...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, June 21, 2011

Growing Up

Today my little girl hit a major developmental milestone, but she forbade me telling anyone. And I promised that I would not. So I can't. So don't ask. Because I cannot tell you. Period.

My cell rang in the late morning. She'd snuck the phone into her bedroom, away from the nurse and the sitter. Oh, my heart was pounding. I'm sure the ring wasn't any different than it's ever been, but even before I saw where the call originated, even before the first tentative "Mom?" I was bracing myself for the words that I knew would come. And they did. I swear I had at least a few heart palpitations. I pulled over to the curb and directed her in the step-by-step of what to do. She responded by snapping my head off. I said I'd be home within the hour and made it there in 45 minutes. I wanted to make sure she was not having any discomfort, but even though we were sequestered in the bathroom with the water running in the sink, every privately and discreetly whispered inquiry was met with shortening the stub of my neck where my head used to sit. Dang! I can't wait for next month!

In the evening she timidly asked "Mom. Do I have to wear it to bed?" All timidity was instantly gone when I replied "Yes, sweetheart." You'd have thought I'd strangled her favorite pet and served it to it for dinner with a demi-glaze of apricot sauce! Clearly, it is entirely my fault that she is, in her own desperately quiet words, "Suddenly...I'm no longer normal."

I'd hoped this event would take place outside of school hours. Wish granted. It causes me great pain that she is so very adamantly refusing to discuss any little detail. She gets infuriated when ever I try to give her direction or tips. So, I made a list, sent her brother outside with a Popsicle and tackled it all at once in one fell swoop. There are things she needs to know, like, yes, you have to wear it to bed. And, you need to wrap it up before you put it in the garbage. Stuff like how to tell when it's on it's way, what to look for, how to alleviate the discomfort. The angrier she got, the calmer I got. I finally said that I wasn't sure why she was so angry with me, that I just wanted to make she she knew what to do and how to do it. That's when the tears came and she whispered so, so very quietly, "It's just that...suddenly...I'm no longer normal." I wanted to scoop her onto my lap and rock her like a baby. Instead, while I had her attention minus the glares and daggers, I assured her matter-of-factly that it was indeed perfectly normal and that all of her friends would be experiencing the same things very soon if not already.

So, the less said, the better. I'll wait for her to ask what she wants to know. And then I found the pile of laundry and the comforter that looked like a small farm animal had been slaughtered on it...four days later...balled up in a corner of her closet. Thank goodness for ordinary old household hydrogen peroxide!

Monday, June 13, 2011

Scrawny Ronnie

Jack finally weighs exactly 22 pounds! Yeah! I am quite certain that Katee, the nurse extraordinaire, is entirely responsible for this feat! She rocks!

He can also, thanks to Katee, "Rub your tummy, rub your tummy!"
He can't quite "Pat your head! Pat your head!"
But he can "Now let's find your nose! Now lets find your nose!"
All of which is amazingly adorable! Especially if you hum along to the old classic nursery rhyme Where is Thumbo, as it's intended!

The Dearly Beloved and I were worried to be pregnant again at our late ages, and you already know how distressing a Ds diagnosis is, but I swear on all that is sacred, I thank My God in Heaven every single day for this child.

Jim Bob Duggar once said that God gives us exactly what we want, even when we didn't know to ask for it.  I believe he was exactly right!

Since my Little Butter Ball has finally gained adequate weight, he has graduated out of the infant seat and into the big boy seat I bought way back in May before he started losing weight! Katee and I installed the seat to the accompaniment of much heckling from the Dear Daddy. Of course it's easy for him to heckle and harangue ~ he's never been the one to assemble the carseat/stroller combos, swings, bouncers or any of the other stuff that comes along with babies. He has built each baby's crib, if you count correcting the botched job the kids and I did on Jack's loaner crib. And he has faithfully been the one to lower their mattresses at each juncture of their development. I suppose the heckling did lighten the mood when Katee and I were looking to each other to know what to do with poorly illustrated diagrams. It's not as if we're both college educated ~ oh, wait. We are!

Monday, June 6, 2011

I Got Canned

So, after my fun and friendly office mate and I spent a good deal of time hashing out what we'd each been told in orientation and compared it to the reality of the demands being made of us, she summed up the conversation by fulfilling a promise she'd made to me back in early February, to tell me first if she was leaving. "I'm putting in applications every where. I have three interviews set up. I can't do this anymore. They keep demanding more and more for the same crappy pay. They never say 'thank you,' or 'good job,' or give any sort of reinforcement for our efforts. They just keep piling more and more on our work loads, which would be fine if they were paying us for it." Dang. I knew it would happen eventually, but she was the one bright spot in all the office hours this job demands.

On Tuesday, after the Memorial Day Holiday, I went to my office manager to air my concerns. The biggest concern I had was about being on-call. Yes, they did say I'd be on-call every other weekend. They never mentioned that I would not be paid for it. I was supposed to alternate with my office mate every other weekend. Our Director of Clinical Services, or DOC, whom I'd long ago taken to thinking of as a rabid squirrel with a drinking problem was supposed to be on call Monday through Thursday from 6 pm to 8 am. The reality of it was that my office mate and I were getting calls all night, every night. Within the first month of starting at that company, the DOCS wasn't taking call at all. Ever. Not weekdays. Not weekends. The next big gripe was being sent out to homes for nurses who only work 11pm-7am to do their evaluations and competencies, only to have the nurse refuse because "Why isn't the DOCS doing this? That's her job, not yours. You aren't even my supervisor, so how can you do my evaluation?" My standard answer became that the DOCS brought this to me today/yesterday and said it had to be completed no later than today or you will be out of compliance and will not be allowed to work. Which led to my next gripe. The DOCS has the LVN's requirements months in advance of no later than today/tomorrow, and she demands that our schedules for the following week be turned in the previous week, yet time and again, she'd fly into our little office in a tizzy and demand that we both rearrange appointments we'd made with families weeks in advance because "If you don't get this done by tomorrow, that nurse will not be allowed to work!" She completely put the entire responsibility for our LVN's livelihoods on us, instead of on her own incompetence where it belonged. We knew it was wrong. The LVNs knew it was wrong. The DOCS knew this would send us on a mad scramble to change dates and times with all of our families, often pushing our visits into the dinner and bedtime hours, and us scrounging up childcare for the middle of the night to go see a nurse who didn't start her shift until 11pm. The families didn't like it, the LVNs hated it, and as the RN, we got the brunt of all their frustrations. Funny how the office manager knew nothing of this. That was Tuesday afternoon. He left on vacation late Wednesday. I was called into the DOCS' office Thursday morning with the "This just isn't working out. You're not happy here and we both know you aren't. It's just not a good fit" speech. She slid my final check across the desk and I rose to leave. "Thank you!" she said cheerfully. I said, "Well, I wish I could say that it's been a pleasure, but it hasn't and we both know that it hasn't." And I packed up my pencil cup, bottom drawer snacks stash and my desk-top fan and left.

All the way home I tried very hard to be upset about this. It didn't work. I wasn't upset. I finally called my office mate, who was just leaving a patient's home, and told her that I'd just been fired. "You are joking, right?" I said no, I wasn't joking. She asked if I'd been given a reason, in light of the obvious lack of a valid reason, and I repeated what the rabid squirrel had said. She was the one to point out how very typical it was for the rabid squirrel to wait until I'd turned in all three of my recerts before she fired me. We bantered for a while about just how much this company really does suck and she finally said more than asked, "You really aren't joking, are you?" So we hung up with promises to keep in touch and her parting words were, "Well, congratulations! I'll see you next week for Willie's recert!"

I was home by ten am. I took a wonderful nap and then raced out the door for a 12:15 interview. I was quite pleased to call Katee, Willie's LVN, to tell her I'd landed the job. When I casually mentioned that I'd gotten canned, she was immediately worried about losing Willie. Until I'd gotten hired at this interview, I was worried about Willie losing her. We love her. We don't want to lose her. I'm not entirely sure what the pay is, but it's local, so no more hour long commutes to the office. That's good for at least $600.00 in gas every four weeks. And it's all intermittent visits, no supervision, no case management, no nurses getting ticked at me for correcting their notes, no middle of the night phone calls, no massive amounts of Q/A, no putting up with the continual PMS of the recruiters, and best of all - no rabid squirrel. It's win-win. And I waited a full 34 hours before I told The Dearly Beloved. It went something like, "Oh yeah! I forgot to tell you that I got fired yesterday! But not to worry, I start at a new job Monday!"

"...I still hate my job.
My bosses are *icks.
I don't get paid nearly enough
to put up with all of their *hit..."
~Theory of a Deadman
I Hate my Life,
Scars and Souvenirs Album

Sunday, June 5, 2011

My Little Girl

On June 7th, the sweet little bundle of pink I cuddled in my arms just yesterday will be promoted to Middle School. I've been fully aware and more than cognizant that she'd be leaving sixth grade and elementary school this year for seventh grade and middle school in the fall. I've been so consumed lamenting the poor quality of the only middle school in our district, the only one in our side of the whole danged town, that I was kinda gobsmacked when her teacher sent home a letter to parents asking that their graduating sons wear a suit and tie and that their graduating daughters wear a bright colorful dress with low heeled pumps for the grand occasion. And that's when it hit me like a ton of bricks...her very first promotion, commencement or graduation...depending on how to want to word it, was upon us. Oh. My. Goodness.

And I've vacillated between despair and outright denial ever since. We went shopping for her graduation dress this past weekend, just me and her. Every single dress I loved on her, she hated. Hated. Including the two tailored florals that gave me a glimpse of the shape her body will eventually take. I'm glad she hated those. Well, one of them anyway. The one I really loved was suitably little girl enough to have been quite tastefully worn to a birthday party or to a formal occasion. And it was on sale. But she hated it. After I dismissed every single dress in the juniors department because they lacked any sort of shoulder beyond a spaghetti strap and quite often not even those, and her staunch refusal to wear anything from the children's department, a wonderful sales lady from Formal Wear trekked back and forth between our dressing room in juniors, bringing every bright colorful dress she could locate - from the children's department. She is growing up, and after The Girlie found something to hate about every single dress, she finally consented to a sweet little pink number if it could be found in any other color except pink. It couldn't. Not in her size. Just when the sales lady and I were too sadly beaten down to do more than whimper, she brought in a gem. "I know it's not bright and colorful, but..." The Girlie's eyes lit up. She tried it on. She loved it. They had her size. It was on sale. We were sold. It's white linen with flowers embroidered in fine black thread all over the skirt, ruffle and bodice. There's a wide black and white polk-a-dot sash. It's dignified, but still a bit of little girl.

Next up were shoes. The Girlie knows how to shop. She went right for the clearance rack, found a pair she loved and we sent the sales lady off in search. She brought back another pair, too, "Because they are also on clearance." The Girlie changed her mind and wanted the new selection. The shoes she originally picked out were $17.50. After finding three left shoes in her size of the new selection and waiting patiently for nearly an hour to locate one right shoe, I nearly coughed up a kidney when the sales lady says "Your total comes to $60.45." I thought they were on clearance, I say. "Oh they are! They're Anne Klein. They were originally $155.00, so you have a $170.00 worth of shoe after tax." She was so jubilant about it. I was not. They were simple black flats with a tiny heel and a decorative perforation in the black vinyl. They aren't even leather. But after she had searched for almost an hour to find the matching shoe, I paid out my next weeks' lunch money and we left with the shoes. I did have to put my foot down to the $48.00-on-sale necklace at the same store. It was composed of three black chains with black beads and huge ugly silver Gothic crosses. She was not pleased with me. "Mom. I thought you were going to let me pick my stuff out." So I replied that she'd hated everything I tried to put on her and that she had picked out her own dress, as well as the shoes that were over sixty bucks, and that - oh yeah - I just got fired on Thursday afternoon, so being $120.00 into this little excursion so far, I wasn't about to buy a necklace that cost nearly as much as the dress and shoes! "Fine" she mutters. The pensive pre-teen years are treacherous territory. This conversation took place while we waited for well over 15 minutes to tell a store manager about the excellent service we'd gotten from the gals in Ladies Formal Wear and shoes. She offered me a 10% discount for next time. I declined politely, saying we were not often in the mall. The truth is, their nylons are $22.50. For one pair. One.

Next up, since we were in the mall, we hit Claire's for a headband and a necklace. She chose a skinny black band with a frilly black bow on the side. Back to my little girl. I picked out a funky little necklace made of three black chains with black beads and pretty, feminine crosses and while she didn't immediately dismiss it, she didn't gush over it either. She asked "Can we hang on to that and keep it in mind?" What I said was Yes, of course honey. What I was thinking was more like You ungrateful little snot! If you'd seen it first you'd be trying to talk me into buying this for you! So I carried it around the store and when we got to the register with her headband she turned to me and asked "Can we please get the necklace too, Mom?" We purchased both for a little over seventeen bucks, but we're buying the danged nylons at Wal-mart. I'm not paying $22.50 for a pair of nylons, even if they will be her first ones.

As for getting fired, it was more like "This just isn't working out. You're not happy here and we both know you aren't. It's just not a good fit. Thank you though!" And I got a new job the very next day! So there!

Saturday, June 4, 2011

Baby, Baby

Our nurse Agnes stayed with Jack last Tuesday, so Miss Katee could have a day off. She called me to ask me in her thick German accent (love her!) "Does Veal-yam say the vord beh-bee? Because I was singing to him and every time I said the vords beh-bee, beh-bee Veal-yam, or sweet beh-bee, he said back to me 'Baa-bee!' It vas very clear. He must have said it at least ten times!" I adore Agnes. She is short and white haired and older, and simply everything I'd picture a German Grandma to be. She even smells like lavender. Given that my ethnic descent is very strongly German, I have decided to keep her for my own. She is wise and nurturing, strong and tender, educated and motherly and skillful. One thing she is not is given to flights of fancy. She would not have said Veal-yam said Baa-bee unless he actually said it repeatedly. So you know, I pestered Veal-yam all evening to say Baa-bee. Played with dolls, showed him pictures, patted him while I said the word. Late in the evening I was getting him down for bed, snuggling with him. I said "Goodnight, sweet baby," and he said all whispery-like baa-bee, closed his eyes and went to sleep. Baa-bee. Oh my!

He's cruising around furniture and transferring from one piece to another on a daily basis now. I know it's no longer big news, but it still fills my heart with pride and happiness every time I see him do it!

Friday night, June 3rd he looked right at his Daddy, reached up to yank a handful of mustache out and said the word we've been waiting for "Dada!"

Tonight we celebrated our 25 year anniversary. Twenty-five years! And yes, we count every year we've been together. Our anniversary is actually June 5th, but we had a sitter for tonight! The Olders stayed home to terrorize a sitter with their bickering, and Baby Veal-yam accompanied us to a restaurant where we'd had our first date. The Backwoods Inn first opened in 1962 and I've been a patron there since I was four years old. I have tons of fond memories of the place and even get nostalgic when I'm just driving past it! The Beloved and I saw the first booth we ever sat in there, but it was already occupied. Not to worry though, we were seated in a booth we have occupied before on other occasions. We started with Baby Veal-yam propped between the table and the booth on his side, but switched to propping him in the middle between us, "So we can share him," according to The Dearest. The ambiance is a mix of Victorian elegance and antique Western, and it's appropriately dark and intimate enough that you can go casual, but also not feel out of place in your Sunday finest. We've done both. Tonight we were casual. Our meals started with clam chowder and garlic bread, just the right amount of crispy on the outside, and soft on the inside, perfect for dipping into steaming bowls of creamy clam chowder. Dinner for Him was New York Steak and Lobster, for Her, prime rib and lobster. We both enjoyed the twice baked stuffed potatoes, and I even spied him not only trying the green beans, but going back for another forkful. Ordinarily, green vegetables do not cross his lips, with the rare exception of broccoli. Then again, broccoli is not really green when it's smothered in cheese sauce, now is it? The meal was perfect, the service impeccable, and these two patrons very happy. Veal-yam behaved wonderfully and commanded many comments from leaving patrons, everything from "He's so cute!" to "What a good baby! We didn't even know he was here!" The people on either side of us certainly knew he was there when he let out a jubilant and boisterous tirade or two launched as his stuffed orange dinosaur! We switched the dinosaur out for the Woody doll and Veal-yam spent the rest of the evening chewing on alternating arms and legs of the beloved Woody. The foggy moonlit drive home through the canyon was a nice touch too! Who would have thought there would be fog in June, but there it was. And baby Veal-yam? He seems to adore darkness. He punctuated the ride home with intermittent bursts of happy giggling. We don't know what he was laughing at, but he was having a grand time. So, Happy 25 Years to us! I'm looking forward to the next 25!