...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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Wednesday, July 8, 2009

The Call, Oh The Dreaded Call

I wish I had written a more detailed record of that phone call, but I think I was just too stunned finally having heard the news to do more than document the fact. Reading back on the file lovingly renamed 'Jack-Jack' I see only the sterile facts. It's a boy. There are three copies of chromosome 21. He will have Down syndrome. There is no test to determine how affected he will be. Only birth with give us that information. The doctor will look closely at the heart and brain at the 22 week ultrasound, but yes, do keep my appointment for July 22 at 20 weeks.

The actuality of that phone call, as I remember it, was of Dr S's voice being very warm and gentle. He didn't beat around he bush. "My dear, we have the amnio results and it is not good news." I asked directly, "Does the baby have Down syndrome?" "Yes, my dear. He does have Down syndrome. I wish there was better news, but that is what we have." He never contracts words. Ever. I asked if there were any more chromosomal abnormalities and he assured me that there were not. He did ask was I still sure about continuing the pregnancy. Yes I was. He said he still wanted me to consider the options before I really made up my mind for sure. Either way, he says, he will respect my decision and support me to the fullest. I believe him and thank him for his tact and warmth. Now cut sideways to my Dear Daughter, a very tender and sensitive soul, lounging on the couch in her blanket. I have tears softly rolling down my cheeks, but I'm not loudly boo-hooing. She knows something is up but she doesn't know what. The words she's heard so far mean nothing to her, so she has no reason to be alarmed, and Mommy being upset and tearful these days is frankly, I'm sorry to say, nothing new. So when I say to Dr S that the only way I'd terminate is if the baby was anencephalic and has zero chance of survival and would die anyway, she was suddenly all ears and the look on her face was terror. I damn myself for not taking this call into the bedroom. I quickly hang up with Dr S and bum rush My Oldest into my bedroom. I want her sequestered before she can alarm The Youngest, Soon-To-Be-Middle. He was happily playing in his room. I absently think to myself that I don't have to deal with me right now, because I need to comfort My Girlie.

I push her into my bedroom and close and lock the door. Her face is a reddened mask of tears and fear. "It's okay" I tell her very firmly. It occurs to me, not for the last time, that I'm convincing myself too. "Did the baby die?" No, I tell her. The baby is fine, he will be okay, I promise her over and over again but she just won't be convinced. Even while I'm holding her and stroking her silky soft back, she just won't be comforted. I finally get out the Doppler to let her hear for herself. Then I sit her on my big bed where she loves to snuggle with me and sitting across from her with our knees touching, I begin the hard talk. Mommy was crying because the big test Mommy had says the baby will have something called Down syndrome. Does that mean he will die? No. It doesn't. It just means he might be a little slower than some babies. He might not be as tall as her or her brother. They are projected to be 5' 11" and 6' 5" respectively. It might take him longer to crawl and walk and speak, but he will be a perfectly good baby all the same! At that point, what I knew about Down syndrome could be exhausted on all of one sentence. She has one thing to say and she says it with all the conviction of her soul, "It will be okay. He will be loved." Period. We laid down in my big bed and held each other for a while, me stroking her back, her hair, her face. Then, "Mom?" in a more perky voice,"Did you say it's going to be a boy?" I don't really know I tell her. I think the doctor said it is a boy, but I'm not really so sure. Let's call him back and find out! When I got Dr S back on the phone to confirm that we are indeed having a Little Brother, I gave my Dear Daughter a thumbs up! She was correct when she predicted a boy. With the tears now dried, she ran down the hall to announce to the Bothersome Brother that she'd been right all along and they were getting a Baby Brother. Dr S tells me again that he will respect my decision and provide any support that he can.

While The Littles are playing, I retreat back into my bedroom and lock the door. "It" is no longer out there. It's here now. It came for me. The words I could not utter, even to my loving God, have finally been spoken. Down syndrome. I settled in for just a few minutes of indulgent crying. What are we going to do now? It was a non-question really. That question was answered the instant when The Newest's, our Little Baby Boy's heart started beating. What will we do? We will have a baby. A Boy Baby. With Down syndrome. And it will be alright. Right?

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