...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 23, 2010

Chicken Soup for the Soul Children With Special Needs

Great Grandma Ross gave me this particular book a few years before The Middle was actually diagnosed as having autism. While I appreciated it at the time, and told her so, I have never read it. It's kicked around this house, from pillar to post, so to speak, without ever having it's cover parted. Until tonight. I'd dug out a new James Patterson book I'd bought at Costco and hadn't yet read, and got all comfy on the couch with my coffee, and realized it was not the new book after all. And in trying and failing to find the newer James Patterson, I found the Chicken Soup book instead. I blew off the dust and I started to read.

And before I'd even gotten through the acknowledgments, before I'd read word one of what are sure to be heart rending stories, I was weeping. Yep. Weeping. Kinda like I am right now. Quiet but deep weeping. I guess because I own it now. Special Needs Children. It's my life now. My reality. When The Middle was diagnosed with the first few acronyms, The Girlie had already collected a few of her own. I won't go into the personal hell that I lived in when she was first tagged as learning disabled, that's a story for another time; but when The Middle was finally formally diagnosed with autism, it was at long last a place to start from. A place to begin to make reparations, to learn different methods to teach, to try to rewire the thought processes that had gotten jacked up in his blue prints. It was a filthy and rough worn combat boot right to my teeth to read it in black and white, but still, it was a place to jump from here to there. A place to start. A place to begin. A place from which to issue the primordial bloodied battle scream and to take back my son from his own private hell.

When The Girlie was later diagnosed as also being on the spectrum, it wasn't nearly as difficult, but still hard. She didn't have the behavioral issues that made day to day life a navigation through murky treacherous waters like The Middle. And as The Middle was better able to control himself and the raging and the melt downs and the despair started to decrease a bit, and then more so, life got better for everyone. And it continues to get better. There is the quite reasonable expectation that both of The Olders, with therapies and exercises and diligence to cause and effect reasoning and the teaching of life skills, along with plenty of love, despite their diagnosis, will grow into responsible, productive, happy, capable and independent individuals. There is something, many things, to be done to ensure their success and happiness, both now and in their futures.

And then came Jack. Jack's Down syndrome isn't what I was hurting over as I finally opened this book. It was thoughts of The Middle's daily struggles that had my grief and fears spilling out in liquid down my cheeks. But Jack is the one who tipped me over the edge. I don't know that this makes any sense. I can only say that my days of grieving over Jack having Down syndrome are done. Finished. He's just fine. (Don't quote me on that ~ I may have to revisit this idea.)

Let me try to explain it this way: Jack has Down syndrome. He always has. He always will. Nothing I can do, or have failed to do, can influence this fact. With Jack, everything I do with him is going to be beneficial. Every therapy. Every experience. Every hug, kiss and snuggle. It's all up from here. So, I'm kinda off the hook with him. As long as I do my job and do it well, he will be the best that he can be. My toughest job with him will be to outlive him. I cannot die while he lives. I have to be there for him, in how ever much or little he needs me to be. When he's taken his final breath, I can die. And yes, I am quite sure that a broken heart can and will kill me. When I'm 107.

And there's still the huge question with The Middle. Have I/am I doing enough? Is he getting what he needs? Am I/have I been diligent enough? Provided enough? Loved him enough? Played with him enough? Disciplined him enough? Taught him enough? Hugged him enough? Do I/ have I said yes often enough? Held firm to no often enough? For all the stages of his life so far, these are the questions that never go away. And there's no measuring stick at the end of each stage to show me if I've come up short with him. There's no roll of the dice where you pass GO! and collect $200.00. There's no litmus test to say, yeah, we're good. Advance to the next stage of growth and development. There's also no Uh-Oh...better change this. This thing right here. No, not that, THIS! Jack progresses. Not in leaps and bounds, but it's visible progress. With The Middle, all I can cling to is that while he's mastered so few of his own behaviors, while he still struggles daily, sometimes hourly and even minute to minute to reign his own little self in, he is progressing. And at the end of the day, no matter if it's been a great day or a pretty crappy one for the records, we come together at the end for hugs. Snuggles. Bedtime tuck-ins. Sips of water. Just one more kisses. And it's not so much that the questions are still out there. It's more that the answers are still out there. But I need some litmus now. Before it's too late. Before I screw him up. Because~I~Don't~Know. Too many questions. Too many variables. Not enough certainties. Zero answers.

So I read one story in the book so far. Ironically, about a girl with Down syndrome. I will go back and read more. I will. And maybe I'll discover the answer to the question hidden in the wording: Why is it called special when everything about it is so damned hurtful? Because that's where I am right now, sobbing over the keyboard, feeling like the world is on my shoulders to get it right the first time, for them, especially The Middle.

And I am no closer to knowing why Jack having Down syndrome makes The Middle having autism so tragic. He had it before Jack was ever a dream. Maybe it's the juxtaposition. Like I said before...I don't know.


Christina said...

I have that book, I love it!

Holly W said...

I feel that way about Brooke, if I'm doing enough...it's always on my mind...
and though I have no experience with autism (and please let me know if I'm completely wrong here and have no clue what I'm saying)I often say to Eric that in the realm of special needs we hit the jackpot with DS. Because like you said...she will progress, she will do everything, the therapy will help....
I've always imagines autism to be scary..it's such a broad spectrum, how would I know what to do?
And Tracy, you're doing a wonderful job...you love them, you give them everything they need...and remember, not every single minute of every day can be therapy...(that's what I tell myself when I worry anyway!)

Tracy said...

I think you have it completely right! After their Dad and I finally had some real life research on Ds under our belts and The Middle was having a particularly baaaad week, I looked at their Dad and said, while patting Jack in My Belly, "This is going to be the easy kid!"

Jen Currier said...

Tracy, I love this post! You had me in tears too. And the fact that you're going to outlive Jack just tipped the floods. Because me too. Me too. I am going to outlive Elijah too and maybe one day they won't need us to. It's completely possible that they won't need us to, but until then, God and I have a deal.