...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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Tuesday, August 24, 2010

Frustration & Advances

Since I have actually gotten to work these last two days, I was doing my usual of leaving the cell in the kitchen where I wouldn't hear it and keeping the home phone in my bedroom in case either of The Olders' schools needed to reach me. On one hand, The Middle Littles' teacher did call to tell me that he's doing well so far this year and that she's seen some remarkable improvement in his behavior. On the other hand, she was mainly calling to address a concern I'd had, written a note two weeks ago, and The Pod had finally just delivered to her today. So, that was a good call.

Next I fed The Butter Bean and got us both down for some brief but much needed sleep, setting the alarm for 10:15. Unfortunately, when Anna arrived to make up an hour of EI, I had to turn her away because the pounding in my head had reached down to my stomach. Then back to bed and setting the alarm for 12:15 for PT. That went well, but my head was still pounding and my stomach was still a little flippy. Jean was pleased over and over again with Jack's progress and said so repeatedly! Plus I love the way she talks to Jack, cuddles him, and tells him that his head is big, huge, even! She sings to him between "sets" and moves his limbs to the rhythm of the song. And Jack likes Jean!

Next up was a meeting with the ART team, at one o'clock. Only there was a message from Miss H that was very garbled, and a following message that since she hadn't heard from me, she was just going to arrive at her usual time of 2:30-6:30 for the meeting. Not good. I'd arranged our whole day around the one o'clock time and I let her know that when she arrived, and that she still had to be finished at 5:00 today because we were leaving shortly after. "Well, the team meeting is just to go over the books so that part shouldn't take long at all." Yeah, right.

Miss H from ART arrived at 2:30, and the manager, Miss F, who was also supposed to arrive at 2:30, didn't. Eventually I asked Miss H if Miss F was coming, that Jack had 2 hours of therapies starting in 30 minutes and that I would participate in his therapies. The manager finally arrived 15 minutes late, for what should have been a 30 minute meeting. When she arrived at 2:45, took five minutes to settle in and wanted to start right off with The Girlie, I asked instead, "Why exactly was the meeting time changed?" To which I was met with stoney silence. That simple question set the whole stage. Then Miss H said that since I hadn't answered the phone or returned the garbled and unintelligible phone call, even though she was aware that I don't answer the phone when I'm sleeping, she wasn't sure I would be home.

That got us off to a bad start. I essentially said that if I'd scheduled a meeting, I would be here. I've never not been here for our appointments. So let's not cancel or change times based on my not answering the phone, especially since you know I am a day sleeper and do not answer the phone. I retrieve messages, yes, I do not answer the phone. If I suddenly start flaking off and not being home for meetings we can revisit this rule, but for now, let's not change times, especially given that I have never missed a meeting. They were a little pissy at my assertiveness, and tried to make it my fault that they were uncertain. I'm not sure why this is. Since every BS excuse they had was met with a firm and resounding response from me, the meeting got off to a rather bad start. "Well you did ask me to call you and remind you," Miss H offered by way of excuse. Yes I did ask you to call and remind me. Not change times. You are in our home for 16 hours each week, from four different people, Miss F counting as 5. Jack has 5 or 6 hours of therapies each week from 5 or 6 different people, depending on the week. I work nights and sleep days. A reminder call is helpful, but it's just that. A reminder. Not a confirmation of what has already been decided. We simply have too many people coming and going to arbitrarily decide to change times without actually speaking with me. One change influences the whole days' events, and I already told you last week that 1:00 was great because Jack had two back to back therapies that I had to participate with and that they would start at 3:15. So, let's move on and not let this happen again.

So on to the next topic. The Girlie has not had 4 hours of services for each of the last two weeks, this week being #3 that Miss J has not shown up. Miss F said that she was unaware of that fact. Miss J stopped coming without notice and even though all three of The Pod's therapists, including Miss H, had texted and emailed you for each successive Wednesday and Thursday of missed service, there has been no response from you to either myself or them. Was Miss J coming back or was she to be replaced? What followed was another stone wall pause and then some noise about how Miss F's phone had been disabled after an untimely encounter with water, Miss H flatly denied having any knowledge that Miss J had not been showing up, Miss F said that if The Pod's therapists had texted her, she had no phone to receive them on, she denied having gotten any of their multiple emails, and why hadn't I called her directly to tell her? As far as she knew, Miss J had been showing up on time every day. In short, it was my responsibility to keep track of her employees, essentially. She also said that when Miss K left for the summer, I'd said it was fine for Miss J to fill in for her until Miss K came back. I knew it wasn't permanant and that eventually Miss J would be returning to her job at the school, and that she'd already been assigned to another case they same days and time as The Girlie's. Her entire attitude was that she'd dropped the ball and it was somehow my fault. And the usually assertive and aggressive Miss H just sat there all meek and mild with her nose firmly wedged into the crack of Miss F's backside. Great, the case manager is on the defense in her voice tone and attitude, and the kids' advocate, Miss H, was acting like a whipped puppy at the feet of her master. I was getting less and less mild mannered and civil by the moment.

So I said, Yes, I was aware that Miss J was temporary, but it's not my job to manage her schedule of working with your agency and arrange her departure to return to her previous position at the school district. There still should have been some sort of notice given. On the one hand you said that you were unaware that she had not been showing up, but then on the other hand you said that she had gone back to her previous job and that she had been reassigned with your agency to another case at the same days and times she's supposed to be here for The Girlie. That's a little contradictory, don't you think? As far as your phone issues, that's also not my responsibility to manage difficulties in your personal life. I find it hard to believe that you got none of your emails, especially when I saw them after they were sent, and Miss H, I did discuss this with you and you also texted Miss F, whether or not you choose to remember it. I've had quite the history of making phone calls to you that go unanswered. If your staff, while they are here in the home are notifying you of events, I see no need to jump right on the phone and tell you again. You don't return my calls, so I don't make them. I let your staff do that. But back to the matter at hand, Miss J's been reassigned and Miss K isn't coming back to work for you, but the Girlie still needs her hours of service. To that, Miss F didn't even bother to deny that she doesn't return calls or to acknowledge that she had just admitted to dropping the ball, and that she was unaware that Miss K wasn't coming back. I said I'd known about it for over two weeks, but again it wasn't my job to report Miss K's comings and goings and job choices. "Well you said that you didn't want Miss J to replace Miss K, so I didn't find someone for you." That was her new excuse. Yes I did say that, when you and I both thought Miss K was coming back to us. Now that we both know she isn't, they need to be replaced. "Well that's why I didn't find someone else for you." Really, F? Is that why? Did you not notice that Miss K didn't rehire with you or that her replacement now needed replaced? Is that what you're saying, that along with your phone excuses I'm supposed to manage your staff as well? There was so much tit-for-tat trying to shift the blame to me for her poor management and lapse of services to The Girlie that it made my head spin. By this time I was quite annoyed and watching the clock tick down so I said, Well, regardless of when you found out, you know it now. The facts still remain that it's not up to me to monitor the comings and goings of your staff; We're the consumers, the clients, not the service providers; Miss J or Miss K, one of them, still needs to be replaced. It was tense, and even though I was met with some frosty responses when I held firm, I stood my ground. Why it had to be so confrontational still boggles me, but I think it had to do with their first BS excuse and that I deflected it without letting them make it my fault.

And then Miss Beth arrived right on time for Jack. I told her to go ahead with Jack's OT, that we should be done with our meeting in a few minutes, looking to Miss H and Miss F for confirmation. They both nodded their heads at 3:15. So for the next 45 minutes, Miss F and Miss H went over The Olders programs, with them both belaboring every point and with me trying to participate in OT and the meeting at the same time. At about 3:30 the phone rang and I mistook the number on caller ID for one of Jack's doctors and excused myself to answer the phone. Having realized it wasn't his doctor but someone else, I proceeded to quickly take a message for myself. I was standing at the kitchen sink with my back to the table when the caller said, "Ax her to call me." And that set me off. I said, "Excuse me, but did you say 'Ax her to call me, or ask her to call me?' " When I hung up and turned around the atmosphere was arctic. I made an off handed remark about bad grammar and then greeted The Beloved coming into the kitchen, and chose to ignore the fact that Miss F bristled at my ax vs ask question. Her bad grammar is not my concern, but due to what happened next, I just may call her on it the next time she axes me a question.

Side note: Jack is sitting in my lap shouting "I do! I do! I do!" at the top of his lungs! Did someone offer ice cream?

And what happened next was this. It was 4:00. Beth finally said that Jack was starting to get hungry, looked at the clock and said we needed to move on with his next session. I said to Miss H and Miss F that we needed to move on, that his next session was ST and it was to teach me as well as him. Five minutes later I gave Beth Jack's elephant jiggler to start working his mouth, and I prepared Jack's cereal and squash and opened a jar of bananas and heated a bottle. Five minutes after that, when it was clear that Miss H and Miss F were not moving on, Beth stood up and began swaying Jack back and forth in her arms in the middle of our meeting. And five minutes after that, at 4:15, I took Jack from Beth's arms, got busy setting him up in his high chair, and informed Miss H and Miss F that we were finished. Beth wound up sitting on the ottoman in the living room, while I sat in my rocker in the living room, since Miss H had moved on to the The Pod's session and Miss F sat on her butt at the kitchen table doing paperwork, and clearly wasn't going to budge even though we were preparing to feed Jack. So I essentially ignored her and moved on with ST in our living room. Never mind that stepping 2" from the kitchen puts you in our living room, still, it would have been nice to work at the table, where most people usually eat.

ST rocked! I love our new ST, Dr ES, but Beth filling in for her today was absolutely awesome! Beth, as an OT, knows about million times more oral motor stuff than our previous ST, Miss Nervous. Beth brought a Nuk brush for us and after slaking Jack's initial hunger with 3 ounces of formula, Beth showed me how to use it in Jack's mouth and how to use the Nuk to prompt that little pink tongue back into his mouth where it belongs! Next we moved on to butternut squash with a tablespoon of cereal mixed in, alternating with a thinner consistency banana. He did great! I gave him little breaks to have knock back slugs of formula, but he was always happy to go back to the spoon food! With Beth, The Dear Daddy and I cheering every successful spoonful of food, Jack finished the whole 4 ounce jar of squash plus cereal, 2 ounces of bananas and still had room for his beloved bottle! It was a very successful meal! There was much cheering and applauding going on! At the end of the meal Jack had perhaps two 1" smears of food on his outfit. And he did have some on his forehead and in his nostrils, but he'd swallowed the rest! Yeah Jack! You go, baby boy! And yeah Beth! Because she rocks!

At the close of ST at 5:15, Miss F was finally packing up her paperwork to leave. She said in an ominous tone, "I do need to speak to you about some things, but you have stuff going on." And she finally left. The Beloved caught her tone and waited until she was actually out the door to raise his eyebrows waiting for my story. Since Beth was now doing her paperwork, I told him the story, starting with putting a stop to changing meeting times without actually speaking with me, the BS of trying to redistribute responsibility for dropping the ball for The Girlie's hours, and moving on to the eventually civil, then jovial atmosphere right up until my "ax" remark on the telephone. Beth said, "Oh that's what happened! I could have heard a pin drop when you hung up but when I first arrived all three of you were laughing about something, and then all of the sudden it was tense in here!" So we chatted about how the meeting had gone from bad to worse, to okay, to good and winding up at very bad and me frustrated with them dragging their heels for far too long. Beth said, "I hope you didn't mind, but after you already told them several times to move along, that's why I stood up with Jack in my arms and started swaying in the middle of every one." I said I'd noticed that and was glad she had, that I thought the malingering was passive aggressive retribution for my "ax" comment, with agreement all around. I guess the ax hit it's mark.

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