...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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Between Friends...

I wanted to post something significant and telling on this momentous day. It was one year ago, about 10:30 in the morning, that I first had confirmation that our Newest would have Down syndrome. I gave it a good try, commemorating this day, but it definitely lacked the sparkle I was looking for. And then this e-mail arrived from Bits. She always knows what to do on special days.

-----Original Message-----
From: Bits
To: Tracygeee@aol.com
Sent: Thu, Jul 8, 2010 12:16 pm
Subject: My journal entry on July 8, 2009

Hi Trace,

 
I was reading over my old journal the other day, and found this entry on July 8, 2009. I thought I would share it with you today. Thinking of you....


I am on the phone with Trace, her amnio results are in, and they will not tell her the results. Eternity is standing still. A beautiful feather just gently floated past my window. It gently touched the window as if to say "I am here," and then gracefully fell to rest upon the lush lawn. Tracy says, "I know something is wrong Bits". Do I tell her now? Do I tell my beloved friend I have known since the day she told me she was pregnant that I know in my heart it is a boy, and do I dare, oh do I really dare utter the words, "Trace, the baby has Downs". I don't know how I know these things, the same way I knew my best friend would die of cancer before she was ever diagnosed. The same way I knew my Dad would never live to see his first Grandchild born, as my belly swelled with his namesake.


I am on hold....Trace is talking on the other line. I went downstairs and picked up the feather. It has a little flaw, but my heart says to keep it. It is beautiful - soft, glistening, Angel sent. I securely tucked it on a picture frame on the fridge. No one knows its' significance but me. Is she getting the news? I feel like a coward for not telling her what I already know, and sadly, what Trace already knows. I can hear it in her voice. It is as if she is asking me for confirmation of the heart, before the doctor tells her with some stale medical test result. Does Trace know that I know, and that I know she knows? Probably not, I usually keep these things to myself. I have found discussing my premonitions, or instinct - what ever you call them, as dangerous ground. Perhaps I will tell her, I owe her that much. Trace has stuck by me through thick and thin for almost 15 years now, and.....


:: I just hung up with Trace....a baby boy, and yes - he has Down syndrome::


Well, I managed to fail. Just as I was going to spill the beans and tell my dear friend what I already knew to be true, the Doctor told her first. Trace already knew....she has known for a long time. I could see it in her eyes, the little wrinkles of fear peeking through more and more, the comments she gently threw out for me to hear. Regrets, oh how I wish I had said something to her now - My beautiful friend, you will never know the other part of what of what I know to be true. This beautiful baby will be okay, this Heaven sent child will be a crossroads for you...and I know you will choose the road that brings you peace, and such love. Ah, finally, sweet peace for my friend that has endured so very much....been dealt a hand that most never see in their entire life. This child growing inside her will be a teacher, of what I do not know, but I do know he will be a teacher. He is an old soul, and will be able to see it in his eyes.


::Later 10 PM::


I am alone in the house, it is abnormally quiet. I just got a glass of water, and gently brushed the tips of the feather on the fridge.
The kids are at Grandmas. My thoughts are with Trace. I can feel her despair on the wind. I wish she could hold my heart for one moment, and know it will be alright. I wish I had told her what I knew already, and now it is too late. Damn intuition, I call it a curse. Dee Dee claims it is a gift. Dee Dee was the only person I told about Trace having a boy, and that this miracle child would have Downs. Too much information, way before God meant it to be known. I hope you feel my love on the moonbeams tonight, may they warm your soul with comfort Trace. At the very least, you surely know I will always love and support you, and your family. I know this road is going to be difficult, and there is much to deal with emotionally. Perhaps someday I will tell you what I knew already. Hold on tight my friend, this is going to be a bumpy ride, but in the end that little miracle Angel inside you, is going to transform your life. He will be one of your greatest blessings.


Tracy, Tracy....please God, let her and the baby make it through this pregnancy OK. I do worry about her, it was hard enough carrying/delivering the other two when she was younger! I don't know what I would do if something happened to her. Trace has been the holder of my darkest secrets, my greatest fears, the sharer of so many joys, all the ups and downs through the years - my best friend. Goodnight my friend, I hope your dreams bring you some rest and peace....and may you dream of the feather, and all it symbolizes.



In a message dated 7/8/2010 1:22:58 P.M. Pacific Daylight Time,
tracygeee@aol.com writes:
Thank you for this. >Sniffle< Beautiful. We really should talk more often. LOL! We both knew, but I wouldn't say it out loud for fear, and I'm kinda glad you didn't either. The fact that you knew was enough. >Hugs<
You DID tell me the baby would be healthy! I've been preparing a post for this special day. It pales in comparison to your e-mail this morning. Can I post this?
Love, Tracy


-----Original Message-----
From: Bits
To: tracygeee@aol.com
Sent: Thu, Jul 8, 2010 1:27 pm
Subject: Re: My journal entry on July 8, 20


Hi Trace,
Well, I'm glad you are happy I didn't say anything. I have felt shitty for a long time because I didn't. Regardless, all is well now...so no matter. Yep, you can post it!
Love, Bits




In a message dated 7/8/2010 1:30:59 P.M. Pacific Daylight Time, tracygeee@aol.com writes:
Do I want to know what this means?
"My beautiful friend, you will never know the other part of what of what I know to be true."
Is he going to die? Will he have leukemia?
Love, Tracy


No, he is not going to die! The other part was that Will was meant to be just as he is, and that he is going to be a teacher, and that Will would be a turn for you. A turn in the road that would bring you peace, love, joy and growth. Something you have found since having him....like I said...your aura is brilliant yellow these days, and Will's is silver and purple. Angel sent, an old soul. I couldn't tell you at the time when you were mourning the loss of what society deems the "perfect child" that Will was a gift and a blessing. Well, I did - but not in those words. I already knew that Will was perfect, and meant to be with you, and you for him. He chose to come through you....I couldn't tell you at the time you were carrying a gift, not when you had just found out he had Ds. Perhaps I should have....
Love, Bits

So there's the sparkle I was looking for! The sparkle of a deep intimate friendship that I am blessed to call mine! I truly believe that God in His wisdom blessed women with other women. Beautiful women. Women who love me for who I am and not for what they may want me to be. Women who know what I am capable of and expect nothing less. Women who know where I am fragile and protect those places. Women with whom I've both stood at the rim to cheer with, and felt their care of me while I was the one wandering the canyon. My Beloved is my soul mate, the only one for me and quite unlike anyone else in life. But the women in my life love me with something akin to God's love.  Bits is not the only woman to grace my life whom upon occasion, know things before they should. The Inimitable Ms. V and The Lovely Other Mommy also possess that unique gift in different ways. Thank you to all of the beautiful women in my life! You are the sparkle! I could say you are the frosting on the cupcake, the sprinkles in my frozen yogurt, the chocolate chips in the cookie...but in truth you are the substance of the thing, the glue, the batter, the dough, that holds this whole lovely mess together in a way that is at once pleasing to the eye, sweet and savory to the palate, music for the heart and breath for the soul.

Yes indeed, breath for my soul.