Chronic illness and bad parenting

I have insomnia, a side effect of a rough decade and chronic illness. That's why I'm up writing at 04:30, instead of sleeping. With that said, and it isn't a pretty thing, let's talk for a minute about parenting while chronically ill.

You go to bed tired, you wake up tired and you go through your day like a zombie. Sometimes, it hurts too much to do the things any parent wants to do with their child- cuddling, playing, running, jumping... it all comes with the fine print of "if my health holds, if it's a good day, we can.". I spent today exhausted and hurting. I spent a lot of time in my room, where I can sit and feel safe and be in less pain for a bit. Every minute that I was, I asked myself, "Am I a bad mother?".

The answer isn't simple, and the question holds so much hurt to think about. I am not a bad mother. To be a bad parent would be to push myself to the point of worsening the URI I'm still fighting, and having to leave my son to be hospitalized. It would be ignoring the pull that's like a hook in my heart, that makes me want nothing more than to hold that gorgeous little boy and cover him with kisses. To be a bad parent would be to hide in my room for the hell of it, to not to be with him. It isn't easy, but sometimes when you're ill, you have to do things that look bad from an outside perspective.

If you're a parent, and you have a chronic illness, remember on your bad days that having to lay down or spend time away from your baby does not make you a bad mama or daddy. It makes you an adult that cares so much for your child that you deal with the pain of not seeing the milestones of that day because resting means you can be back on your feet sooner. You're a warrior. And no matter what, no matter how poorly you think of yourself, you are loved deeply and unconditionally by your child. They see their parent hurting or sad or fatigued and what they want (even if they don't have the words to say it) is for you to feel better. That's all. Your baby holds no grudges toward you, they don't think you're being lazy or withdrawn.

Above all, when they look at you on a bad day, they don't see the illness. They just see mommy, and bad day or good day, that's enough for them.

The Letter

It's the day before Mother's Day, and this post comes with much hemming and hawing over whether or not I was going to have the guts to write about something painful the day before something so happy. But because those are the kind of things that coil around your brain, and like a python, squeeze it until something comes out or it stops twitching. For many, many years, Mother's Day was purely a painful day for me. It was a reminder that my own "mother" had treated me like a punching bag, and that (years later) I'd lost a glowing little life that had started in my belly. That little life is the reason I write this.

Dear Dahlia Rose,

It's the evening before Mother's Day, and I'm sitting here on the couch with your uncle and your daddy, watching them play video games while your little brother munches on things in his highchair. I miss you. I sometimes feel incredibly, deeply, guilty that I still miss you so fiercely when I have your brother here to hold- but I don't think you'd want me to feel guilty. I think you'd want me to remember that grief isn't something that mysteriously passes. That it isn't something that's the same for each and every person- what might be life-altering to someone may be a shorter grieving process, or simply a different one to another. I don't think you'd want me to feel sad this year and I do know that I've let you down in that. I'm always going to be a little bit sad. This year though, darling, it doesn't feel like my heart is trying to break through my ribs with how much it hurts. It's more of a sad thought that comes up when a song plays on the radio, or something reminds me of the time we were so lucky to get to have together.

I have the same things I think about, though. How you and your brother would be playing, if you would've gotten along. What color would your hair have been? Your eyes? Would you have had the jet black hair I was born with? Or would you've been blonde, like your brother? I think that if I stopped myself from thinking about these things, it would do you a disservice, and it would feel like shoving you to the back of my mind (or out of it) simply to feel a little bit less. And sweetie, I'll take every single emotion that the world can throw at me regarding you, because it means that I'm getting to experience something with you. Not physically with, of course, but in spirit. Love and pining go together. You don't know how much you love someone until you look next to you and they aren't there anymore.

Speaking of that-- are you keeping your Opa on his toes? I'm certain that you are. I bet that wherever it is that you are, you're as much of a little troublemaker as your brother is. He's a good boy, but I know that you and Uncle Mark visit him. I've woken up in the early hours and in that haze between  not being asleep, but not being awake either, I've seen you. I've felt you. I know what your Uncle Mark feels like- he's my twin. It would be a sorry thing if I didn't know. And as strongly as I know that, I know that you've visited your little brother. I hope that you're the one he talks to when he's playing by himself, and sharing his toys with the air. It's been a rough year for us all here, baby. There's been a lot of stress, and a lot of hurt. There's been a lot of love, though, too. You know me-- I'll take that gallon of stress for that bit of love, any day.

Did you see the roses that bloomed outside this year? I was talking to the gardener, and I asked why there was only one red rose bush in a group of whites and pinks, and he said "Oh, it wasn't planned that way, it just happened." and I knew that you were saying hello to me in those blooms. You weren't planned, and your leaving wasn't either-- but as long as you were ours, we did our best to help you bloom. There have been butterflies all over this year as well, something that I've always assocaited with you. The monarchs follow me (in all fairness, it may because they think that my pink hair means I'm a flower), and it's nice. Froggy and I go to the playground and sometimes, I'll just sit and watch the butterflies flitting from flower to flower. Every time we're there, one will come close enough that if I didn't know it would hurt them very badly, I could reach out and touch them. Your brother chased one the last time we were there, giggling hysterically and reaching out to it with his hands, a huge smile on his face. Were you playing with him, dear?

Tomorrow will be hard. I know that it won't be as hard as the first one after we lost you. It won't be as hard as the year after that, or the year after that. Each year brings a new way for me to cope with your loss. I think that maybe tomorrow, I'll take your little brotherface for a long walk, and we'll count the butterflies and roses that we see. I'll draw something tonight, like I always do, and in a few months, we'll be baking cupcakes for your angel day. I've met people over the years who see that I'm still celebrating you, and trying to remember you, instead of trying to push the whole thing out of my mind and never speak of the matter again and they tell me that they don't think I'm doing the right thing. They tell me to just "get over it already" or that "no other women carry on like this. They just move on with their lives.". But that isn't true, little love, every woman will grieve the loss of a pregnancy or of a child differently. They'll all move forward at their own pace, and in a way that is best for them. Some might want to forget. Others might want to do something for mothers and fathers who've lost a little one. Still others yet, might sing or dance or draw or bake or cry. They might sleep the day away. They might write letters to their children. They might sing and lift their voices up in prayer. Every woman will be different.

I've written you many letters since we lost you. Some of them, I've posted in places that are public, but the majority of them I've kept to myself. This letter was going to be one of those-- and then I realized that the only reason that I wasn't posting it was because I was afraid of negative comments or people telling me that I was being too depressing, too maudlin, that this wasn't something to talk about right before Mother's Day and ESPECIALLY not as the most recent post during the launch of this blog. But then I thought, "Why? What's the point of a blog, the point of putting your innermost thoughts in a public forum where the whole world can read if they'd like, if you censor yourself? If you want to change something, change the way that all human beings grieving are treated when talking about their losses, then you can't be afraid to put something taboo front and center.".

Baby girl, you've given me strength. You started my dream of being a parent. Your loss gave me such an incredible feeling of hopefulness, of fear, of wonder and of how incredibly lucky I was when your brother was on the way. I think it's only fair that this letter to you- the tiny thing that started me on the path of being a parent, a seahorse and a mother- is the first thing that people see when they come to this blog during its launch. I love you so much, and hope that you know that. Give Uncle Mark, Opa and Grampa Cal a big hug and kiss for me-- I'll see you when I'm starstuff, baby.

Love,
Mama

In Which There Are Pictures, Stories, and the Chaos of Life

Hi there, fellow humans! I figure, this is a parenting blog-- so there's gotta be the obligatory pictures of my adorable child and family.

I see what you're doing there. And I approve. 

This is from when Froggy scared the ever-loving crap out of us when he was four months old. He had come down with something called RSV. In older children and adults, RSV is like the common cold. But when tiny, little, babies (he was just barely 3 months at this point) get it, it's a Very Bad Thing. The passages that carry air to the lungs (airways, bronchial tubes, sinuses, etc) are incredibly narrow. The doctor in the NICU showed me a stick of spaghetti, and told me that it was roughly the size of my son's airways.We had taken him to the UCI ER three times, since the hospital had all his birth records. The first time, he had a rattle in his chest. The second time, which was the next night, his rattle had turned into him sounding like he was breathing underwater. The next night, the voice of reason that was saying to listen to the doctors took a vacation. Froggy was just lying there in my arms, laboring to breathe. He'd finally started resting when I took this picture. 

This was in the PICU (pediatric intensive care unit). Everyone that came in had to put on a robe looking thing and a mask. They suctioned nose and throat with this weird machine (he hated it, obviously), and got antibiotics into him. He was transferred to a lower floor a few days later, and slowly but steadily started improving. He ended up having something called a 'bronciopsy', where they put him under anesthesia and looked in his bronchial tubes. I was allowed to hold him to comfort him (and me) while they put him under, and I noticed that not only was he not getting sleepy, but his arm was cold where his line was, plus he was just crying and crying. I politely asked the nurses if that was normal, because it felt to me like his IV had infiltrated. They told me it was ok, totally normal, blahblahblah. However, my Wolf Mom instincts kicked in and I demanded that they take a look. They did, and I was correct. They redid his line placement, and after he was under, the nurse walked me out to the waiting area. I remember her telling me to expect to cry or some huge, unexpected emotions. Since I was pretty chill while I was walking out of the room, I didn't think anything of it... and as soon as the doors closed and I couldn't see, hear or get to him, I realized the nurse was right. I cried. I vomited. I wanted to rip the doors off their hinges and grab him up. Robby calmed me down, and in a short time that felt like forever, he was done and the results said that everything was okay. ^_^

Since I'm King of All The Things, I did know that with patience, pain and hard woke, someday my prince would come. ^_^

I love this one. Robby looks so happy to be holding Froggy, and Froggy looks so relaxed in his daddy's arms. I love my boys so.

This is me, the House Human, with my grumpface on and hair that the box told me would be purple, but became a pretty cool gradient. It took a while to grow on me (no pun intended... maybe), and now when I go for walks around my apartment complex there's always at least one little kid out of the horde that runs around playing (our community is safe enough that kids to go out and play without their parent hovering over their shoulder) 

I will forever and always keep this picture, because Leo is one of the toughest guys I know, and this totally compromises his bad boy image. He's one of the most hard-working guys I know, and I wholeheartedly think that if we didn't have his help (and Sebby') we'd be much worse off until we adjusted.

"Daddy, this is really fun... but you've got me, right?"

"Always, buddy."

August 25, 2012. The day that this little boy, my impossible little man, was born. He slept amazingly, and didn't make too much of a fuss at all about being in his bassinet. He hated being under the bili light, so I'd move a chair as close as I could (pro tip: I had 14 stitches in my downtown bonanza. Don't move chairs when the most sensitive part of your body has stitches.) and I'd rub his little belly till he calmed.  

My photogenic little man, curled up in the boppy, on the blanket that his Aunt Kathy made for him. I still can't get over what an amazing little human I made.

My child is apparently part otter. He loves that toy SO much- along with pretty much everything else that's yellow. The fish that the's got is technically a diving toy... .but whatever. If he's happy and not in danger, I'm happy. 

This is the most recent picture of me, the House Human. And yes. I AM the Doctor. 

(Picture taken by: Jason Matson)

....yeah, this pretty much sums it up. 

 Goodnight (or morning), my dear readers, and I hope that the coming day will be splendiferous, and that you're currently sleeping much better than I am  o_o

As always,

The House Human

In Which This Introduction Is Cut Short

Welcome to The Life and Habits of the Domestic Human! I'm Loki, your guide through this crazy thing, and house-human extraordinaire. You're probably wondering a bit about who I am, and why this blog is titled like it is, so here's the obligatory into!

My name is Loki - yes, like the "guy from the Avengers", but more specifically, I'm named for the actual Norse god. Yes, my mother* knew what she was asking for when she decided that that was the perfect name for me more than halfway through my currently lifespan. I was born with a different name, one that's plastered across all my secure documents, ID's and everything official. But nobody calls me that (and lives) except my grandmother. I'm the proud parent of a 19 month old (just over a year and a half) little dude, who on the internet goes by the pseudonym of Froggy on the internet. He's an amazing little guy, and is pretty much the point for this parenting blog. I'm married to an absolutely excellent guy, who make me laugh and drives me up a tree, just like every good husband should. He's one hell of a great father, to boot. Seriously, this guy was born to be a dad. I might have zero clue what I'm doing on the mom front, but he's got this all down pat. We live with four furkids (three cats and a ferret), and our wonderful roommate, D (who I may also refer to here as 'Leo' from time to time).

We're an unconventional family, but everything that makes us different from the normative family structure is what makes us strong. I'm a gender-fluid, pansexual, mortician-to-be, with dreams of getting degrees in forensic and religious anthropology. My husband, Robby, is a history major, who wants to go forth and educate the chaotic, vicious, unwashed masses that make up high school history classes (I jest, they're not unwashed... mostly), he's a brilliant story teller and loves tabletop RPG's, video games and historical accuracy. D, is a trucker who's seen every state, has stories that could entertain for years, and is one of the strongest people I've had the pleasure of knowing.

Aside from this intro, in which I tell you all the things that might come as a huge shock should you read through this blog, the intent of this blog is to talk about parenting. So, sit back, and let me tell you the story of my impossible boy.



This is the story of how I died.

It was in August of 2010 when my adventures started. I had found out that within our first year of marriage, I had become pregnant very unexpectedly. We'd been using birth control, and being very careful-- but that little one was determined. She hung on for 8 weeks before (unknown to us) her heart stopped. At 12 weeks, it was confirmed that I'd lost the baby. We went through a very rough time after that, but as the years have passed, the ache has turned into something else-- the want to share with all of you that it does get better. It'll never stop hurting, but it'll stop feeling like your gut is full of stones and your heart is breaking. We named her Dahlia Rose, and mourned her. At this point in time, it's been interesting to think of-- I lost my twin while my mother was pregnant with us. Froggy lost his older sister. Maybe he'll have that special bond with her, even though she isn't physically with us, that I did with Mark.

Due to the complications of the miscarriage, and a slew of chronic health issues, we were told that it would be incredibly difficult to get pregnant again and that the changes of holding on to the pregnancy were very, very slim. As we've grown to know, though, our boy is a stubborn one. In January of 2012, I found out that through some miracle, I was pregnant with my impossible boy, my rainbow baby. It wasn't planned and it was a bit terrifying for both of us. The pregnancy was very, very difficult. I had hyperemesis- essentially morning sickness that never stops, and which landed me in the hospital. After that were several dislocated ribs, a rash called PUPPS which sounds cuddly but is pretty much your liver not processing the excess acid and pushing it out through your skin, and stretch marks from hell that split and bled.

We'd kept joking that Froggy was going to show up on Aug. 25, because that was when the new season for Doctor Who was airing and of course, he was going to make mommy miss it. His due date was Sept. 14, but lo and behold.... he came three weeks early on the 25th. By the time he made his appearance, I'd been in labor for two weeks, two days and 22 hours. I had no clue that that sort of thing could even happen! But of course, it does happen, and it happened to me. I was exhausted by the time he was born. My mom* likes to joke that I'm not made for carrying babies-- but I sure as hell am made for delivering them. It's a badge of honor that when it came down to the pushing stage, I rocketed him forth from my loins in three (four?) sets of pushes. I knew what muscles to use, instinctively, and within moments I was holding a kinda greyish, alien-looking newborn on my chest. My mom relayed to me the things that I don't remember-- I smelled his head, and got this look of sheer happiness on my face, then announced to the entire room (minus my husband, who was vomiting in the bathroom because of a "bad salad" and totally not because he walked by the foot of the bed and saw, as he puts it, "Froggy's arm flop into existance") that I had a superpower and that it was making humans.

At that moment, with that first sniff of his stinky little baby head... I died. The person that I was before, the human being without another life completely depending on me, loving me and looking to me to teach him... that person was dead. It's buried and in the ground. This new person, this parent, was born as soon as he was. I've heard the term "Tiger Mom"-- and I am most definitely not one. I'm a Wolf Mom. I let my son play on the ground, roll in the dirt, taste various bugs, lick the cat, run around outside and learn what it means to be a kid, and to live. He's learning by experience. He's learning by example. And since the example he looks to like to have their husband drive them down a nearby street so that they can hang halfway out the window and look at the stars through the trees, he's going to grow strong and curious. He's going to find the wonder in finding feathers and climbing trees. He's going to learn by trial and error that you don't eat ants, and that if you run downhill too quickly, you'll fall and scrape your knees.

That little human is my entire universe. I grew him in my belly, like a seahorse, and brought him into a world that's full of so much to discover. This blog will tell you about our daily (or weekly if I can only update once) adventures, what it's like to be a mom with chronic illnesses, how I view the world and the how I'm teaching my child to be a good, strong, human being.

And also how I teach him to quit playing with his penis in the living room. Damn it. As all parents occasionally must, I'm going to need to cut this intro short and go put the diaper back on my now bare-assed child. For the love of the gods, kid... stay away from the sofa.

Cheers,
The House Human