Friday, July 6, 2012

Flashback Friday: The Rollercoaster Dip

From September 2010:

I am beyond the point of being full of anxiety, as much as I try to hide that huge fact... perhaps it's my self-analyzing for psychology class, or the new environment, or the fact that I'm feeling a bit like a single mommy in a HUGE new city... regardless, I'm at a loss and filled with emotions and haven't the foggiest clue what to do about any of it! So, I need advice... or I just need to vent. Regardless, I need this post so here it goes:

My daughters are ages 8 and 5, in 3rd grade and kindergarten, and very outgoing. They easily make friends everywhere that they go... but with that slew of new friends, that brings questions, and ALOT of them! On a 5 minute walk to the school for a PTA Open House, there were questions... all regarding Brayden:

~Why does his head look funny?
~Why can't he walk?
~Why can't he talk?
~He's cute, but why is he yelling?
~Why are his hands in fists?
~Why are his toes curled up?
~Why are his eyes fluttering?
~Why is he wearing glasses?

Why, why, why, why... I actually am so impressed with a kids ability to blatantly ask questions and be open and curious. I wish adults would do the same.

Needless to say, now that it is becoming blatantly obvious to my two girls with a lot of friends, who undoubtedly also have little siblings who are two years old or so, now realize that their little brother is not "typical". They have always known that, I am always completely open about everything to do with hydranencephaly and how Brayden is affected... but it isn't unusual to them, until their friends start talking and asking a million and one questions. And then I get, "when is Brayden going to grow up and not be a baby anymore?"

At the same time, speaking of questions... why do adults feel that it is better to stare, then to simply ask what they are wondering? Ok, I know it's a touchy subject... but is it better to stare or glare, unable to look away because you're trying to understand what you're looking at, really?? Needless to say, this staring business is only amplified by the fact that I have chosen to ignore the "no-stroller policy" at my girls' school... simply because toting around a 30lb 2 year old who has little to no trunk strength or head support is next to impossible for longer than 5 minutes... and that is a shorter time-span if I am asked to sign a piece of paper or do anything else requiring one of my hands. Twice a day is more than I can manage... So, not only do I have the only 2-year old who is obviously NOT running around the hallways getting in to trouble during pick-up/drop-off times like the rest of the little siblings... but I also am the only mommy allowed to bring a stroller in to the building. Not to mention that no school officials have said a word about it... because, again, it's now blatantly obvious that Brayden needs the ride and it's not simply for my own convenience as it is with other parents. 

Anyhow, to those other parents... how on earth do I address this... ALL of this? Do I hang a sign on Brayden's stroller saying: "Yes, I am allowed to bring my ride in the building," or, "I know that I'm a cute little man and I love to smile... but please, if you're curious, just ask my mommy to talk about me. She'd be happy to." Because really, I would LOVE for everyone to just know... and to not just stare. I would love for everyone to just love him as much as those who know him do... because I know everyone would.

Then there is the whole support group thing, which will likely be resolved the second I actually interact a bit more with therapists and early intervention and meet more people within this community. However, the people I have asked have informed me that the support groups they are aware of are for children with "different" special needs... autism, down syndrome, learning disabilities, ADHD... not children that are like dying, like my own son with his terminal condition. What? I was completely unaware that families of children with extra special needs had varying levels, that there was a spectrum of severity that you had to position yourself on to fit in. Interesting concept... one that doesn't exist only here, and amongst parents, but amongst those living with disabilities as well.

So, all of this along with this self-analysis business for my classes has me completely a mess inside... and actually until I read a friend's CaringBridge post today, I was beginning to wonder if a state of denial had completely taken over and I hadn't just been consciously repressing my emotions... I was beginning to think I couldn't cry anymore, that I had cried my self out and was beyond feeling helpless. Almost as if I had tricked myself in to really believing the reality I put up to shield the truth, and not the reality that truly exists... because they're not exactly the same, although I try to (and usually successfully) maintain them that way. 

Funny since my last post, if I remember correctly, was the article about Brayden being perfectly "imperfect" and how I wouldn't change him... welcome to the rollercoaster of emotions, because now I feel completely helpless to the fact that I CAN'T. Not only that, but I find myself so envious of these families who have children with these "lesser" special needs... because at least their child isn't teetering on the edge of the cliff of life, attempting to make the plunge without a moments notice. I get frustrated with the families who are "battling" a war against any range of treatable conditions... because I feel like my "battle" was lost before I had even begun.

Hopeless and helpless is how I'm kind of feeling... I've found myself kind of stuck on the "cannots" when I usually relish in the "cans". I cannot do anything to change this. I cannot do anything to make him alright. He cannot walk. He cannot talk. He cannot even see me all of the time. So, to answer all of those questions kids ask... how? He just can't?!

A sweet little boy around Brayden's age that was bouncing up and down two rows ahead of me at the PTA meeting tonight said, "I love you mommy." and his mommy replied, "I told you to sit down and shut up until this is over." 

Heart Broken... that's me. I nearly lost it right there amongst a gymnasium full of other parents and children.

I will never hear, "I love you mommy." from my little man... I will never have to say sit down, because he has a long way to go before he can even sit up. I know that my 'lil man knows he is loved... but I only want to give him everything like I give my girls. And I want to make him clean his room, and I want to be mad over the mess he makes, and I want to ground him in high school for missing his curfew... I don't want to force him into his stander, I don't want to make him sit "in the middle" instead of looking over to one side, I don't want to force him into a fit over tummy-time, and I HATE pushing him through therapies only to take 20 steps back when we make one step forward. But if I don't, then I have given up on him... and I, more than anything else in the world, do not ever want to give up on him. 

And, without a doubt, I never will... but I would undoubtedly do anything in the world to take a break from this battle, or at least not feel such defeat all of the time.

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