...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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Tuesday, November 9, 2010

New Tooth & Optho

Having worked a 12 hour shift the night before, I just barely had time enough to scoop Willie up and toss him in the car and race down to the valley for his much awaited opthomology appointment. And we waited. And we waited. The waiting room was packed and and we waited some more. For hours. There was a young Mom with a baby stroller all closed up tight like you do when there's a newborn inside. Her eyes were closed and she was wobbling on her feet, swaying to and fro, ready to fall over. From my spot in the hallway, I kept an eye on her and on the waiting room. Finally, a seat opened up. I woke her up and she jumped out of her skin! She was asleep on on her feet. I told her about the seat and she went over and promptly collapsed into it with her arms fold protectively over the opening to the stroller hoods. Poor thing.

Another Mom asked me a question about Willie's bracelet on his foot. She hadn't gotten one. Did that mean her son Mason wasn't registered? Is that why they hadn't been called? Our appointment was for 10:45, theirs was at 9:00...neither of us had been called at noon. She went off to find out about getting Mason's bracelet and I promised to save her "spot" in the hallway. She came back 30 minutes later with Mason proudly wearing a bracelet. We wondered if that meant that they were now behind every one else, even though their appointment was for over three hours ago. We wound up visiting and discussing other long waiting room adventures, Down syndrome, kid's health in general, etc. Another Mom was there with her 9 month old baby. Her 12 year old child had Prater-Willis syndrome, and having heard me mention Regional Center a few times, she joined in the discussion. They hadn't gotten much in the way of services, and she had some concerns about her new baby's development. So, maybe this is why I was here so long...both of these ladies lived within 20 miles of me. The Mom with the new baby and the 12 year old needed help and wasn't getting any. I was able to fill her on on what she should be getting, and the best way to get her baby evaluated. At the end of our discussion, our names were called. Mason and his Mom wound up being called right after us. We walked out to the parking lot together and exchanged phone numbers!

Willie's eyes were dilated and he slept through the entire exam. The doctor, as always, had an intern with him and was very thorough and very informative. He answered all of my questions without being general and without treating me like a nuisance. He said DS kids and DS babies several times, but not in a dismissive way. Then it was time to wake Willie up so the doc could evaluate the nystagmus.

All in all, he said Willie's optic nerves are small, but not alarmingly so. The optic disk or cup is not hypoplastic. He is near sighted and will need glasses eventually. See you in 6 months unless you think he should be seen sooner? Well yes, I do think he should be seen sooner. If he's going to need glasses, I'd prefer to get them sooner, rather than later. He's already got disadvantages, let's ease some of those in a more timely fashion rather than wait. Okay then, see you in four months, and yes I will write a letter to your doctor to take with you today.

An hour later we were leaving. The Other Mommy pulled me out of hot water once again and raced to my house to see the older kids get off their buses. We got home at 3pm. The Dear Daddy got home at 3:15, and Beth arrived for Willie's OT at 4. She left at 5 and at 5:05, I was in bed for a much needed nap! At 6:30 I hobbled out of the bedroom, down the hall, calling The Beloved's name, crying, "Help me leg cramps bad really bad both legs really really really bad." It happens every time I'm up for a 24 hour stretch. Having gotten up with The Littles Monday morning at 6, I was about 35 hours in when I got my first sleep! The Beloved massaged, The Girlie ran for the "small square white bottle on my desk" of Hyland's leg cramp tablets with quinine, The Middle danced around in a panic because I was clearly dying, The Girlie came back equally panicked "Mom! There's only two!" Think fast. "In my work back. Top zipper. Get more. Now!" Sent The Middle for water. The Beloved popped the two tablets we had into my mouth without water. The Girlie returned with the bottle. Fumbled. Dropped it. I'm still crying and moaning like the tormented woman I was. The Middle had returned with the water but was still deathly pale, because I was, after all, to him, dying. The Beloved retrieved the fallen bottle that got kicked under the couch in the scuffle, but that meant he had to stop rubbing my legs. The Girlie, crying. "Mommy. I'm sorry." She never calls me Mommy. Just Mom. The Beloved, "Every one calm down, it's all okay. We'll fix this!" The Middle not convinced. The tablets in my mouth. The water. The rubbing. And three minutes later all was calm. Fine. Pain free. Dang! It was me that felt like rabid dogs were ripping the muscles off my legs, but The Littles needed comforting and circled around for hugs and cuddles. I went to hug The Beloved for saving my life!

And after all this, we didn't even get any cute little glasses for Willie. Dang it! He did sprout that bottom tooth today though! It looks like a normally shaped tooth, right next to the spikey sharp one, and about 3/4 of the tooth surface has erupted. He's going to look funny with a normal tooth and a sharp spike right in the bottom middle of his mouth, but I can't wait to see his smile when they're both in!

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