anti-bullying. I'm not kidding when I say that this book can cover so much which is astounding because it is only 200 pages plus a couple of pages for a very nice Author's Note (also worth reading).

In this book we follow Vic (who thinks he's a super spy), Mara (who speaks mostly Spanish with very little English so she's mostly quiet), Nevaeh (who is almost to high school and has plans to make it someday as a doctor), and later Quentin (who Asperger's and doesn't understand what it means to be in the foster care system because he's new). We swap between points of view (except Mara) as we go on a "quest" to find Quentin's mother.

The ending is really sad (I thought) but also kind of nice because it turns out they all have something key in common and while on this quest they learn a lot about each other and the way they feel about each other, but they also learn what it's like to have a family. We also get to see a really sad glimpse into the reality of the foster care system but we also see how sometimes a case worker's hands are tied and they have to make quick choices and don't always have time to think the long term ramifications through. We see mental illness, we see deportation, we see illnesses, and we see these children brave their way through it but also their vulnerability at the end of the day.

As a mom this really broke my heart because I can't imagine how any of my four kids would fare in the foster care system, and I really have a greater appreciation for the good foster parents out there who do their best with kids with all kinds of backgrounds. This is a real testament to never knowing what someone else is struggling with concept.

I'm so glad I got to read this one, it's a really wonderful book and if your child(ren) need something to do to get them off of Fortnite, this is a good one to give them. It's geared toward ages 8-12/grades 3-7, but it's a thoughtful book for any age.

   

I received an ARC for this courtesy of HarperCollins and MB Communications (thank  you!) but all thoughts are my own. This post also contains affiliate links which help keep this blog going. 

Book Review: Being the Grownup

I saw this book come up as an option to review and I literally JUMPED on it because parenting is really hard and it actually sucks a lot of the time and something my friends all say is that those What to Expect books are garbage because pregnancy is nothing. You see a doctor regularly and they help you. Nobody, and I mean nobody, helps you as a parent. You're expected to know how to raise a human and it's really freaking hard. Especially when you get a kid like my Penelope who brings you to the brink. Daily.

Being the Grownup - Adelia Moore

Children need adults to survive. This, despite the profound change our digital era has wrought on family life, remains the essence of parenthood. Being the Grownup: The Natural Authority of Parenthood begins not with what should be, but with what is: If you are a parent, it is your job to provide shelter and safety, to make decisions about education, childcare, health and nourishment, to create the habitat that is the context and crucible of family life. Being the Grownup helps parents translatetheir determination to care for and protect their children into the clarity they need to communicate authority with a firm confidence, whether for bedtime, screen-time or mealtime. Just as she would in a clinical conversation, the author shifts the focus away from disciplinary strategies and back to the core of parenthood, the relationship between parents and children as it evolves, moment-to-moment, from the dependence of infancy to the autonomy of young adulthood.

Being the Grownup zeroes in on the core challenge for every parent, the hard work of building a relationship that combines trust and connection with confident authority children can feel and rely on. Relationships take time, and so does learning about relationships. Readers will not find bullet points or formulas. Instead, to more fully understand what happens moment to moment between parents and children, and what patterns between them may strengthen or undermine parents' authority, my readers will find moments in the parent-child relationship examined from a variety of angles. Each chapter delves deep into a topic, including attachment, temperament, family systems theory and body language, making connections from theory and research to everyday family life.

No one book can tell you what to do in every situation with every child. There are simply too many variables. That's why it's important to know more about what to think about parenthood and the relationship you have with each of your children: Being the Grownup helps you do that.

Let me start by saying I have four kids ranging from almost 3 to 13 years old. I have been doing this mom gig for awhile and I know enough now to know that every stage is great and awful at the same time. I also can tell you that you will forget a lot of the awful and a lot of the great. You have a general idea of how you child was but the every day stuff you forget. I know this because I have Facebook and every day I look at the Memories area and I see how awful my older two were that I completely forgot about. Apparently seven years ago they flooded the basement and carved into the new drywall in the dining room.

And here I've been telling people they were so good, never any problems. Ha!

So I'm not a spring chicken and I have children so I go into this book with a different perspective than maybe a new parent or even a non-parent. Because we are at our parenting best when we have no children.

I will tell you this book is FULL of information and perspectives but I will also tell you this is not a book you sit and read cover to cover to relax before bed. It just isn't. I have read it in chunks because I kind of thought about what I read after each and in some, tried to use some of the information she gives us to see how it applies when you're really on the battlefield.

Though it's not a relaxation read, it's a great one. The author reflects on her time parenting young children and presents scenarios we are all familiar with and have experienced, and you immediately trust this person because they get it, they know what you're dealing with. She reflects on her options on how to handle situations but also recognizes that parenting back then is vastly different than parenting in 2019, that we have completely different challenges added in.

Something that jumped out at me, that I've thought about a lot is found on page 78 in the "What Matters?" section:

"...your kids also learn your values through the organization of your household, the expectations, curfews, chores, rules about calling home, and so on."

It kind of goes with the concept that we're all on a cycle, and what we do as parents is modeled after what our parents did, etc. So if we think a tidy home with rules and chores for everyone is important, that is behavior our children will later model as adults. If our children live in chaotic environments, parents are late making them late for school, nobody cleans up after themselves, etc- that's often how they end up as adults and I can recognize that in many people I know.

Overall I really enjoyed this book. If I had to nit pick I would say having the sections labeled differently would have been helpful. There are chapters more focused on babies and small children development but the section wouldn't necessarily make you think that way. Also, there are sections that touch on teenagers and even talk about technology, but I didn't know that by looking at the chapter names. Really a silly thing to point out, but in the spirit of we can always improve, that would be my only thought. Oh! I want to also mention this book is extremely well researched and put together. In the back is an extensive reference section so if you wanted more information about literally anything in this book, the information is there and that's really amazing.

Overall? I'm actually giving this a 5 because I spent a lot of time reading and re-reading areas and seeing how it applied to how I've parented so far but also how I think I might as we reach milestones down the road. I love the idea of natural authority and how that doesn't mean dictatorship. I highly suggest this for any parent out there wondering if you're doing it right or having no idea what to do at all, and even the people who know they are messing up but want to get better- you can definitely turn the boat around with this book.

   

Thank you to Hollow Hill Books and author Adelia Moore for my ARC of Being the Grownup in exchange for review! Affiliate links are used within this post which help keep this little ol' blog going. 

Have you read any great parenting books lately? I'd be interested in which ones! 

Book Review: An American Marriage

Normally I don't read Oprah Book Club picks because, while I think Oprah is pretty great, her book picks are always kind of blah. Except for that James Frey book that turned out to not totally be a memoir, but fictionalized memoirs are a real thing now and I think we all have him to thank for it. I actually really liked his book. The last time I read an Oprah book is when I read The Story of Edgar Sawtelle and it was so bad I told the librarian at my public library (where I got the book) and I wrote a letter to Oprah. Did she read my letter? Doubtful. But if she had she would have heard all the ways in which that was a terrible book.

I got this one for my birthday and I had been eyeing it up at Target after I heard about it on a podcast and I finally got to it.

An American Marriage - Tayari Jones

Newlyweds Celestial and Roy are the embodiment of both the American Dream and the New South. He is a young executive, and she is an artist on the brink of an exciting career. But as they settle into the routine of their life together, they are ripped apart by circumstances neither could have imagined. In this deft exploration of love, loyalty, race, justice, and both Black masculinity and Black womanhood in 21st century America, Jones achieves that most-elusive of all literary goals: the Great American Novel. 

Let me be upfront, I feel like reading this book as a white person is a completely different experience than reading this book as a black person. I feel like that's how it's supposed to be, so any criticisms I have of this book, take it with a grain of salt because your experience may be vastly different. It was really hard for me to identify with these characters and understand the dynamic between them and their families and everything in between because this isn't a life I know or understand. I can't ever understand and I won't pretend to because I'm as white as white gets.

So with all of that, I really struggled through this book. I will say it's an incredibly fast read and I got through it in one sitting because I desperately wanted to know what was going to happen with Roy and I felt like the end of the book was incredibly heartbreaking. When I put the book down at the end I really didn't know how I felt. On one hand, I recognize that law enforcement and the American justice system is not set up to help black people and it isn't necessarily set up to find the truth.

In this book we have Roy and Celestial, who are recently married and the book starts off with Celestial very much not wanting to go back to Roy's hometown to visit his folks. She gets an uneasy feeling and Roy brushes her off. Which, let's side note- never, EVER brush off a woman's intuition. We're always right. Roy comes to learn that years later, but I knew right then that her feeling was going to be pivotal. Anyways, while there we see the uneasy relationship between Celestial and Roy's parents, we learn a truth Roy had "hid" from Celestial, and then we jump to Roy being accused and ultimately sent to prison for a rape of a woman he did not commit. But even though we know something to the core of us, the justice system is set up to make us all believe maybe they DID do it? and we start second guessing the truths that we know. And of course, Celestial knows that there are things about Roy she doesn't know so maybe  he COULD do this.

The majority of the book are letters between Roy and Celestial and they learn more about each other through letters than they ever did dating (which is also another thing to think about, we're getting married but how much can you really know of a person? Is it possible to know everything?). But ultimately, can a love survive something like this? What would you do if your spouse was accused of something and sent to prison- could you stick by them? Would you stick by them? It gave me a lot to think about in terms of my own marriage but I can't imagine what this would be like if I were a black woman. The stigma around your spouse being in prison, or a black man- of course you were in prison, that sits with you for life. Also, are people going to believe him that he didn't do it long after he's done his time? No, that's not likely.

I think this book questions what a marriage is, I think it questions your feelings on systemic racism and our own bias and conclusion, and it questions America, is it really the land of the free? I have a lot of other thoughts but it gives away some key points in the plot that are perfectly timed in the story so I can't talk about them. I will say real quick it reminded me of the Kavanaugh hearings where his side really based his defense on how can she possibly remember his face after all this time, and in this book that wasn't even a thought, "Of course the rape victim could identify him, you don't forget that."- it was an interesting turn of the tables and I thought it was smart for the author to subtly include that.

Overall? 4 stars. It was a quick read and it got me thinking about different things. This would lead to a rather spirited book club read, and I can see why it's gotten the buzz it has. Well deserved.

   

This post contains affiliate links and that helps keep this blog going. Thank you! 

Exercise and Ears

Weight loss... it really sucks and every time you think you've hit rock bottom it's like the ground says "just kidding!" and drops from under you.

That was kind of my last two weeks.

I continue my walking and I'm really battling fatigue. Fatigue and rain. I've discovered if I walk when it's chilly (like 45 degrees or below), I lose feeling in my hands and feet for awhile, so I've stopped doing that because I don't like that feeling. That basically means I haven't gone out and walked as often as I planned because we have yet to have summer in northern Wisconsin. It's raining and cold today, too and I'm basically over it. I hate living here.

I did get some information about a Weight Loss Exercise Class led by the physical therapists I saw last year at the hospital system I'm in. I recently had a doctor tell me I may be a candidate for a weight loss surgery and I just don't think I can do it. It would be great but the diet to follow before and after? I can't, you guys. I would be starving myself. I want to eat what I want. I know my portions and what I eat isn't my issue right now, it's my lack of movement, so I think I'm going to join this class and see what happens. It meets twice a week, it's $5 a class and it's an hour each time. I feel like if I have someone showing me what to do I will be much more successful. PLUS! It's an hour out of the house so I'm always up for that.

Next up is Lucy. I think I blogged a few months ago that we took her to an ENT doctor and he said she might have some hearing loss but she definitely had fluid in her one ear but we'd come back in a few months and check it.

Well it's been a few months and we came back to check it.

It turns out that she still has fluid in both ears (like WAY down there) and she has a 30% loss of hearing in both ears, which puts her in the mild hearing loss category. Mostly this means a lot of her speech issues is an apraxia and hearing loss combo and that explains a lot of her deficits. Most letter sounds and combinations, she can't hear. If you go outside and hear a waterfall or tree leaves rustling? She can't hear that. When I whisper to her? She can't hear that. When we talk quietly during bedtime story? She likely can't hear it.

It explains SO MUCH.

It also really sucks and is heartbreaking.

The plan right now is for her to have surgery in mid-July and have her ears completely drained, tubes put in, and her adenoids removed. Right now it's pretty clear she doesn't breathe like you and I do, and that might be why she's not able to keep her tongue in her mouth when she speaks. The tongue muscle isn't doing it's job so while we're doing exercises for that, we need her to breathe normally for it to really work. So that's why adenoids are coming out.

We'll be holding our breath because after her surgery we'll know (hopefully pretty quickly) what kind of hearing loss she has. It's either due to the fluid/lack of air flow in her ears, it could be because the parts of her ears aren't functioning properly, a mix of those two, OR it could be a brain thing. Meaning she can hear it, but her brain doesn't know what to do with the sound, if that makes sense. It's kind of a toss up. But I feel like she fully understands what we're saying, and I feel like she knows what she wants to say but it's abundantly clear she doesn't know how. The thought is there but she doesn't have the ability to form the words.

I'm just bummed at the timing of this. She'll have her surgery mid-July and our current speech pathologist is only with us until July 31, then she becomes part of the school district's speech team. Which is great, I'm sure they are great, but Lucy has formed an attachment to our current guy and I feel like he has a good handle on where Lucy's deficits are and where to go. We'll be really bummed to not be in his hands anymore.

So that's the scoop. I'm really nervous about it. I know the surgery is like 10 minutes and not an issue at all. My issue is a fear of anesthesia and it's all me. In my head I know it's routine and fine but I also know that my procedure was routine and went very wrong quickly and it's not anything near the same time but trying to not let her see my fear is tricky. So I'm certain I'm going to cry the entire time. No question. HA! But let's hope her hearing loss is something we can correct and it won't slow her down.

Goats + Macaroni + Pizza = 15

If you follow me on Facebook or Instagram you would have seen last week Matt and I celebrated 15 years of marriage. Kind of a big deal because years 2007-2012 were so rough that I honestly didn't think we were going to make it and it's been a struggle to get through some patches.

But we've made it.

It's weird to say I think we're in the best part of marriage right now, but it's true. Considering we're really broke, we're really stressed out, Matt has to do a lot more to keep the house going and help me on really not great days, and I'm trying to keep going everyday and keep up with my appointments and go in with a positive attitude, we are EASILY at the hardest, most stressful part of our journey. Surely nobody could have predicted this is what our life would be like right now but here we are.

So when I say we're at our best? I mean it. I know every day that when it comes down to the end of the line, Matt is my ride or die. He is literally going to be there and see me to the end no matter how awful it is. I can't imagine holding anyone else's hand when I get bad news. I can't imagine laying next to anybody else. He really is, no kidding, the only person I truly feel safe with. And I don't mean safe like I'm in danger, but I know he's going to take care of me. It's really the best feeling. Anything can come our way and I know we'll be OK. I don't think you can get to this point without time and awful things happening, to be honest.

On our anniversary, for the second or maybe third time EVER, I had flowers delivered to me. I was so surprised and I LOVE THEM. He also got me a bunch of candy a cute card. 

And then I read the inside. Still a jerk.

That night we decided were going to take the kids out to eat and we would go somewhere in Canal Park which is where we stopped to take photos on our wedding day. 

These photos are 15 years apart and we have aged SO MUCH. I could hardly believe it when I looked at the photos on my computer.

After dinner we went back to Brighton Beach and we let the kids throw rocks. Can we all appreciate Penelope's stance and hand gesture? And Lucy trying to copy? I seriously love everything about this picture. Even whatever it is Jackson is doing. 

Again, these kids are so weird and I love them for it. HA!

That weekend though, Matt arranged for ALL THE KIDS to spend the night somewhere other than our house.

Let me repeat that- we were KID FREE FOR AN ENTIRE NIGHT. It's so rare that happens and I was so grateful because I was just saying I really miss hanging out with just Matt. I'm not kidding when I say we get to go on one date a year. One. We are not that couple hiring babysitters, and having four kids makes it really hard to get them all somewhere. Thankfully between both Grandma's all the kids were accounted for. 

We got to try a new restaurant I had heard about and lord knows this isn't a place I would bring kids to. (This was after shopping in a store that's a pain to bring kids to. Very exciting day.)

If you know me in real life you know I always order Chicken Strips or a Cheeseburger (well done, as done as done gets, burn it if you have to). Always. Everyone laughs.

YOU GUYS- I ordered macaroni and cheese. They had my usual and I decided that I'm a big kid now, so logically I order macaroni and cheese. It was alright. Dare I say too much cheese? It was kind of too much. 

Then we got to go to a grown up movie, Shaft, and it was really pretty good. It was us and maybe 5 other people in there but I really liked the movie and this isn't even my go-to movie genre.

The next day we decided to go on a quick lunch date since we had no kids and I had a coupon (ha!) so we went to Vitta Pizza in Canal Park. 

I'm glad I didn't bring the kids because they wouldn't have eaten anything in there but we each ordered a small pizza and waited. 

It's not often we look happy by lunch time on a weekend, usually by this point everyone is fighting and we've both declared we're taking a nap.

The pizza was really good, though! I really liked mine and now that I'm looking at it again I kind of want to ditch the kids so we can go again.

Overall? I'm going to declare this our best anniversary yet. This was the year we wanted to go to Hawaii but that didn't happen. We'll go someday.

Book Review: Our Stop

I'll have another post for you later today, but let's get started with a really cute RomCom that's actually pretty perfect for your ride to work!

Our Stop - Laura Jane Williams

What if you almost missed the love of your life?

Nadia gets the 7.30 train every morning without fail. Well, except if she oversleeps or wakes up at her friend Emma’s after too much wine.

Daniel really does get the 7.30 train every morning, which is easy because he hasn’t been able to sleep properly since his dad died.

One morning, Nadia’s eye catches sight of a post in the daily paper:

To the cute girl with the coffee stains on her dress. I’m the guy who’s always standing near the doors… Drink sometime?

So begins a not-quite-romance of near-misses, true love, and the power of the written word.

Have you ever read the Missed Connections column in a local paper or even on Craigslist? I used to just for fun on my lunch break never thinking I'd see anything that could have been me but that's what the basis of this book is. Daniel sees this cute girl on the morning train and decides to put this out there in the hopes that maybe this girl sees it and it maybe becomes this grand love story. Nadia is kind of the disorganized/hot mess you love anyways because she's just a series of misses. Fortunately for her, the day she spills coffee all over the front of her dress is what really gets Daniel to notice her.

Overall? This book is cute. I found myself smiling throughout and trying to envision the near misses and the anxiousness of running down the street to get to this train on time, etc. Once they "connect" there are a real series of missteps getting in the way of a first day and we find out more about their friends and the circles they each float in more than we do about them. The ending? The ending is really adorable and I loved it.

My only real complaint about this book is that it is slow. The whole first half could have been pared down a bit and I would have liked to have an epilogue or some kind of "One Year Later" chapter or something to see what happened beyond the last page, basically I'm left wanting more. I didn't totally love Nadia's character but Daniel's was kind of sweet. The kind of guy I'd date? Not really, but he's that sweet/thoughtful/makes an effort kind of guy you want in every solid romance movie and I just really liked the effort he put into the entire story.

Surprising part of the book? The section on grief. You don't expect to read about grief in a romcom but specifically how men grieve a loved one and how that takes on different forms and it's a completely different journey than what women go on, and I thought that it was a really interesting part of the book and grateful it was included but also because it was done really well.

Overall? I'm giving this one a 4. It wasn't an hit out of the park, drop everything and read this, but it's more of a great book to listen as an audio book perhaps on your way to work or something light to read on your lunch break or at the park.

   

Thank you to HarperCollins and Avon Books for my ARC of Our Stop! All thoughts and opinions are my own. This post does feature affiliate links which help keep this blog going, thank you!