...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 15, 2009

A Day for Revelations

Today I called Mom in Idaho first thing. She's probably had at least a day to digest the news. She was understandably unhappy that I hadn't told them about the pregnancy when they were here in May. She felt slighted. I told her how sorry I was for having to keep it from her. I explained that I'd wanted to tell her and almost had so many times, that I'd almost invited her into the bathroom with me that day to do just that. There were so many times that I'd wanted to just pick up the phone and call her but at that point the pregnancy was still so very tentative, that I'd still been bleeding heavily at that point, and the more time went by with more complications, the more unsure it seemed. By the time we'd had the amnio, it just made sense to wait until I knew the baby's sex. Then we got the news about the trisomy 21, so that took more time to digest and figure out what to say. She said the thing that had really upset her was that I'd addressed the card to Mr & Mrs R. Were they chopped liver now? No, they were not chopped liver. Hadn't she ever noticed that Christmas cards were always formally addressed to Mr & Mrs R? I also explained that I'd addressed about 90 envelopes in one sitting, and that there was no slur intended. We made small talk and talked about family and ended the conversation on a very good note.

And then a surprise. I'd given up my daily midday calls to The Beloved and I was trying to give him space to work things out. And today, wouldn't you know, he called me at about 10 am this morning. He said he was calling to see if the gardener had arrived yet. I told him that I'd run into him on the way home from the pharmacy, and he said he had one lawn to do and then he'd come to our house. I'd barely told him all of that when he asked, "Was there something you wanted to say to me this morning?" I said no. He asked if I was okay, and I said I was fine. He asked what was going on and I said "Nothing." So he said, "What's the matter? Talk to me." So I told him he could have at least said good bye to me this morning. That opened the hole to the gaping abyss and we both fell in. Throughout our long history together whenever we've had difficulties with each other we have habitually jumped head first into the dark, slimy, deep end of the pool where the monsters hide. We've always started off in the worst possible place and have had to struggle to find each other again and then work our way together to the clear, clean, safer water. This was no different.

He was ready to talk. He'd decided to take the wall down. I knew it when he said "Talk to me." And ironically, the hardest and most soul cleansing discussions we've had together have been over the phone. I don't know why that is, just that it is. He said he wasn't okay with my decision, and he still insists that I said I'd abort if there was something wrong with the baby. He said he still loved me very much, that I'd never know how much. He said that he couldn't condone the decision I'd made to keep the baby. He was worried that if something happened to him he couldn't be sure that we'd all be alright, even more so now with a baby with Down syndrome. He said that if something happened to me, he didn't know how he'd be able to cope with a child 24/7 that he didn't know how to deal with. He was very afraid that The Littles would get picked on because of the new child's mental retardation. He said that he was trying to respect the decision I'd made but that he was really struggling. He said he'd felt the pressing need to start making some decisions for himself and that he wasn't sure of our future together. He said that it would kill him for us to end, but he just wasn't sure. He'd finally opened up to let me see what he was feeling, how he was hurting, what was in the 'worst possible place.' He spoke at length and by the ending of this discussion he said that maybe he was seeing things from the worst case scenario, that maybe the baby's prognosis would be less severe than he was seeing. He said "we" will know more when we see the doctor next on July 22nd. He also said that he'd hesitated to speak to me about all of this because he didn't want to upset or hurt me. He sounded sincere in that. He always does, because he always is. Never in my life with him has he told me something just because I wanted to hear it. He may not always say what he's thinking about, but if it makes it past his lips, he means it. He even ventured to say that once the baby was born maybe it wouldn't be as bad as he was picturing, that we'd just have to see.

I pretty much let him speak and tried not to interrupt much. I didn't know how soon I'd get another chance to hear what he thought. When I did speak it was to agree with some of the fears he'd expressed. When it seemed he'd spoken his piece, I said that I hadn't wanted this to happen either, that I was still struggling with the fact that we were even pregnant again, terrified daily that we'd lose another baby, even before the amnio results. And having felt the baby move inside me and having heard it and seen it, I couldn't kill it. He said he understood that completely and that he wouldn't ask me to abort, but that he just felt so helpless about the Down syndrome, that it was all out of his hands, beyond his control. I told him that I could understand that because I felt helpless too, and that aborting would be so foreign to me that I also felt powerless, that from the moment that I knew we were pregnant, that it was out of my hands, that I also had no control. I said that from the moment I first knew, that it was a baby to me, his baby, every bit as much as both of The Littles, and that I too had absolutely no choice. I think he finally understood.

When we hung up he said he loved me without mumbling.

And then I got another surprise that nearly took me off my feet! My youngest older brother's father (what???) had written me a letter. I'd long suspected that he was actually my father, and I do still carry his name, but after 44 years of knowing about me and never acknowledging me, why did he reach out now? The only two people we have ever had in common have been laid to rest next to each other for long years now. He wrote that he'd wanted to reach me for some time now, and had found my address on the pregnancy announcement that I'd sent to my youngest older brothers other sister. (Got that? Good!) I know it's confusing. Try reading it slowly, out loud! He requested I not tell his other daughter that he'd written to me, could we please keep it our little secret. He wanted to congratulate us on The Baby. He also said he'd wanted to thank me for loving my brother so well throughout his difficult life. Was this guilt talking? I don't know. It was weird. Just plain weird!

And then my dear friend Bits called. She'd had an experience in children's court that day and was anxious to tell me about it. There was a gal in the Children's Center at the courthouse, employed by the courts, to keep children happy, safe and supervised while their parents are in court. And she has Down syndrome. And while she wasn't the person in charge, the boss, she was gainfully employed by a government agency and happy with her work!

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