Saturday, April 29, 2017

The Ethereal Of Everyday.

One of my friends was talking about looking back on pictures of our kids when they were smaller and how it almost always moves you to tears.

All those sweet moments. It feels like they slipped through our fingers like some ethereal, beautiful light. 

How lovely, and how sad in some ways. To have something so lovely and then watch it change into something equally lovely but not the form you once knew. And those kids are always growing, always changing. Always amazing me. 

I still feel sad and angry sometimes that my diagnosis prevents us from having any more children. Some people might risk it, but generally speaking with PH, it is a bad idea. A scary one. 

And, the truth is, I think I'm tired. 

No, I know I'm tired. Like falling asleep standing up tired. And I have been for a long, long time.

Special needs kids often don't sleep well or as long as they need to. Which means you won't. Though, even with that, I feel like we got pretty lucky because it's not as disruptive as what many struggle with at all. Motherhood, in general, is an exercise in true sleep deprivation. Ideally, we'd all have enough competent help and kind help for it not to be our reality, but for many of us, it is. You don't get a village. You might not even get a neighbor. 

My youngest was born early, I was still deteriorating for awhile and yet we had to jump right into therapies to help her survive and get better. The tired never stopped. The sleep never came. She was eating every hour and still not getting enough food. The treatments for her continued even as I sacrificed more sleep by taking on hours at the university. On top of a move to a larger home, I look back and am not sure how we did all of this. How I did what I did on most nights of no rest and complete worry. I don't believe that I could do it again. Though, I would and more for any of my kids. 

To be honest, looking at my friends with new babies all I can think of is how tired they must be. 

Did I mention that being that exhausted all the time will get in the way of treasuring the moments as our kids grow up? Because that is also a thing.

Having another newborn, I can't even imagine what functioning would look like. What the new exhausted would be. So, that's definitely a dream to go on a shelf, one to be examined from time to time, but not opened again. 

I find myself looking forward to what days are like when everyone is in school. What writing more feels like, doing more. Having the quiet that has been missed for so long that I can't remember it. 

What am I when I am unrestrained by taking care of people at all times? Do I even remember, or will it be something entirely different from who I was before having my children? 

It doesn't make your body failing and forbidding another pregnancy easier to deal with, it is its own grief process. Talking to other people, I'm not sure it's even a process that ends. For those of us who wanted that family above all and everything, I think it will always hurt. Always. It's easier having been able to have our three, but it will always hurt. And it will always make the tired seem like a fine tradeoff for getting to have another amazing human being around. 

These crazy, frail human bodies rarely line up with the dreams we have for ourselves. 

So, I try to dream of other things. Bigger vacations. New fashions for everyone. More toys for them, and more new experiences. More work time for me, more quiet time with my husband. More sleep, more school involvement, more in general, because people forget babies take so much. 

We forget because it always seems so worth it. 

Monday, April 24, 2017

The Green Cycle

I sort of missed this post by a few days. Earth Day found us with gross new respiratory viruses, and you can find us with them still. This is the fourth one in three months. 


Anyone who gets anything beyond the minimum done while sick is a hero. 

We didn't get to do our usual nature center thing this year for Earth Day, and I'm kind of sad about that. We didn't even feel good enough to start our yearly planting yet, which we always have done traditionally on this holiday. We did watch Bill Nye Saves The World on Climate Change, but that was really about it (Is it weird I sort of prefer the Science Guy kid shows over the new one?).

It got me thinking about how the little stuff might matter in terms of being planet-friendly. 

And that got me thinking about the best part of cloth diapering. 

When you're finished or have moved onto training pants, you have something valuable to give to someone else and their baby. 

Today's cloth diapers are extraordinary. No joke, they are fantastic. But you pay for that. Hundreds of dollars upfront for the 18-24 you need in that first year. But since they don't fall apart with the use of one or sometimes even two kiddos, once you don't need them anymore, you can donate what you have to help another person. I have a lot that were gifted from friends. 

And, isn't that cool? That at the end of a milestone in your baby's life, instead of a pile of garbage, you have a gift. 

Some people can even resale their diaper stash for a profit, but there are tons of places that need our help and donations, too.  or any of the charities listed here at are great choices. 

Diapers, even disposable ones, are pricey. And having diapers that are reusable means you don't have to choose between buying them or food. As long as you have a way to wash them, your baby is covered. 

Also, they are really, really cute. But that's just extra. 

Littlest almost two years ago
wearing a BumGenius diaper, which is my go-to. 

I do get it, they are more work. It's not a solution for everyone and probably shouldn't be brought up as one: even to the problem of going green(er). It's extra work to take apart a diaper that needs cleaning, it kind of sucks to have a stanky wet bag hanging around to be laundered every few days, but I can tell you I feel like it was worth it. There were so many days I was grateful to never have a diaper emergency or have to buy less groceries or other things we needed because we had to purchase disposables. And the truth is they stayed on better. We had a baby who was incredibly tall and thin, and keeping disposables on her once she was mobile was kind of a nightmare. 

I'm glad this was a choice I made for my last baby and glad that her diapers will soon be going to people who need them. 

I feel like that's Earth Day in a nutshell. Help the planet and help everyone else in the same stride. 

And, yes, I'm buying cloth training pants for my toddler. Have you even seen how cute those are? Plus, like diapers, training pant disposables can break the bank until your child is nearly fully trained so you save on that, too. 

With any luck, we'll all be up and gardening next week. Hope you had a fun and thoughtful Earth Day. 

Earth Day Graphic.

*By the way, feel free to grab the images I share as my own personal artwork on here (My work on this blog won't be tagged with credits). If you ever want to hire me for any of your specific design work, click on the "Portfolio" button at the top left of the page and it will guide you through how to do that. Writing is my passion, art is my support, so thanks to anyone considering it. 

Monday, April 17, 2017

The Easter I Realized Our Libraries Had Raised Our Kids.

Usually, by the time actual Easter rolls around, all of the kids have already had two or three egg hunts, but this year it was impossible to balance that and other events. 

So it was just me and the toddler who got one extra library-hosted egg hunt in for her age group while my older two were in school. It was in a location we'd been to very often when the eight and ten-year-old were babies and preschoolers, but it's so far now that we rarely visit except for special occasions. 

It was strange being in the exact same library toddler room as I had years and years ago with my first two kids. And the faces of the women had changed-the ones I'd known were long gone, their children far older now. But the librarians were the same. 

And they remembered us. Us as an entire young family.

I was stopped on the way out, my daughter dancing happily with a basket full of candy and eggs, when the front desk librarian said: "This is the BABY?! Where are those two other almost grown adults you gave birth to!"

It took me just a second to look at her face and have all the memories of the great interactions this woman had granted us years ago come back. 

My children grew up at the library.

My first daughter learned to crawl among aisles of books, and learned to stand by holding onto the wooden bins overflowing with board book stories. 

My son was just days old and riding in a sling across my chest when he first went through the library doors. His first Christmas concert happened at a library. 

My youngest was one of the newest babies to get a summer reading certificate. When her physical therapist suggested we learn ASL to communicate with her, we found free in-depth lessons from the programs the local libraries offered. 

My toddler is quickly learning what her brother and sister already know: that libraries are some of the best places on Earth. 

When we had children, I really had no idea how to do anything right. That was terrifying. 

I just knew that this place was one they needed to know, and it needed to happen as early as possible. 

Because it was my haven, too. 

It was where I learned to cook, where I spent hours with the few friends I had writing research on index cards to complete high school papers. It was where my husband took us on our three-year anniversary. It was where I learned how to be a parent. Countless books and films, from baby names to potty-training to getting the kids ready for college years, I found it at the library. I even had a baby shower there. 

My children's art lessons are held there. Their robotics classes. Their Valentine's parties and their video game sessions-it's there. 

The libraries surrounding us have helped us as a family every step of the way. 

And they helped me survive. And they continue to offer a million ways to be a better human being. 

Libraries and their staff can make all the difference in the world. 

Support the heck out of them, please.


Monday, April 10, 2017

Fast Happy.

I'll admit, being weighed down with illness means we probably hit the drive-thru more often than we should.

But there isn't much more happy to me than spending a day out playing with the kids and grabbing a nice, easy, peaceful meal that all of them will eat-no meal prep, no intense last-minute shopping, no worrying about giant clean-up of dishes and pans. 

It's fast food, but it really is a kind of happy. 

For the kids, too, not just because they think the food is a special treat, but that their parents are less stressed with dinner taken care of. And eating at the establishment also creates nice memories, and we do try to squeeze that in. 

Being plus-sized, I'm still not interested in what anyone has to say about us enjoying that (and, yes, everyone else in our family is a healthy weight, it's just me, and it has been from birth). 

We have days where I can make a whole wheat veggie pizza, or salad with baked chicken breasts, or vegetarian quesadillas with avocado. But that's not every day. 

One thing about chronic illness is we over-do it on normal everyday stuff. You use everything you have taking the kids on an outing to a park, or museum or the beach and you have so little left for intense tasks like cooking from scratch that it becomes physically painful. 

No. Thank you. 

With whatever time I have left, I will absolutely cherish that fast food happy. I'll order the vegetables with my burger, but rest assured, I am super happy. 

Because some days you have to trade the homecooked stuff for time and energy to be with the people you love and do what you love. 

I found a series on Amazon Prime called "Fast Food Mania" and I swear to you the technology used in your favorite food joint is downright impressive, and most people's attitude toward customer service is quite lovely.  

That's wonderful considering many times what these cooks do is undervalued (Anyone that makes it so that I can feed my family decent food without being stressed or in pain needs a pay raise and a personal thank you) and we try to frequent places where the workers are taken care of well. 

I think, like everything taken in stride, that guilty pleasure food is a working part of a complete life. A good life. 

It's definitely a fast happy, especially here in Texas where we have some cult-like followings of great fast food chains. 

One of the most striking things on the "Fast Food Mania" series was seeing an elderly couple be named the biggest Whataburger fans for eating at the most restaurants. They looked smiling and lively, which is not the picture anyone who demonizes easy access food ever paints. That's a lovely adventure, in my opinion, just destination after destination of fast happy and good food at an older age. 

I asked my husband if we could do something like that when we were older-or however close to older I can get. He said we could do a Texas tour of something, but not fast food. 

He probably has a point. 

While I don't think fast food deserves to be portrayed as the devil, I'm not the shape needed to process eating out anywhere that often. Maybe we can visit all the nature centers. Or state parks. Or art museums in Texas. And probably stop to eat at a few awesome fast food joints on the way. 

Sunday, April 9, 2017

Accomplishing Anything (at all).

Trying to get things done with PH is weird. You get motivated, but you're so tired, you work hard and then your chest hurts, you notice you aren't breathing right. You finish that task but are so wiped out that you are dragging the ground to complete the next one. You're always wondering how you can keep up. 

That's how it goes. That's how it has gone for me for the past few years. And while I'm hoping treatment changes that, I have noticed that at least understanding what is going on helps. Knowing why my heart rhythm is sometimes insane and knowing my triggers has made avoiding episodes easier, too. 

 I realized that if I rest between things, if I ignore the part of my brain yelling at me to finish everything RIGHT. THIS. INSTANT! then I can get something done, something accomplished. 

Maybe it's nothing compared to what I could do a few years ago. Maybe it's nothing compared to other people, but for me, it is the difference between a good and bad day. 

It's still frustrating not to be able to be out and about every other day of the week with my kids. They only get one childhood and one of the ways we show them we love them is to try to let them experience fun and great new things. 
We changed outings to more frequent at
home stuff, like homemade playdough
, renting movies, and trying to remodel the backyard into
a more kid-friendly area for exercise and play. 

It's hard giving some of that up. That and feeling so tired that it's a juggling act to keep up with daily chores makes you feel totally inadequate. But, that's life now. 

You have to rest. 

You have to slow down.

You have to do those things in order to keep moving.

And moving is the important part.  

Writing is still hard right now. I do wonder if painting might be easier, sometimes. Words seem to escape me quicker when my mind is fluttering with so very much, when I am still processing everything. But, I've been able to help a friend as she gets ready to fight her way into the ring of indie publishing, and that's helped a lot. The exciting part of indie is the new blood coming in to change everything we thought we knew. And I learned from my mistakes by helping her, too. And I made a lot of them. 

But, like everything, it's a one task at a time pace. And it's slow, but it's mine. 

It doesn't help our home we bought just two years ago needs so much work and updating. My projects are mostly with the backyard, but encompasses everything from the inside ceiling fans to the molting trim outside. A new/used home is a privilege, it sure as hell is, but it's an extreme amount of work and cash to finally end up with something that works for your family. And moving as slow as I have to now leaves so little time to get that hard stuff done that it's frustrating. 

I feel better, better about everything, if I can get something accomplished. 

Slow down.
Keep moving. 

Monday, April 3, 2017

The Dream Thief.

I've lost two of my five children. Both late first trimester, one in a clinical setting and the other at home, both requiring surgery. 

It cut me open in ways I didn't know human beings could be hurt. 

What got me though those was the idea that I could try again. When and if I wanted to, that door was not locked. In the case of our youngest, even being on hormones could not stop my body from wanting to carry another baby: and thank goodness my body was smarter than I was. In so many ways, though I hope to never put the pressure on her of telling her, a new baby helped us stitch life back together. 

Pulmonary Hypertension comes with severe changes. One of which is that in almost all cases, even if you are in the mild category and things like sleep apnea therapy help, pregnancy is very dangerous. 

It was present the last time I carried a child: and she and I spent most of that time in real, painful trouble. 

We're hoping we see real improvements with treatment now, but even if we do...

A mortality rate of 30-50% with PH doesn't feel good enough...To risk leaving your family over a coin toss for your life? 

Women who've had children and survived with PH seem to do a little better, but for the most part, this closes that door we've always had. It puts a heavy lock on it. Of all the changes this brought, I resent this the most. 

I hate having parts of my life taken from me. I hate it. 

And that's the reality for so many people who struggle with things like infertility or who even got their diagnosis of severe PH before starting their family. It's a different, harder level of hell in those regards. 

But I still hate it. 

Everyone has dreams. Those things that you can conjure up logical reasons not to want, but you never stop thinking about them. I didn't want a quiet house. I didn't want a fancy car or a vacation. I wanted a home full of life and noise and that never had time to be fully cleaned. I wanted to be busy. I wanted a big family. I wanted that life.

I kind of got it. I'm so grateful for that. 

I still hate having lost my two babies that didn't make it. I still hate having that door closed on me because of an illness. I didn't get a choice, or a say, it wasn't a decision.

It was theft. 

A set of dreams stolen and barricaded away where they can no longer be reached. 

Of all the things this sickness has taken, I hate this the most.