...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, May 12, 2010

About Those Glasses...

Okay, so I've been trying not to worry too much about how serious Jack's "small optic nerves and disks" might be by trying to picture how danged cute he's going to look in glasses. So today kinda side swiped-me.

I've noticed for about the last month that if The Girlie is sitting on the couch across the room, and Willie is on the floor between us, she will ask "What?" if I look over to check on Willie. Same question if I look at The Pod-Pie at the other end of the couch. Or down the hall. Or pretty much anywhere in her general direction. So I conducted a highly scientific test. Don't try this at home, I am a professional. I looked right at her, past her, down at Jack, at the picture above the couch, down the hall, and back at her. Followed each time with "Where am I looking?" With the exception of the one time she answered, "Why do you keep asking me that?" her answers were all the same. "At me." I asked if her vision was ever blurry. After I explained what that meant, she said "Sometimes." So I asked if she had any trouble reading what the teacher wrote on the board at school. To which I got eye rolling. Yeah. Already. "Mom, you know I sit in the front row." Okay then. Stupid me. But I persisted. "So do you ever have trouble reading what she writes?" And it turns out, "Sometimes. Well. A lot actually. But not always." I can't wait til she's 16 and knows everything!

Since I was taking her to see the Tater Tot's eye doctor, I thought I might as well get Podifer's eyes checked too. En route to the 3:00 appointment, for which we were twenty minutes early, The Girlie asks, "Mom, do you think I'll get glasses?" I said it was highly likely and asked how she'd feel about wearing glasses. "Good." After a few minutes she started listing the girls in her class who wear glasses. And then every few minutes she'd get animated and add a name to the list. I never bothered to ask Pod-Pie how he'd feel about wearing glasses. His eyes are fine. They both read well. "Mom? Do you think they'll give me glasses today?" And I said I didn't know, that they might have to order them special for her eyes. I don't know about these things. I didn't need glasses until after I'd hit 40 and you don't have to order them from the rack at Wal-Mart or when you find some cute ones in the dollar bin at Joanne's Fabrics!

So while I fill out endless reams of paperwork, there's a kid there named Sam, and he looks to be about four years old. I know his name is Sam because his Mother uttered it (and often barked it) about every twenty seconds while little Sam bounced off the walls, the chairs, the floor, the coffee table. It took me right back to My Pod Pie and the early days when containing his hyper-kinetic spinning mass of energy was like trying to put out the sun by spitting into the sky. Sam's Mother met my eye. I tried to give her my best "I-know, I've-been-there" smile. And I gave a big fat smile to Sam as he whirled by. His Mom looked at me funny so I inclined my head toward The Pod and nodded. He was busy doing his math homework and didn't see me nod. Sam's Mom studied The Pod for a few minutes and began a tiny little up curl to her lips as she watched him. Then Sam's name was called.

Then our names were called. They both did poorly enough with the simple eye charts that they were advanced to the next round and some sort of amazing machine took computerized pictures of their eyes. And The Girlie wants to know, "Do I get my glasses now?" Next we went to a waiting room down the hall where Sam's Mom looked relieved to have been put in an empty exam room while he waited his turn. When our names were called, The Girlie was first up to sit at a machine with dials and round eye pieces and twisty little gadgets while she looked at numbers and letters projected onto a wall. And the guy doing the exam asked why she hadn't brought her glasses. Then he whirled around to me, busily bouncing Jack in the corner by the door so I could keep an eye on The Middle Little, to confirm that No, she's never worn glasses. How does she do in school, he asks. "Good" I say. "Amazing," he says. "So do I get my glasses now?" and he tells her she will see the doctor again to decide that. Sad face as she takes her chair in the hallway. Next up is The Pod. He seems to be doing much better I think because he can read much smaller letters and the guy doing the exams does not ask any incredulous questions. With some flips of the dials and turns of the twisty gadgets, he can read the few letters and numbers he missed. Okay, so collect $200.00 and pass Go, down the hall to the next doctor. This doc seems to think that The Girlie's vision is so poor because she's taking such high doses of a blood pressure med. No, she isn't, and I corrected the first doctor's sloppy writing. "Oh, okay then. I see what this is," she says. So she consults the notes from everyone we've seen so far and asks "She's really never had glasses?" I tell her that The Girlie has only ever had visual screenings at the ped's office and she'd always done fine, and I review what's been happening in the last month. So she checks The Girlie's vision with another funky machine with a bunch of other gadgets. She says to The Girlie, "Oh your eyes are very, very healthy and you're going to see much better with your new glasses!" And even from where I am standing across the darkened room, I can see the huge smile spread across My Girlie's face! What a kid! Next up is My Middle Little. I tell the doc she may have to give him a directive and then wait a beat for him to respond. Apparently she noted his meds too, because she says, "Oh he'll do fine. My son is autistic too." And he did great, and she also told him how healthy his eyes are and that he will see much better with his new glasses! Hmmm....he must have been as surprised as I was because for once he was speechless.

Okay...so by now it's 5:30 and we are ushered across the hall to the actual optometrist's office. And there's little Sam having a screaming fit on the floor while his Mother is clearly too done in from the day's events to immediately respond or to meet the eyes of the three other patients ahead of us in line. So I made an executive decision. We're coming back in the morning. First thing in the morning because they don't give appointments. My cheerful Little Bunny is ready to be done with all this trekking up and down the halls, the kids are hungry and I'm starving. I gave Sam's Mom my warmest smile and we got the heck out Dodge.

So I cannot tell you how bad their eyes are or what specific conditions they have. We will find that out tomorrow!

1 comment:

Kelly said...

What an eventful day:) "Wanting" to wear glasses is half the battle. It looks like this "WIN" is in your pocket!