...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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Thursday, August 12, 2010

Darling William

Darling Boy, you are 9 months old today. You are also, by far, the single most wonderful being to grace my life, ever. My sweet boy, saying I love you just doesn't seem enormous enough to contain how I feel for you. It's not that Daddy and I love you more, it's just that there's something about you that is divine. You are deliciousness itself. And sweetness and attitude and humor and light, starlight, moonlight, sunshine and lightning.

But I have to tell you, I'm getting pretty tired of your crap! As in CRAP! As elated as I was to see your very first poopy ever - because it meant your bowel was intact - I have seen quite enough of it in recent weeks! When I switched you from Similac to Prosobee, you went from a 14" hard rope every five days to a 6" hard rope every other day. Adding the Simply Thick had you pleasantly producing a big soft squishy poop every morning. I don't know what you're doing lately, but it's not fun. Your diapers fit, and yet, we've had far, far too many blow-outs of the un-fun kind! So while I was not planning on writing your 9-month letter about poop, here we are. Let's illustrate:

Last Sunday, you had 7 huge poopies. Huge. Seven of them!

Tuesday night your Big Sissy was snuggled into bed but I had to summon her for help. I'm not sure how you did it, but you left two large egg sized poops on my thigh while I was holding you. I didn't notice them until they started getting cold. I was shocked to find another goose egg sized pile o' poop in the chair next to me, two little hen's eggs sized blops of poop on the carpet under my chair, and of course, the rivulets of glop that they left while sliding down the metal piping of the chair to the carpet. It was phenomenal. I wish I had taken pictures, but to be honest, I was overwhelmed with poop and The Girlie was too busy alternating between hysterical laughter and mortified horror to think about the proof that photos would provide.

Then there's the sneak up the back and into the linens of your cradle poop.

Or the slip out the side and down into the leg of your sleeper to your foot poop.

And the ever popular slip right up the front of your diaper and into everything while you're swinging poop.

And then there are the really fun leak-out-of-every-opening poops.

I am sick of poop! And the laundry, and that fact that inevitably, I do not discover the extent of your little bombs until they have leaked through your clothing and into mine...which happens right about the time the raw sewage odor assaults my olfactory centers...or about 2.5 seconds. It also coincides with my realization that you're doing that devilish little wiggle you only do when you've left me some "doo."

So stop it already!

At 9 months you have quite the repertoire of sounds! The general consensus is that you are indeed saying "Mama," mostly because it happens when I leave/enter the room, or when you can hear me but can't see me. You say: buh, dadadada, eeehhh, aaaahhhh, and a surprising array of consonants and vowels, including a,e,i,o and u, and quite frequently combine the b, m, p, and d sounds with multiple vowels in one long stream of vocalizations. You make this funny little sound quite often that I can only describe as "birp" but I am not certain of the vowel. You do it too fast without prior notice! I am told that this bodes well for your future speech abilities. I don't know about all these things, just that it makes me really happy to hear your cooing lilting voice and that you're such a happy little guy that you "sing!"

So far you've eaten rice cereal, fresh avocado (don't wanna think about that in a baby food version!) applesauce, fresh and jarred bananas, pears, peach yogurt and carrots. Tonight I gave you a few tiny bites of green jello. You swallowed it down and opened your mouth for more! Next up will be butternut squash. Oh...and I gave you a Mum-Mum, but you were not impressed! Your Daddy gave you about 1" of RC cola via straw last weekend. You shook your little head and arms like a tremor, your whole body really, but swallowed and opened your mouth for more. Next taste, same tremor, swallow, mouth open. Third taste, the surprised look persisted, but the tremor like shaking stopped, and you grinned after you swallowed! And again with the mouth opening for more! I also gave you a dessicated Red Vine last week for your chewing strength. That was a big hit with you, but the red slobber trails down your chest were not a big hit with me! You are eating 8 ounces of formula on average of 7 times a day.

You can wear a few 6-9 month outfits, 9-12 if you're in a "tent" mood that day, but 3-6 months clothes are still your best bet. You are still in a size 3 diaper. Your newborn socks still fit, but you can also wear the next size up as long as you don't move your feet or legs and there's no strong breeze.

You can sit in a supported position for up to an hour. You have logged a full minute and a half of hands out front sitting. You no longer have a bloody fit for tummy time. You clap occasionally. You transfer toys from one hand to the other, but still drop a toy you're holding when presented with another toy (Just a month ago you were holding two toys - not sure if this is significant). You bang toys on whatever surface is handy, your chest and tummy if nothing else is available. You spend a lot of time playing with your feet. You reach for your reflection in the mirror. You will pull to a standing position anytime you have the opportunity! Your weak neck/head flop is more of an indicator of you being tired now than anything else. You roll onto your side to reach toys, and sometimes completely over if it suits you. That tongue still spends far too much time out of your mouth but you also spends minutes to hours during your day with full lip closure. You curl your tongue (inside your mouth, thank you!) into a tube quite often. Sometimes you suck air in through the tube. You don't have the prominently deep fissure on your tongue that many with Ds have. Your tongue will form a nice bowl shape inside your mouth while you vocalize, and it cracks me up when the little tip sticks up pointy and tremors with vibration, usually when you are "yelling!"

Your day usually starts when you coo loudly from your cradle to alert me that you are up and ready to eat! You smile big and happy when you see me! Off to the nursery for a diaper/sleeper change and mini-bath. Trip to the laundry while you lay on the floor and play with the baby in your mirrored closet doors. New gown for me since the one I was wearing is now pooped. Then for a snuggle in the rocker and a bottle for you, coffee for me. You are usually still eating by the time the Two Olders are out the door for their buses. When you're finished I try like mad to pat/pound/rub/bang/beat/bounce/jiggle/hammer a burp out of you. Eventually it's usually a position change that brings up the burps! Then it's a diaper change for you and nightgown change #2 for me. You play for about an hour and a half, either in my arms or in your swing, and then you start making the "Mmmm, Mmmm, Mmmmm" sounds that mean you are hungry again. Midway through bottle #2 you get spoon food, finish bottle #2, more 'elicit a burp activities' then you tucker out for a 15-30 snooze in my arms. I try to lay you down, you wake up immediately bright eyed and ready to play. Late morning sees bottle #3, more burping, a diaper change, and a nap for both of us in the big bed. You also spend a good 20 minutes charming me with your baby antics, smiles and coos, rolling toward me for snuggles, until your lids won't stay up and you fall into a deep sleep. Sweet nap times, ours! Afternoon sees The Olders home and bottle #4, more burping activities. Diaper change. Often an outfit change. More play. Therapies of various nature. Adoration from the gals from the ART that come to see The Olders. Lots of hugs, kisses, snuggling. Swing time, floor time both on and off the tummy, play time in the high chair. Play time when Daddy gets home. Late afternoon brings bottle #5, burping and a short nap. Play time with The Olders. Diapers. Cuteness. Dinner time around the table either has you playing on the floor or being given a bottle in my arms. Soon you'll be at the table with us, playing with toys, eventually eating! Hopefully, one day, holding your bottle and sippy cup. Either way, bottle #6 is on the horizon, and the inevitable burping Olympic games. Nighttime sees The Daddy all to yourself. Bottle #7. Diaper changes. Pajamas. Snuggling. A tuck-in in your cradle by our bed. Sweet dreams until morning. Sometimes you will wake up in the middle of the night and coo for a few minutes. You put yourself back to sleep nicely.

It's hard for me to believe it's been 9 whole months. I was so worried. And we've all done fine. Really, really fine. I simply adore it when I pick you up onto my shoulder and you immediately start patting my back! And while I will likely modify this post a million times, remembering things I wanted to write, for now, let me just say, I am so glad you came to us! We love you darling boy! But seriously, enough with the poop already!

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