...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Thursday, December 2, 2010

The Basketball Debacle

The Girlie spent the night in our bed, once she was sufficiently drugged with Frosties from Wendy's, ibuprofen and narcotic pain medication, and lots and lots of snuggles and pampering while we all watched a family movie together. I called Mrs V back at about noon today to tell her that yes, The Girlie was to stay home today, and that indeed, her nose was in fact, fractured.
Her attitude was quite more accommodating today, but the things she had to say certainly were not. No, she had not yet had the chance to mention this to Mrs S to find out what she had to say. She did say that there would be in place from now on, for any student, not just The Girlie, a policy that any injury will result in a trip to the health office, she just had to run it by the principal. I asked what the principal had had to say about the situation. She said she hadn't had time to mention any of this to him yet. She'd said several times during yesterday's conversation that she would mention my phone call to Mrs S to see what she had to say. So I repeated to her again today what I'd said yesterday. "I don't want this issue mentioned, like a casual conversation. I want it discussed and I want feedback on what is decided." She was a little put off. She asked if it wasn't adequate that she was telling me over the phone about what had happened so far and about the new policy to be implemented? She seemed genuinely taken aback that I wasn't satisfied. She said that any further discussion would be mute, that since The Girlie's nose was indeed broken, she didn't see the need to continue to argue the facts. So I said, "No, it isn't adequate. You haven't spoken to Mrs S yet and the principal hasn't even been notified of my daughter's injury. The facts are inarguable. You have a policy you want to put in place but have yet to implement. I still have not heard what Mrs S has to say about this situation. What has happened so far, are only these two discussions between you and I, no one else. I want reassurance from Mrs S herself that this will not happen again. So no, your verbal assurance over the phone that I can trust my daughter's safety to your care and custody is entirely inadequate." She assured me that I would receive my feedback and that Mrs S would call me personally by day's end. You can guess that that didn't happen!

We were on the way to Wally world to buy space heaters. That's another ugly story that has wrench written all over it, for another time, but suffice to say that we can't get the danged heater to go on and we don't have the money to replace the panel just now. So when my cell rings, I'm expecting Mrs S, as we'd discussed. Instead, it was Mrs W, the principal, who'd finally in her words, 'been brought up to speed' on this situation. She said she had spoken with Mrs V at length and also with Mrs S personally and was satisfied that she had taken the correct action, that The Girlie declined several offers from Mrs S to be sent to the health office and further declined the offer to have me called, saying she would be fine to go home on the bus. She said that Mrs S had not called me herself as promised because Mrs V was unaware that Mrs W had asked Mrs S to do some tutoring after school, today. Sound like a bunch of crap designed to avoid self incrimination during litigation to you? Yeah, me too. I replied that The Girlie had said none of this to me, that I would ask her specifically about it, that she'd already said the teacher did not try to send her to the office yesterday, but that sometimes with autism, there is not total recall of a conversation until reminders and prompting are given. We hung up agreeing that I would ask The Girlie again, because sometimes she will say, "Oh yeah. That did happen. I forgot. Sorry"

By the time we hung up, we were already in Walmart. And when I asked The Girlie about yesterday, she most certainly did not say, "Oh yeah. That did happen. I forgot. Sorry." The Girlie sees me folding my phone shut and asks, "Was that my teacher?" No, I say, it was Mrs W, the principal. She says that Mrs S asked you repeatedly if you wanted to go to the health office and you said no. And she blew! The Girlie is very mild mannered. Unless she's yelling at The Middle, she seldom raises her voice. She didn't raise her voice now either, but she was adamant. "Mom, that's not true! That conversation never took place. She never asked me if I wanted to go to the health office," complete with eyebrow furrowing that earned her a flinch from the pain and was promptly traded for head tilting. The emphasis on some words is also rare for her, because her medications flatten out her affect to the point that setting her head on fire would not yield any alarm on her part. So I said, Mrs W also says that Mrs S asked you if you didn't want me called to pick you up instead of going home on the bus and that you said you'd be fine on the bus. And that really set her off. She may have even raised her voice by .0009 decibels. She was ticked. Her face got red and she was shaking her head in denial. "Oh no! No! No! No!" quite calmly in spite of the vehemence, "Mom. That never happened. She never asked me if I was okay to take the bus. She's a liar. I don't care if she does get into trouble now because she. is. a. liar." I assured My Girl that I believed her and that I would get to the bottom of it. She doesn't lie. Ever. She can't. I don't think she knows how, despite my best efforts to teach her. But that's a story for a different time. My assurances were met with "She's a liar, Mom. I hope she does get into trouble now!" So I had to say that we didn't really know who was lying, Mrs W or Mrs S, because we hadn't heard what was said for ourselves and the information was second handed, but again, I would get to the bottom of it. I haven't thought about it a great deal since then, because The Middle Little chose that particular moment to have a massive in store melt down about the injustices being suffered upon my only sister. His words, not mine. From an eight year old. But now that I'm typing, a few things come to mind. If the teacher supposedly felt strongly enough about the situation to ask "repeatedly" if a trip to the health office was needed, wouldn't a reasonably prudent person send the child anyway? That's the standard I would be held to in a court of law. Reasonably prudent. And as for the offer of calling her mom to pick her up instead of riding the bus, let me tell you, The Girlie hates riding the bus and would have jumped at the opportunity to avoid it. A hang nail would be a perfectly valid excuse for me to save her from riding the bus. Or a spelling error. The fact that it's Wednesday. They served fish sticks in the cafeteria...you get it, anything to avoid riding the bus. Anything. And the ice pack on her face? Wasn't that reason enough to send her? The final note is that My Girlie never lies and believes that it is a reprehensible thing to accuse someone of if they haven't lied. And yet she was perfectly clear. She. Is. A. Liar! Not remembering a bit of conversation is entirely different than denial of it having taken place. So I guess I will be having another conversation with her principal tomorrow to insist upon a meeting. Very soon. With The Girlie present. Both she and Mrs V had said that they hoped to be able to meet me soon. It just goes to show you, you'd better be careful what you wish for, because you just might get me instead!

1 comment:

Holly W said...

okay girl..time to go kick some ass...
okay, maybe not that extreme...
but this all is making me crazy..and it's not even me!
AAHHHHH