Tuesday, August 23, 2011


Alright, I was in a funk... it happens. This journey, regardless of how optimistic you try to be, just sucks the happiness out of you sometimes. But that's the joy of hope and optimism:

‎"Hope is a renewable option: 
If you run out of it at the end of the day, you get to start over in the morning."

~♥ Barbara Kingsolver

Sometimes it takes a few mornings, but eventually it comes back strong... now to play catch up with everything I neglected in the meantime. Such as this week's Bee-ography...

My thought process

So often I feel like there are such high expectations placed upon parents and caregivers of children with extra special needs. We are constantly told how strong we are, how inspiring we can be, how another parent "would never survive" the days we endure... but what about the days that we aren't these strong-willed individuals? We're not superheroes... at least not every day. 

While in other cases, we are classified in to some strange breed of parent. We are looked at differently, no longer a fit for invitations to mommy meet-ups and/or play groups, and instead left living a very lonely existence when we are still mothers, fathers, carers, and people who love our children... often more than those who are accepted in to society's idealistic mold. 

And, in part because I neglected gathering a new bee-ography this week and partly since my education in psychology has taught me that self-disclosure and self-examination/evaluation is an ultimate healer (my funk still needs a bit more healing)... you will get my mommy-ography this week:

So amidst the stories of our little bumblebees, I will start including stories of the parents to these little loves. An awareness of our realism, our struggles and obstacles... our raw emotions. Through life and through death of our little bees... before and after.

To start this new blog addition, this is me:

I'm Alicia or Ali, while founder & president of the foundation that has inspired this blog (Brayden Alexander Global Foundation for Hydranencephaly), I'm also:

~a struggling with stay-at-home status mommy, even after 3+ years  
~an unsure and insecure, yet very spoiled & loved (even when probably not deserved) Navy submariner wife
~a trying-to-be full-time college student who cannot decide which path to take, so in the meantime takes random breaks to re-evaluate, but is still oh-so-close to graduating with a bachelors in psychology

who absolutely loves her girlies, even when being whiny and full of "I wants", and her littlest and biggest men.

I was born in Missouri, a miracle myself having been born with a rare and previous to birth undiagnosed condition called gastroschisis. Essentially, my insides were on the outside, which miraculously left me with not much more than an ungodly scar down the entire length of my stomach and no other health issues to speak of. I took years of piano lessons, lessons in baton twirling, and reluctantly wore horribly ruffly dresses in my youngest years.

I grew up, from the age of 8 or so, in the tiniest of tiny towns in Missouri, Laquey (which is not pronounced with a "q" sound but rather as "lake-way") where I was a band "geek", who excelled in music, while attempting to play softball (while horribly) in the field across from the smelly dairy farm, sitting the bench in volleyball more than I played, who found myself bullied for still unknown reasons to the point of developing a huge dislike of my high school years and never fading insecurities, but still had the same boyfriend through most of my high school years who I thought would spend my lifetime with until the inevitable high school ending happened, and eventually escaped to the Lake of the Ozarks where I spent 10 years learning from mistake after mistake. whew!

"If you're not making mistakes, then you're not doing anything. I'm positive that a doer makes mistakes." 

~ John Wooden

I was certainly a "doer." I managed restaurants, worked the longest hours possible, drank far more alcohol than I should have and dabbled with things that most adults will not confess to touching. Then I became a mommy... and those things, though slowly, became the past. A part of my past that brought me to where I am now...

It sounds crazy, but I remember thinking when I became a mommy that it was strange I did not know other mommies of children with special needs. I had friends with typically developing, seemingly perfect, healthy kids. I had been an aide in special education classes in high school and volunteer opportunities. I had always had a huge heart for individuals with obvious disabilities, once scolding some of my best friends for making fun of people with mental retardation (a word I've always hated, but hate far more now) and secretly always felt a premonition that I would be living that life one day. Not as a disabled individual, but that I would be the mommy with the child who had disabilities... sounds crazy, but I always kind of knew.

I have two girls, ages 9 and 6, who are perfect in every way. They're well mannered, polite, loving, smart, and the most beautiful daughters a mommy could ask for on the both the inside and out. They're full of drama, full of life, full of giggles and emotion, and cover my world with glitter.

Now, with my third round on mommy-dom, I am that  mommy... just as I knew I always would be. I juggle frustrations from having to tell my girls, who were likely overly spoiled in the past, no because we just cannot manage everything with everyone, one of those everyones being in a wheelchair with no independence, and their spoken our of frustration desire to live with their biological dad, soon to be step mommy, and baby brother on the way. Though I know it's only out of frustration, where some kids say they're "running away from home", it hurts just the same.

I'm fortunate to have an amazing, supportive husband... even if he doesn't share with me his amazingness and support due to his own, typical to most men and admittedly shared by myself, inability to communicate. My kids, girlies included who are blessed with two, and my step-son Seth are fortunate to have this guy as a daddy. It's true when they say that marriage is hard, but a million times harder with a child who has extreme medical necessities. One of my biggest struggles continues to be finding peace and security, when I've never even been given a reason to not have both, in my days. Another is struggling in a household that includes a spouse while also living my days feeling more like a single parent... thank you US Navy, for reminding me of what qualities an individual must possess to single parent children for an entire lifetime.

While I've learned to accept compliments with more grace, I still do not really like them. Words such as "inspiring" or "strong" or "amazing" are wonderful to hear, I point those out since I hear them often, but not how I feel. I try to be, I want to be, but I'm not always. I have times when I want to give up, to give in and stop fighting all day every day as is required when parenting any child but especially a child with hydranencephaly. I don't always want to be the hero, the one who speaks up and speaks out against such negative individuals that plant themselves in my life or the lives of the ones I love the most. I definitely do not feel amazing, rather very lacking in the amazing category. But I do strive to be these things, feeling rather successful a majority of the time... only because I make the conscious effort to surround myself with people who are the same.

"Desire is the starting point of all achievement;
 not a hope, not a wish, 
but a keen pulsating desire which transcends everything." 

~ Napoleon Hill

I spend my days laughing and crying, sometimes at the same time, but more often because I'm happy than because I'm sad. I'm an emotional wreck more often than I'd like to be, though the highs are far more often than the lows. I'm so situated in on-guard mode, that I'm way with everyone... defensive, sometimes probably intimidating and bitchy. I'm completely indecisive, about everything from what to make for dinner to what to do first for the day to what I want to do with this elusive college degree for the rest of my life. I struggle with not working outside my home, after never really being exposed to anyone who was a stay-at-home mother before now, but I'm adjusting in my own time. I love the people I love because of who they are, not for who I want them to be and expect the same in return... being fortunate to have many loves in my life through friends and family from near and far, some that I've never nor will ever meet but are closer to me than those I've known a lifetime (you know who you are). 

And for just a little more: I wish on stars and believe in happily ever after. I despise judgmentalism, even if it isn't a real word, you get the point. Stereotypes and generalizations irk me, even if done in a joking manner. I am completely stubborn and open-minded at the same time, but believe what I believe and cannot be coerced easily. I take things the wrong way, and over-analyze everything, but generally work the negatives out in my head before they overwhelm me, which ends in my apologizing... a lot. 

That's me... I'm a real person. I yell at my kids sometimes. I get frustrated and am unreasonable other times. Sometimes I roll myself up in my blankets and sleep away a day... rarely, but sometimes... only to escape a heavy load. I'm not a hero, I'm not amazing, and I'm certainly not anyone in a place to be admired or envied. And strong? If being scared to death, every second of every day of that very thing... death... makes me strong, then yes. My crazy days are my normal, while chaos in another's eyes. 

Please look forward to reading other mommy-ographies as contributed in the future. I hope that others will share... not only is it therapeutic for you as parents, but it's also revealing to others who have this envisioned cookie cutter for parents of children who have special needs. 

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