...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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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!

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