...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


MusicPlaylistView Profile
Create a playlist at MixPod.com

Thursday, July 9, 2009

Breaking My Beloved's Heart

This is a post I don't want to write. I don't want to know it happened and it still hurts me to remember that night. The Beloved got home. We progressed through our evening. He'd asked a few times if something was wrong. I think I mumbled something about being tired. We got the kids fed, bathed and into their rooms to watch a movie. I threatened them with loss of limbs if they came out before I said they could. I sat with The Beloved on the couch. I asked him to turn off the TV. He turned to me and I began...

I thought that the look on my face, that I'd sent the kids to their rooms, that I'd asked that he turn the TV off, the slow and quiet approach, the tremor in my voice, so many things that should have given him alarm but didn't, might have prepared him at least a little. It didn't. He was not prepared. Quietly I said, "I got the amnio results back." Pause. Why aren't the alarm bells going off for him? "We're having a little boy." Pause. Why don't I look elated? "He will have Down syndrome." Finally a reaction. He couldn't have looked more shocked if I'd stood up and slapped him across the face. He keeled forward and put his face in his hands. After a few minutes he straightened but was still holding his hands to his face and asked, "What are we going to do?" I said quietly that we'd know more after the 22 week ultrasound. The doctor would look carefully at the brain and heart and would have a good idea if The Baby would need surgery at birth or not. He said we'd be looking at a lifetime of financial burdens. I said that The Baby would automatically have state medical aid with the diagnosis of Down syndrome, in addition to our medical insurance. He looked me straight in the eye and said "We can't do this." He was slowly shaking his head no. I said quietly, "I can't kill it. I can't kill him. I've felt him move."

It took a long time before he spoke again. He enumerated the many reasons why we should not be having this baby. He is not an unkind man. He is a very thoughtful and giving man. His first thoughts were of what was best for his family; me and The Littles. His first thoughts when we found ourselves expecting were for me and The Littles. My health was a giant pile of ammunition in his arsenal of arguments. The needs and well being of The Littles was another huge pile. "But we talked about this. We talked about this very thing. You stood right here in this very room and said you would terminate if this happened." Now it's my turn to be shocked to my very core. "What? When?" He said that we'd discussed this possibility shortly after we found out that we were pregnant and that when Down syndrome was brought up he had said "I don't want that," and that I had said, "I don't want that either." And I did say that. I remember it now. I was walking into the kitchen. But I never intended it to mean that I'd abort. I did say that I didn't want that. But who does? Who actively desires to have one of their children be handicapped for life? Who actively wants for their child to have chromosomal abnormalities that may cost him a life of poor health? Who in their right mind intentionally wishes for their child to possibly, or quite likely, be ridiculed and hurt by the nastiness of others? Who? That's what I'd meant. I'd never meant that I would abort. And there it was. The great divide. A grave misunderstanding that I don't have the words to begin to straighten out.

"What about you?" he asks. "What is this going to do to your health?" I told him that the The Baby having Down syndrome would not influence the pregnancy. "And what about after?" he asks. "How long are we going to live? Who is going to take care of him when we die? What will happen to him then? How is he going to cope, to get along when we aren't there for him?" The very idea that either of The Littles would be able to care for him when we eventually die is too far off to consider. But The Beloved was looking ahead that they may well eventually be saddled with The Newests' care. That The Youngest, Soon-To-Be-Middle will eventually be out on his own and readily capable of marrying and caring for his own family is not really unheard of. He is a smart little whipper-snapper and I am convinced that what ever he decides to do with his life, he will be very successful. I could look to his rather high IQ as evidence, but I live with the child and see those wheels spinning and I already know, or at least suspect, that he's hatching a plan to take over the world. He may well build the better mouse trap. I can easily see him building an empire on graphic arts - at 6 years old he is really, really insightful and detailed with his art. I can see him being a rock star - he has a genuine love of a very diverse musical library. My big fear for The Youngest, Soon-To-Be-Middle is that he will take his giant ball of smarts and improve on my youngest oldest brother's career in crime. The kid is brilliant. That kid is much, much too cunning, charming, skilled and wise for his six years. Time will tell.

It's much easier for me to believe that if anyone takes responsibility for the The Newest, it will My Girlie. It would be like her. At ten years old, she has long said that she will not have her own babies, that she will adopt someone else's babies, "So they will have someone to love them and take care of them." Not what a mother wants to hear, but hey, the girl has a big, soft, squishy, loving heart. She isn't always the first to look out for someone else, but when she does see it, she will go the extra mile. And Lord help the person who is caught doing something mean to someone else. She will send the offender to meet Their Maker and pronto! She is the embodiment of the idea that she can pick on her younger brother all she wants, but Heaven help anyone else who does. She's always had a very tender heart. She's the girl who walks any injured student to the nurses office at school. She's the first one to respond if anyone cries. She's the girl who shares her little 2" brownie with four of her friends. She's the girl who receives candy at school and brings it home to share with her little brother, even though she says he's a pest. My sweet, sometimes fragile Girlie has always had a soft spot for the vulnerable. Maybe, just maybe, God above has known what He's doing all along in sending this particular baby to our family, ya think?

The rest of the evening was rather gloomy. The Beloved and I spoke very little, and then only out of necessity. I could see very clearly that he was struggling. And he felt blatantly betrayed. By me. Once that wall is up though, it stays up until he is ready to take it down and let me in on his pain. I know it's going to be a long time before that happens. But I also know that what is troubling the him most is the welfare of The Littles, and that eventually, he will incorporate The Newest into The Littles. I already have, but then, he has just heard this news that really, I have known all along.

And he still tucked me in that night.

Post Script: In a later conversation with The Big Sis, I was relating how shocked I'd been that The Beloved has misunderstood what I'd said. She said to me, "Yeah well, I'd thought that same thing myself when you told me about that discussion. That's why I thought when you first told me about him having Down syndrome, that you were going to tell me that you would abort. But I still don't know how I ever could have thought you would do that." So. The two people in my life who know me the best, the most intimately, the most nakedly, thought I'd said I would abort. My betrayal of The Beloved is clearly my fault. And I don't know how to repair the damage. Or if I even can.

No comments: