Thursday, March 30, 2017

This Sunshine.

Getting a rare diagnosis comes with some problems. It gives you some answers, but:

The answers tend to be scary.
There may or may not be enough data to even pretend you have answers.
You're probably sicker than you should be at this point because it was difficult to recognize.
There most likely is no cure.

Pulmonary Hypertension. 

It nearly killed my unborn baby and me three years ago. They couldn't figure out what it was, and we kept getting much worse. Looking back, I don't know how we survived it, but it still bothers me I was left without proper treatment and watchfulness.

My story is going to be cut short. 

But in the time I have, it's going to be worth telling.

Don't get me wrong, even when you've decided to focus on the future, you'll get those moments. Absolutely righteous anger...

But, it's not productive to stop in that spot permanently. 

The good news is somebody has figured it out. I've met many patients so far who've switched to my current MD after he saved their lives. If anyone can help get me effective treatments, it's going to be him. And I intend to fight like hell.

I would love to be able to see my children grow up. If that can't happen, I'm going to go as far as I can, then. The beautiful family I have as an adult is my whole world. That is the sunshine, the reward for a life regained.

I have decided to just focus more on my writing. In my stories, I can give people who have no hope something. I can inspire someone to be fast and brave enough to make a difference in saving themselves or another person. That is going to have to be my legacy. Mostly because I'm no damn good at anything else. But partially for those other reasons. And I think all of that, focusing in on what remains, is how I'm best going to overcome this.

I was lucky enough to hear this last week, played on our local NGEN radio station while driving somewhere with the kids. There has probably been nothing in my life so poignantly popping up at the moment I needed it the way this did. 

And I feel like I need to update this with the news I recieved today. Right now, with treatment, the PH should improve, and my heart appeared strong in the testing even with the appearance of possible scar tissue. I don't even have to take another new medicine if I don't want to. 

I get to be left alone. 

I know now that I can't waste any of this time gift. 

I got the good news I needed. 

Friday, March 24, 2017

That One Special First Book...

Each one of my children has one special book we bought for them. Something that we could read early on to them, but also something that said just how we felt about them coming into the world. 

For our first baby, it was "On the Day You Were Born" by Debra Frasier. I ordered it a week before my baby arrived. It has simple, figurative illustrations but loving text about how monumental the birth of a new soul into the world is. Our copy wasn't a board book, so over the years it has taken a beating, but I hope to give that copy to our daughter when she is grown. 

For our son, my second child, I wasn't able to choose anything until he was really here. You worry you don't know how to love someone as much as your first baby, but that was gone once I met him. He is so beautiful and kind, and he was as a baby, and even other nurses came into his hospital room just to watch him. My love for him was no less fierce and expanded my heart just as much. I wanted to make sure he knew that, so I chose "I Love You As Much..." by Laura Krauss Melmed. It has gorgeous illustrations and is very close to nature in how it runs through texts of animal mothers and babies, and it was perfect for him. 

For our youngest, I also chose the book after she arrived, trying to sum up the feelings of being able to have her in our lives and love her and watch her grow. "Little You" by Richard Van Camp was our winner. It's something she still asks for now and then. Super easy text with stylized illustrations gives you a primal feeling of the privilege it is to be a parent. It's just beautiful. And wild enough to fit our new little girl. 

Even when all the baby books are long outgrown here, I will save these three for them. Because it tells them, better than we could with everyday words, how much they mean to us. How wonderous each one of them made our lives. 

Did you pick a special first book for your child? 

Thursday, March 23, 2017

Do Inspirational Books Make You Feel Anything?

Normally, you can follow all the book review stuff over at, but sometimes some book spillover happens here, too. 

I came across "Open When...Letters to Lift Your Spirits" by Karen Salmansohn and was first just taken in by the art. 

I have to say that short, happy books like this, meant to brighten your outlook, only work for me when illustrated. Photos don't do it. The art makes it feel like a trip to a mini-museum of contemporary pieces. That by itself kind of makes me happy. That may or may not be a designer thing...

Not all the letters in the book made me feel something positive. There are a few things in here that fall back on the relatively toxic thinking of "wish yourself better" or "nothing happens without a reason" but they don't go too far into that, so it's alright. And, admittedly, I did sort of get taken aback by the power of the Buddhist notion that our hardest lives are the ones where we get closest to enlightenment. I hadn't heard that idea before. I rather like it, though. 

That's all this book is, all any of these illustrated books are, is an arrow yelling "Focus here for a minute!" 

But that's okay. Sometimes it's the best kind of book if you're in the right place. 

I enjoyed "Open When..." and with new medical diagnosis and more tests looming, I probably needed to look at this little piece of paper happiness for awhile. I intend to give this as a gift to a beloved friend as well. I feel like these are meant to be passed on and make great gift ideas. 

Also, there were all sorts of crafts dealing with Open When letters that I had never thought of until reading this. That alone is kind of cool. 

*I received this book from Blogging For Books for this review*

Monday, March 20, 2017

Carrying Stuff

More on the parenting side of things than anything else, I wanted to talk about what you use to carry around kid essentials-namely diaper bags. 

I have gone through one purse and one backpack in the past six months, the former because my baby decided to put a mostly unfinished ice cream cone in the main compartment, and the latter because one of her calorie drinks exploded in it. Neither were successfully machine washable: although, on the purse, I hardly tried because the mess was so terrible. 

My now ruined Lassig backpack I scored on sale, and it did a good job of hauling enough supplies for long trips with all three kids, but in the Texas heat, it meant sweaty back syndrome. And possibly some sore spots depending on how heavy you packed that thing. But it lasted us over two years, so I can't really complain. Very few things can stand the impact of a high-calorie baby milk explosion. 

So, I was left diaper bag-less. Which is miserable. 

I stole one of my older children's backpacks they weren't using anymore while I decided what type of bag I needed to order for a few days. Man, that just proved to me how important the design of what you carry everything for your kids in really is. 

From experience, if you are a pumping mom, get a backpack with a space to carry iced bottles. I had to do that separately for my baby, and it was a pain in my life I did not need. 

Luckily, we are past that stage (though a compartment like that might have saved a diaper backpack from a milk explosion...). At this point, I just need a supply hauler. With drink slots, because sippy cups can leak and it's easier to hand the older kids a drink when I can see it. That left me a few choices. 

I could go with the super cheap store generic baby-looking bags. They are roomy. And, cheap. Which is good, but right now I couldn't get myself onboard with carrying around something with a doofy looking cartoon baby animal or ABC blocks on it. If I had to, I'm sure I would. But, seeing as how I have to carry this everywhere I go, I don't want to. 

On the other end, you have things like Jujube. With somewhat cute prints and collaborations and the promise of machine washable, it was on my list. But I can't see spending almost eighty dollars on a mini-backpack. Or over twenty on a clutch purse. Some people can justify it, I can't, and I wasn't even sure the largest thing I wanted to buy would do the job I needed it to. 

I had a Skip Hop messenger bag for the first year of my youngest's life, and it functioned, but they are hard to pack for three kids and even harder to find what you packed. I wasn't interested in trying that again. Especially since we use cloth diapers and training pants and that requires more space than usual. I bet they work fine with one kiddo. 

What I settled on isn't even marketed as a diaper bag. 

Touted as a line of bags you can survive a long convention with, The Bag of Holding has several versions and is available on ThinkGeek and Amazon. 

I thought, hey, I need that kind of room. I really do. And I wanted a messenger bag to avoid sweaty back syndrome in the summers. 

And, thank goodness, it has drink holders on the sides. And compartments. For someone who loses everything they own on the regular, that has helped me tremendously. 

Also, it's cute. Adult lady cute, and not adult carrying-around-printed-baby-thing cute. And the zipper pull is a 20-sided die. That's freaking adorable.

I'm okay to carrying this to doctor's appointments alone, it just reads as a roomy bag. 

For long outings, it works fine. Everything fits. Including the cloth diapers and wet bag. Sometimes even the library books.

My one issue is that the material on the strap slides around on your shoulders, more often than not I will find myself holding it in place. That seems like a big deal, it's still workable, but it might be worth changing out the strap for if you can find something nice. I can position it fine while carrying my toddler in a ringsling as well. 

I might buy from this line of products again if this somehow gets destroyed (though I think it's pretty hardy). They are functional and quite affordable. But, I will most likely try one of their other designs. Hey, by then, I might need to carry less stuff. However, for adventuring, being able to haul a lot is ALWAYS better. 

What did you choose for your diaper bag? 

Sunday, March 19, 2017

Game Characters to Inspire the Rest of Us.

If you're around my age (32) you probably at least heard of Galerians. It was an old survival horror game (and those weren't super easy to come by, especially good ones, back then). If you were a fan, you probably even saw the DVD release. 

Yeah, I know. The backstory was actually cool enough for them to bundle and use as an animated film. Okay, it's not life-changing, but here is what was cool about the story:

The main characters have health issues. That doesn't happen super often in fiction, but this is more common in horror than most other genres. Rion, the main character, wakes up in a hospital with nothing known about anything other than he hears someone asking for help. In order to fight back against enemies, it requires you injecting yourself with various medications. It's clear they aren't healthy medications-it's just a tool to get enough psychic power to survive the onslaught. 

For people like me, who had run-ins with taking medicine to survive since being a teen, it meant a lot to see it in a protagonist when I played these games as a young girl. 

Rion also eventually knows he's marching to his demise. And it doesn't stop him. It doesn't even seem to slow him down because it's for the greater good. Selflessness like that is hard to write, hard to make work, and it does for this character, even being young, and in serious danger, and sick. 

If that's not enough reason for you to look for a vintage play-through of this intense game, you can get the DVD. It requires none of the gameplay frustration or investment, and it has a great soundtrack. 

A close second in terms of seeing something relatable and inspiring within horror is American McGee's Alice: The Madness Returns. 

*hands down, my favorite moment in this game* 

I once read a letter from a woman to the creators which was made public about how Alice's story inspired her to keep going. I know I keep saying it, but that is the gold in this genre. 

The main character is subject to all kinds of manipulative malice, and her tools of survival are channeling her own darkness and finding out the truth (ideas often still thought of as unacceptable in modern society, so that right there is really important). I found The Madness Returns to be a bit long, and it didn't give me any scares the way Galerians did a few times (might have been that I was an adult when I played this...), but it was not absent of fun at any of those moments. There was always something worth looking at onscreen, and if the triumph over dark and dismal interest you, you will love it. 


 For the first time in ten years, I was unable to walk the nature trails near our home with my children. My husband and I had even hiked the several mile ones for our anniversaries. This was bad. I was able to keep calm even though my heart hurt in my chest, but it was scary. And it was sad. 

The next day, we were able to take everyone swimming. Same story. I started out feeling better, but a slight movement of my head sent everything spinning, and I spent the rest of the time just lightly playing with our youngest on the shallow steps. 

Scary and sad, scary and sad are just the rhythms of the day. Especially as I wait for real answers. 

And I can look out into the world and see people still living-living normally. And it hurts that it feels so far away now. 

Chronic illness is a barrier. It's an intruder, a rapist, a thief. Mixed into that, growing up in dysfunction sends you the message that you really are only as good as the stuff you can do for other people. 
Waiting for this next round of tests, one of which will be done without access to my arrhythmia medication, I've kind of uncovered some feelings of depression. I'd had some signs for a long time, since my last miscarriage a little over three years ago. I stopped being able to enjoy doing things I'd felt I was decent at or had any meaning to me. Eventually, I was unable to create anything not motivated by a grade. I'm still fighting that.
 I stopped taking care of my hair, except in small bouts, and just wore it up in a mess of dreadlocks. Often overcome by pain or fatigue, I don't cook the way I could before. I don't want to make art, I don't want to write. My safety net is that having kids forces you to be out in the world, and that does help, but it feels impossible more often than it ever used to before as you struggle to sleep, to move around, to eat, to prepare. And so few seem to understand. 
But you keep fighting. Fighting while waiting. And trying to figure out what sort of balance you need to set in your life for as long as you have to live it. 
One thing for certain is that I, finally, need to take care of myself.