...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 22, 2009

20 Week Ultra Sound

I called The Beloved Buttface at work today, as we'd gotten back into our 'happy place' and it was once again more common than not for me to call him by mid-morning. We'd chat for a few minutes, review our days ahead and then hang up with "I love yous." Well today he decided to pull a cruel and malicious joke on me. He thought it was a funny way to illustrate a point of contention that we'd had now for years, and didn't see any thing at all contemptible or callous about doing this while I'm pregnant and already so easily upset. I haven't really been frank with him about how terrified I am, on a daily basis, how stressed and anxious I've been about The Baby since before we even knew about the diagnosis, mainly because his coping abilities have been pretty thin as well and I didn't want to add to it. Besides, I really didn't want to have to watch as his head exploded. I was floored by this very odd bit of utter stupidity and I just couldn't believe he'd pull this crap when he has to know, at least on some level, that I'm already being tormented enough with my own grief and sorrow. It's been just two weeks for me too. I hung up the phone and had a good sob. Then I put it out of my mind. I had better things to think about.

Today My Girlie accompanied me to my ultra sound with the beloved Dr S. The tech said he'd given her permission to answer all of my questions! She explained every thing she was seeing and measuring and confirming the body parts and telling me what they really were when I guessed wrong a million times. She really is much more at ease now that we all know Jack's little secret. The the beloved Dr S came in looking all doom and gloom. I asked right away, "Do you have more bad news for me?" He smiled and said, "No my dear. The amnio result was the only troubling news I had for you." And it was all pretty good news from there.

Dr S is just far too tired. I've asked before and I asked again today, was I his last appointment for the day? "No, I am sorry to say, you are not. But that will change. No, after you leave, I have two more and then I have to go to the hospital to dictate and see patients and then I will be lucky if I get home by eleven o'clock tonight." Then he said that from now on, he wanted me to be his last patient of the day so he could spend extra time on my ultra sounds, and that I should tell the appointment girl that he wants me in the 4-D room, always.

And then he started repeating my scan. He said that the brain ventricles remain slightly enlarged, not alarmingly so, and the same for both kidneys. He said that this is a common finding with Ds pregnancies due to the concomitant finding of hyperhydramnios; however, I had no evidence of too much amniotic fluid - mine was just right. Then he started really looking at the heart, and there was more good news. He said that the 'abnormal focus' in the heart, another common finding in Ds pregnancies, was now "so small it is insignificant." Then he said to hop up and go into the 4-D room, with the big LCD screen over the table, that he'd be right there.

Once there, he reminded me that I still had about four weeks to change my mind. I reminded him that I'd already made my firm decision. He took both of my hands into his and said, "Tracy. Promise me, promise me, that you will think about this. I am not speaking with you as a patient, I am speaking with you as my friend. You are very, very dear to me, and I know that if you are not absolutely sure, absolutely positive, with no doubts in your mind, that if this baby is born with major health problems, if you then second guess this decision, it is going to tear you apart. You will not be able to live with yourself unless you are completely sure right now that this is the proper thing to do." I looked him straight in his kind, concerned face and promised him that I'd already thought long and hard and I knew for certain that this was the only proper thing to do. "Okay my dear," thumping my knee like a grandfather might do, "I believe you. Only promise me that you will never look back, and I promise you that I will do what ever I can to see that you make it as close to your due date as possible." And then the fun began!

After printing several pictures of the baby, he switched to 4-D and let the Girlie and I watch little mini clips of The Baby in motion! It was so incredible! We got to watch him moving his arms and legs and touch his face and turning his head! It was the most amazing experience! Dr S said Jack's vigorous and strong activity may well indicate that he could be very high functioning! And then he printed three 4-D pictures that are so clear I can see Jack's little ears! I fell in love with My Baby all over again! The Girlie had been surprisingly quiet during the mini-clips, and as soon as Dr S left so I could dress, I found out why.

I still don't know where or when she heard the word abortion, and she does not have the memory capacity to tell me. I am beginning to regret that I was so honest about why some people choose to abort. But she knew that Dr S had been talking about termination. All I could do was hold her tightly while I stood there half dressed and assure her again that I would do everything in my power to make sure her Baby Brother would be born safely. She cried. She was still scared. She stopped sniffling when I reminded her of Dr S's pledge to do everything he could to keep Jack safe until he was ready to be born. My Girlie. She is such a sensitive soul.

Once the Dear Daughter was calmed, I dressed and we collected our awesome new pictures and were just about to walk out of the office into the hallway. Then Dr S came rushing out, holding a finger up to detain me while he held a cell phone to his ear. When he hung up he said, "Oh, my dear. I am so glad you did not get away!" He handed me a piece of paper with a name and phone number written on it. "This man is like an uncle to me. He was my mentor through medical school. He has a child with Down syndrome and I called him to see if he would speak with you. He is a good man. He said he would wait in his office for your call, but he needs to leave in about 30 minutes. Go right home and call him. Please." I thanked him profusely and ran right downstairs to call him from the van. Okay, so we took the elevator down, but you get the picture!

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