...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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Sunday, November 14, 2010

Get It In Writing!

This is a long post. Long. And I promise there is a photo at the end. Please don't skip ahead or you'll ruin my punch line!

When we were expecting The Girlie, The Beloved started talking about doing another thing that he'd always wanted to do. He wanted a tattoo. But I thought it was just talk. I get the baby, he gets a tattoo. He never said what he actually wanted this ink "art" to be, and he never actually said that he was going to do it. Ever. Or now. Today.

When he called and said he'd be about an hour late, I really thought nothing of it. It wasn't an uncommon event. The fact that he gave me a heads to the delay of his arrival time was enough. And when he got home I was in the kitchen making dinner. And there was a look in his eye. Something in his expression. An elevation to his brow line. A hint of a snicker to his lips. A glint of mischief in his eyes. And then I noticed his posture. All of this noted in less than two seconds flat, while he poked his head into the kitchen. And he knew that I knew. "What?" he asked. I glared at him. I'd show him what! "Just let me see it," I said. "See what?" And I glared at him again. I was pissed. I did not want him to get a tattoo. I hated that he would mark his body like that. That he would mar it. With something so entirely permanent. And it didn't help that with every word out of my mouth, every steely eyed glare, every line of my face screaming NO! the gleeful jubilation in his eyes, in his entire being, just grew to enormity. And the best, for him, was yet to come. I had yet to see just what bit of "artwork" he'd chosen to forever violate his body with.

At first glance, My Beloved looks every bit the big scary biker. He wears Levi's. He wears motorcycle tee-shirts unless we're out to dinner or some other function. He wears biker boots. He has a mustache. And yes, he really does ride a real motor cycle. (Harley!) I like his thick curly hair to be just touching his shoulders, but for the last decade he's liked it trim and above his collar. And he's a big guy. My friend Ann still lives in terror of him until he jokes her into fits of laughter. My lifelong friend from school days still thinks the myriad of scars on his arms are from gang fights. Really? For the record, white guys don't get into gang fights! At second glance, he has an easy smile, a friendly jovial nature, and eyes bright with wit and laughter. He's a great guy. A good man. But you don't want him angry with you. He's intolerant of ignorance and doesn't suffer fools. Or ex-boyfriends. Or actors. Liberals. Arrogance. Thieves. Liars. Druggies. Cheats. People who ridicule or belittle others. Especially children. So I didn't expect him to commemorate The Girlie's growing life with hearts, flowers and unicorns. What he had chosen just made me sad. Sad. He won't let me tell you what it is, but I blame our Little's love of the macabre, their embracing of bones, skulls, ghosts, ghouls, plastic rats, spiders and all things Halloween on his tattoos!

By the time The Pod was baking, it was a forgone conclusion that he'd get another tat. I get the baby, he gets inked. And he told me this time that he was getting it done. When I saw it, I thought it was fitting for him, and at least this hideously ugly bit of ink was to celebrate a boy, not my delicate little girl. While I was no more fond of this tattoo, it was his body after all, and once he had that other one, why not this one? Why not just plaster them all over his entire body? Why not get "sleeves" or some on his neck and face? Why not? WHY NOT? Why not just shave his head and tattoo his scalp? He'd already defiled himself, so why not go all out? I didn't like it at all, but he was happy with it.

It was no surprise that with the news of Hannah's pregnancy, The Dear Daddy started thinking about another design. I will forever be grateful that time and finances were prohibitive, and that he wasn't able to get her tattoo done before we lost her. While that tragedy remains the single most binding together event of our journey with each other, strangely even surpassing our births, seeing her tattoo every day would just be painful. Hurtful. I hope and pray to my God in Heaven that our bond, our ties, our tethers to each other, do not require any more strengthening by the very particular and singular method of profound loss.

And here is where Jack and Hannah's lives seem to cross yet again. The design he'd had in mind for Hannah was to be forever put away, unfulfilled, never to be. Because Hannah was to be our last. There would be no others after her. And this is when I realized that The Beloved's ink was something more to him than a tattoo. It was personal. It was a living breathing thing. Fluid. It was so much more than expression of self through body art. I get the baby, he gets inked. And when we lost Hannah, The Beloved put away the design he'd made out of love for her. He tucked it away, far, far away, from his heart. And then Jack announced the fact of his being. And then the news of his diagnosis. Since Jack's pregnancy was so very precarious and tentative, we wanted to wait until his actual live birth to set his own mark on the canvas that had become of My Beloved's skin. Jack's surprise pregnancy, his diagnosis of Down syndrome, his miraculous birth, all set the stage for what was to be Hannah's design, to be just so fitting, so perfect for Jack. If I were allowed to tell you what his/her/their tattoo is, there would be a collective swelling, a chorus, one voice of "Aaaaaawwwwwww" echoing across the world wide web. It is just so succinct.

As we enter the home stretch of Jack's first year, The Love of My Life has stopped waiting for a shoe to drop and finally got his tattoo. I went with him this time. Jack came too and was the perfect little play date for the artist's seven month old darling little boy, and some mommy-chat time for me. I marvelled at his son's ability to sit up and crawl on his own, and his Mommy was bowled over that Jack says "Mama" and makes raspberries with perfect conversational punctuation! And instead of hating this tattoo as I used to The Girlie's, just accepting what would be The Pod's, I actually helped with the design and placement of this one. And it was good! It was right! And it is entirely personal and beautiful. No, I'm not going to say special. Ewwwwwwww!

While I was at it, working on this third and final of The Littles' tattoos, I started playing around with another design. I discovered just how entirely personal and intimate a tattoo can be. My goal was to incorporate all of Our Littles into one design. It wouldn't be obvious to the casual observer, but it would be meaningful. I had an idea. Then I had another entirely different idea. And if I could blend the two designs, it would be perfect. But Hannah, dear, dear sweet Hannah, thoughts of her kept hovering, lingering, wanting to be heard. Remembered. Included. And I figured out how to give voice to her as well. And it's good that I did, because this tattoo was keeping me awake at night. Evenings for two weeks were spent at the computer trying out different fonts, arranging and rearranging, changing, sometimes discarding an idea entirely. I was dreaming about it. Do you ever have those not-deep-enough sleeps before a big event, good or bad, where the same monotonous and endless dream keeps playing back over and over in your head on an endless loop and you never quite find a solution to the problem before you start the dream again? It was like that. It went on and on. For days. And days. And on the final day, the very last afternoon before this tattoo would become permanent in ink that evening, I figured out exactly what I was looking for. It was finally just right and I could feel it. I showed The Beloved and he said that he liked it, really liked it...but could it be done? That was the big question. But the tattoo artist said Yes, we can do that! And here it is...



Yes. That is my arm. My right arm. Where I can easily fold it over my heart. What started out as a desire to have something small, special, intimate and personal to me, for me, the simple word Beautiful in tiny, discreet blue letters near my wrist, bloomed into this. Go big or go home, right? Yeah, I clearly had what The Beloved lovingly calls a Clark W. Griswold moment. The immediate allusion to Jack is obvious My Beautiful Miracle T-21, but the underlying pink lettering refers to every one else. It's supposed to be hidden a little and not jump out at you. It's supposed to be noticed while reading the blue lettering, as in "Oh, there's something else here...underneath." In case it truly is as obscure as I was trying for, or if it doesn't photograph well, this is what it says:

Faith. Trust. Pixie Dust.

And this picture is right after I'd gotten it done, so it's still quite livid. As in LIVID. And painful. Stingy. So the pink will fade some. And it is much clearer in person...the blue is not blurry. Eventually (in 3 weeks) I'll add a spray of Pixie Dust over the entire thing, and much later (When I've forgotten about the pain of this 2-step torture) a little Tinker Bell may also reside above and to the left of the F. We'll see. Cuz this really hurt! As in it really %^$&#*@ hurt, hurt!

Faith for The Girlie, because she has so much of it. Faith in her Heavenly Father. Faith in her earthly Father. Faith in her baby brother. Faith in goodness and the belief that people will show their goodness if given the chance, maybe encouraged a little. Faith in hope, eternal hope. And for some reason, Faith in me.

Trust for The Middle Little. Because so much of his little life is built on trust. Trust in the doctors. Trust in those who guide him at school and in our home. Trust that he will grow from a good little boy into a good man. I sometimes just have to Trust that what I do with him is right, and even more importantly, not wrong. Trust that while The Dear Daddy's methods are often very different from mine, that there is always a bigger picture that he's aiming for, often one that I don't see until he shows it to me. The Middle Little doesn't yet have the capacity to understand God. To him, God is this giant, amazing, all powerful entity that you can Trust to make everything alright, but it's still best if you just leave Him to it and not try to get His attention too often. And, again, for some reason, he has an amazing Trust in me. Me. A woman and mother who once fell to her knees in utter despair, here in this room where I type my thoughts, siphoning my soul to the world at large, and angrily screamed at God, demanding that He show me how to mother this boy. Yes, Trust is the right word for him.

Pixie Dust is for Hannah. A new version of Return To Neverland was released in November 2007. The month and year that Hannah would have been in our arms if she'd made it to term. One of the songs on the sound track, "I'll Try" poked holes into my heart and let some of the grief spill out. It spoke volumes to me, for so, so many reasons. Try to go on. Try not to cry. Try to keep it all together while my heart was so broken. Try to have Faith. Try to have Trust. Try to believe in something, even if it was only Pixie Dust. And like Pixie Dust, Hannah will always be elusive and magical, something felt but not seen, real and intangible at the same time. All it takes is a little Faith, and Trust, and Pixie Dust.

And there you have it. In writing. I have marked my body. Marred it. Defiled it. Forever violated it. Entirely permanently.

And I love it!

I started to title this post "Tattooed White Trash," because my Dear Daughter hates the fact that I have done this to myself. She'll get over it. Maybe when she's 45 and wants to forever commemorate some miraculous event for herself. Like the birth of three babies that medical science said were never meant to be. Or in Jack's case, shouldn't be. Until then, Que sera, sera.

Our Buddy Walk was today. I will post about that later...for now I'm going to go cry in the bathroom, because this post was emotionally charged for me, and very difficult to write. Ciao!

2 comments:

txkerri said...

Wow, wow, wow!
I love your tattoo. How very special. You now truly carry your heart on your "sleeve" :-)

Holly W said...

beautiful...and so meaningful..