I’ve been enlightened into the fact that many people think I’m selfish for bringing my son in to this world, knowing that he had a debilitating condition, and making him suffer through a life that is much less than good quality. That because Brayden will never have independence, he will never live a full and happy life. Let me make one thing perfectly clear…Brayden is LIVING with hydranencephaly. He’s not existing in a life with a selfish mother who just can’t bare to be without him, he’s independent in his own rite. He may not grow up and become a doctor or lawyer…but then again, he might?! Who am I, as his mother, to say for sure…and if I can’t, no one else can say for sure either.

So, if that’ the case, that a life of dependence is equal to a less than great quality of life…why wouldn’t an adult or child who isn’t born with a condition, but later develops one through stroke or accident or other disease, why wouldn’t they just need to be euthanized? They’ve lost their independence, so there’s no reason to burden the world with their existence and make them suffer through a life that is less than great quality in others eyes. Is that the popular belief?

What is a good “quality of life”? What defines good to one, may be a horrible existence to another. Some live a good life in their own eyes, yet reek havoc on anothers…yet, they’re allowed to live happily ever after without so much as a raised eyebrow to their right at a life, may it be good or bad. I’ve had the great opportunity to meet people who have changed my life for the best, but are living miserably ever after in their own lives. Who gets to make these judgement calls?

So, to those who want to think they know it all…and what should have, could have, would have been done if they were in the same situation, faced with the same obstacles….think again! And please don’t take it upon yourselves to write a script of my life, I’m living it and I know what the next line is or what the next scene may entail, I’m in charge.

I’ve been a stay-at-home mommy since my ‘lil hydran miracle Brayden (www.caringbridge.org/visit/braydenharper) was born almost a year ago. That’s right, there’s his website so please follow along and say a little prayer to the Big Man upstairs to keep him top of mind. Before that, I worked 5 or 6 days a week like a large majority of the population and a large majority of my friends and the people surrounding me. Some moms actually stay home with their kids, moms in the real world and not just on TV?  Before now, I never realized so many mothers were blessed with the ability to stay home with their kids, it wasn’t a part of my life growing up or anyone else’s that I knew. I’m adjusting, a year in the works, and I’m not sure I’m adjusting as much as I’d like…but I’ll get there.

So often I find myself wondering if this is where I’m supposed to be. To go from working 40-70 hours a week managing  a restaurant at crazy hours, sometimes into the wee hours of the morning…to where I am now, waking up throughout the night with a sad or mad baby or distressed girl with a bad dream to finally waking up for the day before the sun shows it’s rays to get the kids ready for whatever the day holds. My days are no longer filled with schedules, training, teaching, coaching, interviewing, budgeting, finances, paperwork, liquor/beer orders, food, and the heat of a kitchen line during the battle of dinner time! They’re now filled with appointments, play-dates oftentimes missed, doctors offices, cleaning of the same things over and over, laundry that makes babies in the baskets, dishes that won’t wash themselves, floors that are forever sandy, kids that are either happy and playing or talking a million miles a second all the while or arguing with an attitude comparable to a teenager’s and last but not least, a special needs baby that makes me jump with every new noise or lack thereof in wonder of whether he’s ok or if this could be “the day”. Then there’s the hubby that comes home from a long 12hours at “work” (right now it’s school) and finds it entertaining to make comments like I sit on my butt all day watching tv and eating the stereotypical bon-bons…what is a bon-bon, anyways?? To that, let me just say that I’m sorry I no longer make money to bring in to the household…sorry for being worthless.

He would never say worthless, or even think it for a second, but sometimes that’s how I feel. Maybe it’s not how I feel, but how my emotions seem to take over and it’s not always the best thing. I even know that he knows how important it is for me to stay home with the kids, not just because Brayden has special needs, but because it’s better and less cost than working to earn the money that will be spent paying someone else to do the job I could do easily, the way I want to do it! But somedays, I want to be the one to come home and do nothing…change into clean and comfortable clothes that are put away where they belong, play a computer game for a couple of hours, tune everything out and watch tv, make dinner and eat it without cleaning it up, then crawl into a comfy made bed at the end of the day to wake up the next morning refreshed and have everything I need where I need it when I need it…from laundry to any other needs…everything neat and clean without having to lift a finger, ever. I can sit here and know that I’m appreciated, but more often than not, I don’t feel it. That part is hard for me?!

We’ve been married for almost 6 months and together for almost 2 years…but friends for much longer. “WE” isn’t the problem nor is the marriage at all. Before we were married, he was in my surroundings…he was the one without a home of his own, so he was in mine. Maybe the difference is that I didn’t work to get this one, I’m not stressing about making enough money to pay the bills and take care of the kids’ needs all the while putting food on the table and juggling child care at the same time…that’s all a huge adjustment for me. No one else has ever done for me, I’ve always done for others to rarely recieve much in return. My life is pretty stress-free these days, there’s some stress but it’s easily diminished when I realize there’s not a thing I can make better by stressing over it. Maybe the lack of worries and newfound happiness have left me feeling at a loss of emotions…So what needs to happen to make things more consistently better?

I don’t think anything could really make it better. My life is grand…my kids are happy and loved, my hubby loves me and there are no insecurities because for once in my life the relationship is secure and healthily stable, we have a home, we have 2 minivans that are payed off, we’ve minimized any other debt, job security exists to a high degree in a rather scary economy when it’s under contract with the Navy…who could ask for much more? I think I need a break once in a while, like an afternoon to do absolutely nothing or something by myself without the fear of my kids needing me because he just won’t due in certain instances. Without the fear of leaving for 4 hours and having to come back to a mess to clean up since I seem to be the only one that can remember where things belong once they’ve been used or moved out of their home. Without wondering if he’s spaced out in his game, a movie, or the history channel while the girls are running amock around the neighborhood and the baby is crying during a meltdown because he misses his mommy. Maybe then, he’ll truly realize that my days are full of more work than can be imagined…more work than I ever imagined. It’s not baking cakes and cookies, vacuuming in high heels, dusting with a feather duster, welcoming home wonderfully happy and perfect children from school and an overly-appreciative husband from work…like it’s portrayed in old-time sitcoms. But then, I’d be at a loss once again without the chaos that surrounds my ”normal” days..the uncertainty of when certain things will actually get done, as opposed to when I’d like them to be done. I know I would. I love my life, my emotions just haven’t adjusted quite yet…they haven’t learned to be happy and at ease in their surroundings. 

PS. let me point out that it took me more than an hour and a half to type this post…along with making breakfast for one girl while cleaning up breakfast from a hubby who’s long gone to school himself, taking the trash to the curb since that before mentioned hubby of course forgot, an 11 min mile jog/walk on the treadmill regardless of the annoying mystery pain in my back & stabbing in my stomach, getting one girl ready and off for school despite the fact that she’s tired and doesn’t want to, changing an overnite diaper on a very unhappy and vocal little man & various other needful fill-ins that only a super-multitasking-momma could do. ahhhh…the life of a stay-at-home momma and wife, I’m lovin’ it.

I also made my mom a photobook of the kiddos with mommy-quotes for mom’s day…hopefully she’ll love it. I find myself, the older I get and the more life experiences I have, appreciating my mom more and more. I notice things that I didn’t notice when I was younger, and look at life through her eyes instead of just my own. I remember always thinking how unfair it was that I was stuck in a house with my grandmother, who would do the most bizarre and hateful things to my brother and I at times, and just wonder why my mom just lived next door. My grandmother adopted me when I was born with gastroschisis so that I could receive the extra care I needed at the Army hospital on military insurance. Thank God for that…my mom sacrificed alot to give me life. She worked crazy hours and my bro and I spent alot of time elsewhere instead of with her. I used to resent that, resent the families that had their mom around and involved in every school activity and friends with all the other moms. Now I don’t wish so much that she’d been around for my own benefit, but I wish she had the opportunity to stay home with us like I have been given the opportunity to stay home with my kids. I appreciate it so very much, it’s the greatest blessing in the world!

Yesterday, as I do on occasion, I was browsing through blogs. Of course most people want to read about others who are experiencing similar life challenges, so I normally seek out mothers of children with “terminal conditions”. Let’s just say I was highly pissed off at what I found…not only was there a blog containing such horrible comments that shouldn’t be made to your worse enemy…let alone a total stranger, but then there was an entire website set out to attack this poor mother on a whole other level. The mother’s name is Myah Walker, perhaps you’ve heard of her…who am I kidding, no one reads this blog!! haha  Anyways, her daughter is 10 weeks old and has anencephaly. My interest was sparked because my son’s condition of hydranencephaly is half of her daughter’s condition…they’re practically one in the same. To read that people attacked her decision to have and keep her daughter, set something off inside of me that is so undescribable…you would think I, myself, had been personally attacked.

My first instinct was that I was going to click on every negative, hateful, ignorant comment I found and verbally, online of course, tear them a new asshole. I was going to do it. Then I realized that these people are just that, negative, hateful & ignorant assholes…instead, I wondered what that poor mother was feeling. I searched for her instead, much to no avail. I did find a Facebook group that talked about her and the hateful comments…

In turn, I started thinking about the misinformed people I myself had encountered and the numerous billions I never would encounter. What if they were faced with the same decisions, or weren’t given the option but were just in the same position as myself and Myah? What if they gave birth to an angel on borrowed time on Earth who was missing their brain, or large pieces of…would they not have the knowledge they need to go on and give that child the life they were meant to have? It seems like a huge misconception that without a brain means without consciousness, without life. I witness the exact opposite daily…my little miracle is missing his brain, or his body is missing it but I don’t feel that he is. He’s living, breathing, loving, laughing, playing, crying…feeling just as any “typical” baby.

That said, instead of lashing out at the people filled with misinformation or just ignorance…I directed my frustrations at starting a new blog to reach out to others on the journey I’ve been on. Whether it be with hydranencephaly, or another similar condition, or even a not-so-similar condition. I’m always told I was born to write, I’m hoping to help by doing so. I’ve already reached a couple of people, amazingly…but hopefully I’ll find more! And in the meantime maybe I’ll find some of that ignorance and personally deal with it head-on.

share my blog: hydranjourney.blogspot.com

Automatically, once I found out that my son Bray had a “terminal” condition, I was given this title of being strong and courageous and I don’t understand why. Let me quickly state that I always put “terminal” in quotations, because hydranencephaly by definition is a “terminal” condition. But, in all actuality, isn’t life in itself a “terminal” condition? Is any one being on this planet guaranteed another day? …NO! So, who is anyone to tell me that my son will die  sooner than that person themselves…no one can make that diagnosis, I don’t care what degree you’ve obtained or from where you received it. 

Anyways, back to the title I’ve been given…this “strong and courageous” thing. I try to be the best person I can be, the best mommy, friend, wife, daughter, sister…etc. I’m not always, or maybe rarely am I the best of some of those things like friend or daughter or especially sister, I make very bad decisions…if everyone else says they don’t, they’re wrong. For instance, when it comes to my son, the seemingly best choice in the beginning may have been the best considering the end result…but something, fate perhaps, prevented that from being possible. Fate, or God’s plan if you will, brought Brayden into my life despite everything against him, everything at first including the people now closest to him. There was some reason that things didn’t go as planned in the beginning, and some reason why when it was possible I couldn’t bring myself to make it so, I just could not do it and I’m thankful I couldn’t. Before all of that, with my daughters in their earliest years, I chose other things over them to avoid one thing I could have easily been rid of. I, fortunately, realized earlier than some mothers how stupid that was and it changed very early for the better, I got my priorities straight with the help of a bad boss. And during some of the worst times of my life, I made more bad decisions on top of bad decisions that were all wrapped up in to those instances…just about every bad decision you can make in life, I think I may have made at one time. Now recently, it seems, it’s not been a matter of my decisions being so much bad, it’s that they’re interpreted all wrong, and usually it’s because I think I’m doing it for someone else instead of myself. Why is that and how does that happen?

SO, this “strong and courageous” title seems to make people think I’m suddenly invincible, that I should just be able to say the right things, do the right things, and endure the impossible under any circumstances…because in their eyes, I guess, I do all that every day. Truth be told, that is so much further from the truth than things seem.

I am, at times, on the verge of feeling such anxiety that I cannot take it. Let me immediately clarify and say that I don’t say “I can’t take it” as if I think I can’t go on another day, just that it gets hard to keep it all together. I cry ALOT. I take my frustrations out on others ALOT. Then the fact of me obviously not keeping it together gives me more anxiety on top of the anxiety I already have…and well, you see how this just keeps building. If I stop to think about things, it’s quite overwhelming…so let’s just say that I don’t often, but it most likely contributes to my lack of sleep on a subconscious level.

Let me ramble on to say that I have 3 kids, 2 of whom are not my husbands and are the product of a relationship that I felt trapped in and made very bad decisions to try and get out of…yet at the same time was so scared of getting out of, I made bad decisions to stay in it too. Looking back, the decisions that people from the outside would say were the bad decisions I was making…actually were the best decisions I made at the time.  The ones that I was hoping would send my world crashing down around me, the ones that eventually did just that…those were those best decisions I speak of. The things I was doing by staying where I was, surrounded by the people I was, made me a person I was not. Everything I was doing seems now like an excuse to get back to being me, but I didn’t know any other way how at the time. Turns out I had to take a huge chance (or many in the end), piss most people off in the process (one way or another) and put myself through hell while that world crumbled…just to recover from the pieces and bring me to the happiness I have now.  I thought that my life before would be over if it ended, but I wasn’t even living for myself…so really I don’t think that mattered much.

Now that I feel like I am truly happy and it only took me 29 years to get here, I worry that my seemingly happy world, isn’t what it seems to be. I  have fears and my fears often outweigh this courage I seemingly have.  My biggest fear is something terrible happening to one of my kids, every parent fears that but having a child with a “terminal condition”, makes that fear available to be thrown in my face almost every single day. Just imagine for one moment that every time your “typical” child is innocently crying out of shear sadness, that someone is standing there telling you in your ear that they’re dying, that it’s not just a cry there’s something seriously deathly wrong, that you can’t expect them to have a high-quality life because they’re prognosis say it’s impossible so you shouldn’t care or even try, that you need to worry that it’s something more~and if they’re not crying it’s a sign of all the same: that same person in your ear telling you they’re dying, they’re quiet because there’s something more wrong, that they’re sad and your torturing them by sustaining their life, that you should just give up like they want to…and if you don’t fear all that, then you’re in utter denial of the truth, which is the place that I find myself being told I’m in.  That’s what I live with. I fear that the time I didn’t spend with my girls before is wasted, and that every sassy remark I get is them angry with me for it. That they KNOW that I chose other things over them in the first years at times and are going to make me pay for it for the rest of time. I fear that a great decision I made for them, and for myself, will be looked at in the end as the worst decision I ever could’ve made…by not being with their dad, and not wanting to be ever again. I fear that the idea I have of me being happy, makes it certain that my kids are happy is wrong. I fear that the fact that some people can make up such outrageous, yet believable, stories about people will follow me wherever I go and send that happy world I’m living in straight in the shitter. I’ve been there before, so why not go back I suppose? I don’t want to go back, I want to live looking ahead at what’s to come…whether it be happy or sad, I want it to be positive. There can be positivity in sadness, it’s just how you deal and what you make out of it…or so I read.

So, in all actuality…those fears are so silly and can just take over your life and make it a miserable existence. SO, maybe it is better to just keep them to yourself. They’re fleeting and can easily be wisked away with some reasonable thinking. Thinking that reminds me how I should just be grateful for each and every happy day I have, and if it’s not a happy day…I need to work harder to make the next just that. By keeping your fears to yourself, and sharing your courage with others…it brings to surface all the reasons you should be happy with what you have, shows how very blessed you are with all the small things.

thank you Robert Louis Stevenson for leading me into a long rambling and an explanantion into a random quote. I feel better, the end.

There are these pains in my stomach, that kill me…double me over and make me wish I could just cut that portion of my stomach out since the stabbing is always in the same place, maybe someone has a voodoo doll of me?! Almost 10 months ago, I had a c-section and they sliced open my bladder. According to that dr, it was my own fault for not telling them before the emergency csection that at birth I, myself, had gastroschisis…silly me for being more worried about my baby that wasn’t supposed to survive, than the drs making a stupid mistake because my bladder got in the way!? That dr. was a cocky, bobbly-headed jerk…  Anyways, not sure if the pain is associated to the bladder issue…or to the gastroschisis I was fortunate enough to survive through at birth. Nor do I know if it’s associated with the grueling back pain I have most days. The rare mornings that I wake up and have actually slept more than a 2 hour interval, it’s the worst…I can barely crawl my bubble-butt outta bed. If I wake up a million times a night, as I normally do, then the back pain isn’t so bad… On top of that, I can’t sleep when I’m supposed to yet can’t seem to stay awake when I’m supposed to either. Not sure that that’s related, but I’m apparently not the only one who isn’t sure.

After 2 hours at the Navy Clinic with a “bored” 4 year old and a less than entertained by anything 10month old, after having blood drawn and peeing into a cup only to have to pour that into this skinny little vial, then receiving a lower back xray….nothing shows abnormal with the urine that I so expertly got into that skinny little vial, nor with the xray. Now I have to wait for an appointment for a CTscan of my abdomen. And I’m not sure what happened with my bloodwork, it was taken to never be mentioned again. I’m sure that if something was wrong, then someone would tell me!? or so I hope?!

Until some sort of diagnosis is made…so that a treatment can start of some sort….I’m home, with a prescription for Loratabs. At least I can function without the misery of the pain~but it surely won’t help my sleep issues!

Recently I’ve become a Twitter-bug…it’s quite interesting, you quickly see what’s on everyone’s mind and go on your merry little way. No annoying quizzes or “gift requests” to steer you away from your day…I’m thinking it’s my new addiction~tata Myspace and Facebook. Those people better get “twitter-pated” or we’re losing touch…haha!

In the meantime, let me vent. Is it so absolutely wrong for me to WANT to spend time with my husband? Should I have to fight in order to just chill and talk and hang out like normal people…I’ve come to the conclusion that I will now just live the days he’s here, as if he’s not even here. Why change my day just because I think he should be a part of it, if he doesn’t think he should be…I’m no longer going to fight about it. It’s gotten quite old. And all that’s doing is making me think he married me so that he would no longer have to clean up after himself, never have to shop for himself, never have to do his own laundry or iron….and he could have the satisfaction of saying “my wife and kids” because he doesn’t really act too excited for us to be anything more than here.  I’m probably just quite irritated, I’m sure that’s not the case…so rather than be irritated, I’ll just be. And if he wants to partake in our day-t0-day, then he shall. But really, just because he can’t talk about half of the shit he learns at school and is doing all day long, doesn’t mean that we’re just living totally separate lives.

That said, I’m scaring myself…I cook, clean, do laundry, vacuum, IRON *that’s a total shocker*, help with homework, play games, run errands, discipline unruly little girls *on the rare occasion they’re being unruly*, stretch and work out my ‘lil miracle man, sing and dance around my house like a crazy person with those little girls and miracle man, try to breathe deep, and keep in touch with everyone and keep everyone up to date….I’m somewhere that I never dreamed I’d be, not physically but mentally. And regardless of lifes little frustrations, I’m so very thankful for it all.  and here’s why :O) because ultimately, they’re happy…so I’m happy!

My Angels at Easter

Now to shake the thoughts that I could possibly be some crazy person, and continue another adventure in mommy-hood!

Note to self: vacation to somewhere, ANYWHERE is a must during Spring Break. I don’t care how much I want to “embrace” this time with all of my kids home…9 days with all 3 of them after a cold winter of indoor-time is NOT a time of embrace. It’s a time of questioning how you are going to get through momma-hood each and every day, through the whining, the crying, the emotional break-downs that girls are so good at, the sleepless nights of the baby that is in total disarray having his days turned upside down with non-stop squeals and fighting all mixed up with a ton of giggles, the “I want to helps” and the “mommy, so and so is doing ______ (something they shouldn’t do)” and the husband who goes through life as if nothing ever changes in his little world so everything is just as peachy as can be! Thank you for the Oprah episode about this very moment in momma-hood, where you are trying so hard to be the “super-momma” everyone compliments you for being…when every second you’re trying to not lose your mind!!! It’s refreshing to know, I’m not crazy…lol