...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, October 26, 2010

Buddy Walk 2010

Why is it that when Jax crashes his sleepy head into my mouth that he remains asleep, totally unfazed, while sharp pain stabs through my lips and a completely different pain simultaneously ricochets through my front teeth all the way into the back of my brain?

And why is it that I never see that big giant head aiming for my lips? I would seriously prefer that he pull my hair and bite my nose again! Or puke in my mouth or crap on my leg again. Although, to date, Jax is the only one of My Littles who has yet to puke in my mouth. Give him time. He'll get around to it.

Today I got a call from the tire department at Wal-mart. It was my new soon to be good friend Liz. I approached Liz about a month ago about perhaps obtaining a donation for our Buddy Walk. She let me know that all of their donation budget had already been spent for the year, but that she would submit the letter Jax wrote for next year's budget. And then she told me her very personal story with a special needs child. It broke my heart, but it is not for me to share. We were strangers to each other before that afternoon, and I am quite certain that I've seen her while shopping at least 52,000 times. She's seen me as well, I'm sure. Until that afternoon, neither of us had any reason to give notice to the other.

She was amazingly interested in my Jack-Snack, went so far as to tell any of the associates who approached her during our long chat how old he is, his name, his diagnosis, and asked "Isn't he just the the cutest?" Clearly, her associates love her and know her story. The instant she uttered the words Down syndrome, every person she told softened toward Jack, moved a little closer, touched him...melted a little.

During our conversation, Liz said that while she couldn't give us a cash donation, she was quite certain that she could provide a high dollar item to give away if I'd like to organize a fund raiser. I explained about our situation with three special needs kids in the home and therapies coming out of our ears, and she said that she'd speak to some of her associates to see if they might be able to organize a fund raiser to benefit Jack's Buddy Walk goal! Awesome!

I spoke to Liz again two weeks ago when she called about the DSALA tax ID number. Of course she asked about Jack. Knowing her story, knowing how a simple benign procedure had changed all of their lives indelibly and forever, I confided that I was terrified of having Jack's wiener repaired and asked her to pray for him. She prayed a beautiful prayer not only for Jack, but for me as well, on the spot!

Today when I got the call from Liz I was instantly excited because I thought it must be related to the Buddy Walk. I've been feeling a little blue that more of my family and friends haven't rallied around our efforts to contribute, but in all honesty, I can say truthfully that if the shoe were on the other foot just now, we wouldn't have the money to donate to someones fund raiser either. And I have to remind myself that The Buddy Walk is just two days after Jack's first birthday and I think people would rather spend the money on him, rather than for him. The first thing Liz asked me was about how Jack's doctor visit went. I wasn't surprised that she remembered. She's been a kindred spirit ever since she shared her beautiful story with me and the two of us stood weeping in the customer service area at her store.

I wasn't prepared for the even better topic that Liz wanted to talk about! She and her husband have just recently adopted a three month old baby boy named Nathan. Liz wanted to know if I'd be interested in getting our boys together for a play date! A Play Date, people! Oh yippee skippee! This simple suggestion that we have a play date, an occurrence that happens in households all over the world every single day just had me giddy with delight! I would be thrilled to get our boys together to become buddies and I very happily told her so, along with, "Oh Liz! Thank you for that! It means so much to me!"

And the next news was just the cherry on the sundae...she'd badgered their corporate office for a cash donation and she would be honored to present a check to us for $250.00 if Jack and I would be so kind as to come to the team meeting at 9:30 am Friday morning! She said it's only $250.00 and I said "Are you kidding me? It's TWO HUNDRED AND FIFTY DOLLARS!!!" So we will firm up details for our boys' play date on Friday! I look forward to getting to know Liz and Nathan, and I hung up the phone with the biggest smile on my face! Yippee skippee!

1 comment:

Becca said...

Wow, what a great story and a wonderful new friend!