NaBloPoMo- Day 13

[katydaqueen]

Storytime edition:

Once upon a time, the internet was this new, unexplored territory. I mean, wow! Anyone could get a site if they wanted one. So, I started with a Geocities site, then worked my way to my own domain name. I have not looked back since.
Part of the early site was when I was really trying to do something meaningful on the web. I wanted to have an impact and be known for something more than just being a stay at home mom and a college student. I had pages on attachment parenting, cloth diapering, breastfeeding, and many others. I joined online forums. In fact I was in an AOL parenting forum while in early labor with Aidan. I made friends, I made enemies, and I made mistakes. It was like adopting a whole new culture.

But that is not what this particular entry is about. This entry is an update to this. Go, read it- I will wait.

Thanks for coming back. Reading it tonight was hard. This piece was written at the start of what is turning out to be a long, arduous journey.

And yet, except for the specific incidents I cite, not one thing has changed. How was I so prescient? I did not know of the injuries, yet I wrote this:

My biggest concern in life is keeping him from doing bodily harm to him or us.

Konal was 3 years old when that was written. Aidan was a wee babe in arms. Somehow, when I was writing this in the middle of the night, I saw myself, 10 years later, writing in the middle of the night.

I still do a modified version of the bedtime ritual. I work hard at letting go of resentment and fear, because those emotions will not help me face tomorrow. He still sleeps in a tangle of bed clothes with sprawled limbs.

and this statement:

After all this, would I give him up? No, I won't, not in a million years. He is my own special someone. I am blessed to have an opportunity to mold this child into an adult, and watch as the traits that get him in trouble now are appreciated later. So here I stand, emptying my mind, letting the love flow in and the frustration flow out. I take a deep breath and go to bed. I am ready to face tomorrow. He will surprise me, frustrate me, and teach me more than I ever imagined.

has not changed one bit. This is what keeps me going. This is why I do what I do.

And yet, I am tired. I am worn thin, and am not sure how to deal with it. I would let others in and have them be a support, but they often don't understand what is going on. Having to continually explain it makes me feel so alone sometimes. Chris is a wonderful support, and I know he is getting it, but he is also concerned, frustrated, and feels powerless when things happen. I know that my friends are unsure what to do to help. I know society has no clue, and would rather write him off as someone who can't be helped. What can our family, friends, neighborhood, community, & society do?

Love us.

Not just me, but Konal as well (Aidan too). Celebrate his humanity and see the little person who has way too many problems to deal with in a short life. Show him that people care for him, and see past the behavior, past the body that does not cooperate, past the inability to deal with all that is boiling around in his head. Make him feel that he has value, and that he has something to contribute. Nurture all that is good, so it eventually subsumes the bad into a whole child. Work with him to show him other ways of coping with life.

Now that I have overwhelmed you, and wandered all over the place with this, I have one more request.

Pray. However you do it, whoever you do it to. Be it good thoughts, good wishes, meditation mantra, or an Our Father.

We are missing something. We are missing something important. Konal grows more medically fragile each year. There are a whole lot of seemingly unrelated health issues that come up as time goes on. We know there is a neurological component and the renal system and gastrointestinal systems are involved. We suspect that his endocrine system is at issue as well. We don't know why, or even how, and we are playing the medical system shuffle (it is everyone else's responsibility.) We just know.

Thanks to the Punjab Patty wedding, I was introduced to a Social Distortion song that brings me to tears. (pop up warning)

The verses that grab me?

You say you're down on your luck
hey baby, its a long, long way up
hold back now, hold back your fears
you say you're really down and out
and you feel like there's no way out now
let go, now let go of your tears some more

How many times have you asked yourself
is this the hand of fate that I've been dealt?
you're so disillusioned this can't be real
and you can't stand now the way you feel

and especially this one:

I triumphed in the face of adversity
and I became the man I never thought I'd be
and now my biggest challenge, a thing called love
I guess I'm not as tough as I thought I was

Konal says I am the strongest mom he knows.
Sometimes I wonder...

Comments

[djtseliot13.livejournal.com]

That is one of my favorite songs. Social Distortion is an amazing band. Odd that we both posted their lyrics on the same day.

I will do what I can, even if it is just the simple things you've asked here.

[katydaqueen.livejournal.com]

Thank you :) Social Distortion was a late discovery for me- I think about 3 years ago. I am always affected by lyrics, and they really have some awesome songs.

[revmamacrystal.livejournal.com]

To be honest, he seemed like a normal kid to me. I don't know if that's a comfort to you- I saw him acting out and thought- "yep, that boys for ya."

As a Mom, it's always the worst when you feel there's nothing to do for them- it feels like failing. As you said, it takes a strong Mom to help kids with medical issues. Bless you for coming to this planet to be one of those. That's the amazing thing about kids- we love them no matter what.

[katydaqueen.livejournal.com]

Thanks, Crystal. He is an awesome kid, and does well out in public. He made me very proud of him at the wedding. He is one of those kids where even his behavioral health techs are surprised when he has to be put in a therapeutic hold.
He is very logical, but when he rages, the logic flees or becomes very skewed.
There is a disconnect in the cause -> effect continuum for him. When he developed the tics (which are controlled with medication) 2 years ago, it really threw me in a tailspin. It was the first time his disability was really visible and he had an even harder time at school until we found the right med to control them.