...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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Monday, November 16, 2009

Home Again, Home Again!

We were home for about 15 minutes. The Beloved hauled the last of our stuff in from the van. Then he uttered the words that I knew were coming. Just like when we'd barely walked in the door from bringing The Middle Little home. "When will the kids get home?" So I called The Other Mommy and explained the The Dear Daddy was wanting The Littles home. "I was afraid of that when you called to say you were coming home. Well, he's just going to have to wait for a while. They're just getting ready to eat dinner soon and I'm going to give them a bath and get them in their jammies before I bring them to you." She rocks. She is the ultimate Mommy!

After a great first visit from Grandma Emmie, I walked my new little boy down the hall to his room and changed his diaper. It wasn't supposed to be so soon that I was using all of those little items that I'd placed on the changing table just one week prior. The gown I put on him now hadn't even been washed yet this time last week. But here we were, safe and healthy and home!


Then The Beloved watched as I tucked our Little Butter Bean into his cradle by our bed. And we settled ourselves in for a nap while waiting for The Littles. And My Love tucked me into our bed once again.

It's corny that he does this, but it's also sweet. I love it. It's become a small part of our daily rituals and it is rituals after all that get us from one point to the next one when our lives are suddenly turned topsy turvy. I lay there drifting off to sleep, looking at tiny William in his little cradle, thinking how I'd just barely gotten a grip on the idea that we were expecting another baby, and now suddenly here he was! Safe and sound in his bed.

Then the doorbell rang! I thought I'd been asleep for five minutes but it had really been well over an hour! The Beloved sprang up and dressed quickly while I got William out of his cradle. I could hear The Littles asking about the baby as I made my way down the hall to the living room. When did this hall get so danged long?! The Littles stood by my rocking chair peering anxiously as I unwrapped Jack for them to see. Their little faces were lit up with wonder and curiosity. Finally My Girlie says, "Mom? Is he really okay? You know...is he healthy?" Yes I tell her or we would not have been allowed to bring him home. "So does he...does he have that thing...Down syndrome?" Yes I say, but he's still good. He's healthy and good. I asked if she wanted to hold him. "NO!" emphatically. Then a few beats later, "Okay. I want to. Hold him I mean."
And she did. And she handed him back before a full minute had passed. I'd barely had time to snap a picture.Jax looks tiny in her arms. Surely that's just one of those soft fabric baby dolls? He just looks bitsy!
The Middle Little sat on the couch to hold him next. He was googly eyed over his new baby brother. He patted his head, his face, his tummy, touched his hands. Kissed his forehead. Sweet! I didn't actually get a picture of that, but you can see from this picture that The Pod Pie is over the moon that The Other Mommy is holding Jack out to meet his brother! My Little Pod has a Pea Pod baby brother!

We settled with relative ease into our first night at home. I worried that William would need something but not cry for it. He cried so seldom. I still felt that his cries were weak and plaintive, not like the robust cries both of The Littles had had. He seemed to have no volume to him and he had yet to actually wail. Maybe if his needs had not been tended to immediately and he were actually allowed to build up to a full blown wail, then maybe he'd sound more robust. I didn't really think so though. Seriously, how much more uncomfortable could a baby be made than to be taken from his warm, cushy, quiet, dark and safe womb? I think the cries he made then qualify as wailing. Willie simply didn't have a robust cry.

Robust or not, William awoke every three hours. He'd let out one little sound. A few beats later, another. Nothing sustained. And when he sucked his tongue he made a few chirpy little sounds that I can only compare to a seagull squawking. A seagull trying to catch his breath. The only time Jack really put up any kind of fuss was when he spit up from his nose and felt like he was fighting for breath. Even then, his cries were short bursts of monosyllabic protests. But he did wake every three hours to eat. That was something. We'd start with that!

Oh yeah, The Little Spud also cried really hard for diaper changes. Again, it wasn't robust, but it may be as robust as he gets. I'd taken him to his nursery to change his diaper. He soaks his diapers. He goes from dry to absolutely drenched in an instant. Must be those dilated kidneys. He was hungry and wanting to eat, not to be terrorized by being naked and cold and getting a diaper change. He's really quite strong when he's upset and hungry. He nearly flipped over! He went almost all the way from his back onto his tummy. I think if the changing table pad had been flat rather than contoured, he would have gone right over. When he flipped back and landed on his back he really howled! And then I wiped him with the cold wipes trying to get the process finished. Boy this was going from bad to worse. Not only was he soaked, but as I lifted the new diaper to cover him, he let loose with a stream of pee and soaked his new diaper and gown. I just picked him up, soaking wet, and held him to me to comfort him. When he calmed I secured the new diaper as fast as I could and got him dressed in a clean gown. As soon as the gown was down at his ankles, he stopped howling. Poor baby. I handed him off to The Dear Daddy and went to change me!

William had quite a bit of spit up in the hopspittle. I wondered about the formula they were giving him. The same little bottles of formula they'd given me to take home. It was milk based. Both I and The Littles, while cheese heads now, were lactose intolerant as babies. They'd had soy formula when I'd stopped nursing them. Willie had some spit up, but he didn't outright vomit, and he had none of the gassy tummy aches that come along with lactose intolerance. But no matter for now, I was currently producing enough breast milk to feed him! I was unhappy that I couldn't actually nurse him, but at least I was making enough to nourish him. And this way, The Dear Daddy could feed him too!

As our first evening at home came to a close, we were all snugged into our beds and Jack was bundled up in his cradle in our room. He woke every three hours to eat, burped rather loudly and got his didee changed. I was tired and in pain, but it seemed that we could do this. We could pull it off!

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