...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, July 8, 2010

One Year Ago

I guess I'd always thought, knew, that we'd have a later in life baby. I just didn't know how special he would be. I didn't know then just how immense my love for him would be. And I didn't know that he would have Down syndrome. But one year ago today, I knew. It was one year ago today that I sat in this very same chair and asked the Beloved Dr S over the phone, "Does the baby have Down syndrome?" He said, "Yes, my dear. He does have Down syndrome. I wish there was better news, but that is what we have."

When we were pregnant with Hannah I thought that she was our third baby. Our later in life baby. And when we lost her, I just couldn't understand how that innate knowledge I'd always carried with me could have been so wrong. So, so very wrong. We had three dogs, fawn, tricolor, and blue. We had three cats who were also by happy circumstance, orange, calico and gray. We had two kids, brunette and brown eyed, and blonde and blue eyed. How could we lose our third child? They were supposed to be a matched set. Kids, cats, dogs. Even our goldfish were orange, tricolor and gray for crying out loud. It was a nutty way to think about it back then and it still is today, but there it is. There's just no accounting for how one feels in the face of such anguish.

One evening after we lost Hannah, The Beloved and I were grieving together and he said something odd that made no sense. "I guess the psychic was wrong." What? He doesn't believe in such stuff. So he explained that a long, long time ago he and his best friend were out carousing and decided to waste some hard earned money on the all night psychic and tarot reader next door to the club they were bufoonerizing in. The psychic looked at his palm and said he would have three kids. "So, I guess she was wrong."

From the first moments I knew I was pregnant, even before the pee-stick did it's thing, I knew Jack would be Downy. I apologize to any of you lovely parents out there who take offense to my calling him this. He is My Duck, My Gosling, My Cygnet, and therefore I am qualified as the mother of this beautiful boy to call him Downy, here in the privacy of my heart, if I want to. But on that day one year ago, I did not feel quite this way.

I won't go into those days of despair. You can read about it here and here if you'd like. No, I'd much rather talk about how awesome it's been since the moment Jack took his first breaths. But hey...that's why I blog! Showing Down syndrome in all of it's rightful glory just may help some scared, frightened parents-to-be decide to continue with their own Down syndrome pregnancy.

I can say with a free and clear heart that Jack is one of the best things that has ever come into my life, our lives. He is a beautiful and sweet baby and full of life and bursting with love to give. He starts the day smiling and cooing and frequently gives me one of his trademark sly grins before settling to sleep in my arms at the end of the day. It's as if he's saying, "I'll see you later, sweet cheeks!" So...go read the blog! I wanted to say something on this momentous day, but unless a lightning bolt of brilliance strikes me, this is all there is.

I guess the psychic was right after all.

From underneath the trees, we watch the sky, confusing stars for satellites. I never dreamed that you'd be mine, but here we are - we're here tonight; singing Amen I, I'm alive. Amen I, I'm alive!...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...And as we lie beneath the stars, we realize how small we are. If they could love like you and me, imagine what the world could be.
- Nickelback, If Everyone Cared
For All The Right Reasons Album

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


Post script: A brilliant flash of light did strike this morning, in the form of an e-mail from Bits the Bestest! I will create a page just for it and link to it when I have it finished. I love you too Bits!

1 comment:

Ria said...

It's so interesting how "3" seems to be your lucky number. Reminds me of a friend of mine who says that everything and everyone beginning with the letter "J" has brought good luck in his life. And he was right. I guess it's how the world and fate works sometimes. How blessed you are to have Jack!