...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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Are You Happy?

Are you happy? It's a simple enough question. Are you happy with what you have? Your lot in life? I think I am. And that kinda scares me, because every time I have this feeling of contentment, life throws a wrench at my head. But for now I think I am happy.

Sure I'd like work to be more steady, money more plentiful and the hassles of day to day life to be a little less bountiful. I'd like to know the source of the mystery leak in the garage that The Beloved searched for but has since disappeared. I'd rest easier at night if I knew our dryer was not going to catch on fire sometime from lint that falls back into it when I clean the lint trap. Oh yeah, and there's that fear I will catch on fire someday. (Note to self: seek therapy regarding catching on fire.) And I could do with a few more sleepless nights for unknown reasons. That was sarcasm! It truly does suck!

But I think I am happy. A year ago I would not have said that so easily. Sure I was anticipating William's birth, and that was reason enough to be happy. But there was also that deep fear. For him. Of him. For us. For me. For our Older Littles. For The Beloved. There were so many unknowns. So many questions we couldn't answer yet. And now we are beautifully, happily "we."

And I think I am happy. Or maybe it's simply that I am at peace. Life is good. For however long it's going to last this time. Because, you know, there's always a wrench out there with my name on it. This must be what others in my big fat shiny new Down syndrome family mean when they say they've been hit by the bus. I don't have a bus. I have a wrench. A big ugly heavy pipe wrench. With ugly orange paint. And it hits me upside the head most times. Stuns me every time. And even when I see it coming and try to duck, it still hits me. And have you ever noticed how bad tools smell? They're gross. You get done doing a job and when you're finished you notice this terrible smell on your hands. It's the danged wrench! But I think I am happy for now.

And sometimes, even when I see the wrench coming, all big and heavy and twirling in the air, ugly orange paint chipped from the repeated impact with my head alternating with the bare metal underneath, I just have to just stand there and let the damned thing hit me. Because if I don't, it's going to hit someone I love instead. Like William. I could have ducked. I had plenty of time to duck. I knew how to duck. Many people said I should duck. But that nasty bastard of a wrench would have hit him and he would have died. So I stood there and let that wrench hit me instead of him. And I am so happy that I did! Yes I think I am happy for now.

So is life easier now? No. Not particularly. The bills still need to be paid. Kids still get sick. Dinner sometimes burns. Appliances still break and I have to remember to get the oil changed on the mini-van. The Beloved will have my head if I blow up another motor. Okay, so there was that gash in the oil filter last time that I pointed to in my own defense, but The Beloved asked in his sing-song-sarcastic voice, "And how did the gash get in the oil filter? Could it be your driving? Were you off-roading? Lamb chop?" But I digress. I think I am happy.

Life is more complicated now. A lot more. We have the ART in our home five days a week, one person for each Older Little, for two hours each day. At last count, Will is getting five different services, also, thankfully, in our home, using up another 6 hours per week. I am still working for a nursing registry while I hunt for permanent work. So on a typical day, I sleep as late as I can in the morning. Get up with Will and feed and diaper, burp and snuggle him, get thoroughly enchanted by him in case any of his baby magic wore off over night, and get The Older Littles up and at 'em, feed them and get started with their day. The Middle Little still thankfully takes a nap each day. And when he doesn't actually sleep, on the days that I have to work, I can count on him to stay put in his room with a favorite video. The Girlie is entirely trust worthy and will entertain herself with toys and books, and play Pogo and watch TV. So, noon usually finds me feeding Littles, diapering a small butt and herding and preparing those who nap to nap. Then Will and I snuggle into our big bed to settle down. And he immediately pulls out the baby charm and all of his baby cuteness because he seems to know that this is his time to have me all to himself! And I oblige. Of course I do! He's just too much to resist when he rolls toward me and giggles his giggle! It's up and down from there. Literally. Up to answer the phone. Back down. Up to answer the door. Back down. Up for Willie to eat and then attend which ever therapies he gets that day. Sometimes back down, sometimes not. Back up to tend to various needs of the Older Littles. Back down. Up at 5:00 to find out if I have work that night. Back down for 30 minutes if I don't, into the shower and out to dress and pack if I do. Between all of this, I have to fit in various doctor's and dentist's appointments for The Various Littles, housekeeping, bill paying, cooking, grocery shopping, errands and all the other stuff that makes up day to day life. And then somewhere in the middle of this, The Dear Daddy gets home! I'm committed to not working Tuesdays and Fridays...family nights. So, in the spirit of being present, if not fully awake if I've worked the night before, I have stacked most of Willie's therapies on those days. Tuesdays it's ST at 10:00, PT at 12:30, OT at 4:00. Thursday he has EI at 3:00 and Fridays he will have vision therapy at 1:30 and another hour of ST at a time yet to be determined. We're still working out the details, and it will get hairier as I get more work, but so far so good! Theoretically this will all get easier when The Older Littles go back to school, but then I have to factor in IEPs and the ritualistic daily morning, noon and early afternoon calls from The Middle Little's  teacher, aid and vice principal. Definitely a wrench. But right now, I am happy.

I like being back to work. I hate leaving little Willie. I like being among other adults. I love patient care. And the hour commute? Pure bliss! No screaming, whining or crying. No bickering and no refereeing. I get to choose the CD I listen to, and the volume! If I want to drive-thru for a bite to eat on the way I can without spending $40.00! And with no grousing from the backseat on where to drive-thru! I get to choose! I can talk on the phone without having to say every few minutes to "keep-it-down-I'm-on-the-phone!" I can think straight for an hour. I can hear my own thoughts. And when I get back home, the reception is awesome! The Middle Little's face is lit up and he says, "Mom! You're home!" and throws his arms around me, right there in the entry way. The Girlie will say, "Hi Mom! How was your night? How was work?" And Willie! Willie is the best greeter ever. He throws his arms around my neck and grabs two hand fulls of hair. He stares at me wide eyed as if to say, "Is it really you?" Then he grins and buries his wet slobbery open mouthed little face into my face and burrows in, pulling me to him and making little "whu, whu, whu" breathy sounds. Yep, coming home is the best! And the paycheck doesn't hurt! So yes, I think I am happy for now.

That wrench is out there. It will hit me. And I'll pull myself back up again and I'll once again be happy. Wrenches come and wrenches go. We will deal with them, as we always do. I don't know what the point was in writing this out. Just something rattling around in my head. Maybe because it's that time of month that all those online baby groups I joined while I was pregnant are emailing me to update me on what progress Willie should be making. On what milestones he should reach this month. Because you know he isn't. And that's a wrench to the head. A small one. Instead of dwelling on that, I'm going to go scoop Willie out his cradle. I hear him cooing on the monitor. And I know he will greet me with only slightly less enthusiasm than when I've been gone all night! He is a balm to the welts left by the wrench. I think I am happy for now. Therefore, I am!