...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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Monday, May 3, 2010

Last Night...

Disclaimer: I get brutally graphic at the end of this post. And I cuss throughout. Be warned.

Last night I was grappling with some things. I wrote for over four hours after The Littles went to bed. Then I deleted the whole thing. It was long and rambling and went way too far into details that were not needed. The basic thing is this: I'd had a conversation many, many years ago with the As Yet To Be Dear Daddy. Back then I was moonlighting with a home care agency and I'd been assigned a patient, or rather her whole family, as a home care nurse. The family was a train wreck. Over a 15 year period they bred 7 children with the same profoundly disabling genetic defect. I am more than comfortable saying they BRED children. Why? Because as soon as child after child was born appearing healthy, and then failed to ever progress past the neonate stage, they shipped the baby off to a skilled nursing facility to live out the rest of their lives. And then they got pregnant again. Did they ever get genetic testing or counseling? No. They just kept breeding babies hoping to get lucky. Hoping God would bless them with a healthy one. Never taking the care to find out why their babies were so profoundly unable to develop. They had one "semi-successful" child as Missy's mom put it. Missy wasn't the one. Missy was my patient. By her early teen years she was able to sit. She mostly fed herself with her hands, but was able to use a spoon. She was quite capable of carrying on a conversation, express interest, desires, joy, delight, sorrow and a myriad of other feelings. All from the confines of her hospital bed that she never left, stuffed into the back bedroom of a mansion where she never left her bedroom. Ever. When she occasionally got ill enough, paramedics would be summoned and would wheel her down hallways and through rooms as unfamiliar to her as the planet Mars might have been. Missy loved being in the hospital. Even if she had to get sick to do it. Why? Because her social circle expanded beyond that of her nurse, a CNA and her mother's once a day visits to deliver dinner. I brought in her lunch tray and disposed of the breakfast tray. The CNA who came every morning delivered her breakfast tray and took away the previous night's dinner tray. Missy spent Christmas in the hospital one year. She said it was the best Christmas ever. Because she wasn't stuck in her room. And because when she was in the hospital, her father who refused to walk down the hall of his own home to visit his child in her gilded cage would always come to visit her at least once every hospital stay. That trip to the hospital brought her father's visit early on Christmas morning.

Their "success" story was Merle. He had worked as a cart boy and janitor at Gemco. While I worked there as a teenager many, many years ago. This is partly why this whole thing matters so much. I knew Merle. I got to know Missy. The gaps in the story were filled in by Missy's mother over several months. She was free with the information. She was shameless. She saw nothing wrong in breeding babies and shipping them off to never be seen again. I finally got up the nerve to ask her why they kept having babies. "We wanted a child to love." Really? What about that child down the hall?

It took Merle until he was 22 to graduate from high school. As soon as he graduated he moved as far across the state as he could get and still be within it's borders. The last I heard, Merle was working as a cart boy and janitor at Home Depot, waiting for his parents to die so he could rescue Missy from her confines. Merle did do genetic testing and made the decision not to have children because he was a carrier of the genetic disorder that had decimated his family. What disorder? I never found out. Missy's mother wasn't interested enough to remember. Merle didn't like the way his parents were keeping Missy. He felt she'd be better off with him, or barring that, a nursing home where she'd at least have a room mate to keep her company and sometimes be able to leave her room. Merle loved his sister the way his parents had failed to. In one of the last conversations I'd had with Missy's mom, she said that one day he would get his wish. Despite his dissociation from his parents, they were leaving their entire enormous estate to Missy and Merle with Merle as her guardian and conservator. God bless Missy and Merle.

I'll never know the answers to most of my questions. Missy was two years older than both Merle and I when I became her nurse. How old was she when she was left in her room to entertain herself? Was Merle their last because he seemed "normal?" Why wasn't Missy shipped off to a nursing home like her five other siblings when it was clear she'd never crawl, sit, walk? And if she knew how to use a spoon, why wasn't she ever taught to use a fork? And the girl had thoughts! She had desires and likes and dislikes. The two of us kept up a steady conversation with every visit. Would she have developed beyond her idyllic and juvenile mentality if she'd had some exposure to other people? Peers? Some stimulation besides her television? Did her mother respond to her when she cried? I don't know.

But I do know why the conversation, Why did they keep having children? is plaguing me. One of my best friends has four wonderful children who all have significant health problems. People at work used to say behind her back, "If her kids are all so unhealthy, why on Earth did she keep having more?" You know, our coworkers. Fellow nurses. Employed in the profession of caring. Yeah - not so much. I've only ever met one group of people who can in general rival, in fact dwarf, the bitchiness of 'churchies.' These were the professional bitches. RN's. Fellow RNs, the ones who are supposed to have your back, are the most vicious when there is blood in the water. And recently someone said it behind my back. But I heard it. It was actually behind their own backs, because they hadn't seen me come into the room for the Middle Little's IEP meeting. The school nurse and My Middle Little's vice principal had their backs to me. The school 'nurse' said, "His sister is autistic too at another school and the baby is Down syndrome. I don't know why their mother keeps getting pregnant." Yep. The nurse. The giver of care and provider of compassion. But her tone was anything but caring and compassionate. I never did like or trust either one of them, even before this.

What came next was also surprising. I could have cleared my throat to let them know that I was there, and more importantly, that I'd heard what they'd said. But I didn't. I backed out the way I'd come. I stood in the hall for a moment and then came breezing in making noise. It was chickenshit of me, but there it is. I'm too danged tired to take on every battle. And what would it achieve? Would their narrow minds be broadened? Nope. Would their careless remarks be self governed the next time? Nope. Would they adopt the idea of 'Judge not?' Nope.

I'd tried to defend my friend all those years ago. All four of her children were planned, wanted, loved, cared for. All four were born and healthy before the first one started having problems. It was fruitless. And now we have two Littles on the Spectrum and one with a chromosomal abnormality. Yee gads! Seriously, what had we been thinking??? I could have spoken up and said that The Middle Little was almost five before he'd been diagnosed as autistic, and that the Oldest Little wasn't diagnosed until well after the Middle Little. The truth of the matter was that we hadn't known they'd have autism before the months of fertility treatment. And if we had known, if we'd had that crystal ball and had knowledge aforehand, surely we would also have known what beautiful, talented, happy, vivacious and awesome children they would be. What incredible adults they will become. How could we have not had them? Okay, that's not the point. We didn't know. That was the lame point that is neither here nor there. And as for the remark that I keep getting pregnant...I could have said I have a long history of being infertile. I'm not supposed to be able to get pregnant. And that brings me to Jack, our genetic defect with his mutant genes. Don't even start me on her saying that he "is Down syndrome." Yes, we did know through the wonders of modern science that he would have Down syndrome and may well likely have some disabilities. But hey, having your tiny little fetal body sucked out of your mother's womb in bloody pieces would have been pretty damned disabling. Dontchya think?

So I guess this is why I needed to write this out. I needed to get pissed off again, because I simply cannot tolerate myself when I am weak and simpering. My name means "Warrior Woman." It's Latin. The IEP got canceled that day. It's now at the end of the month. Maybe I'll go Warrior Woman on that nurse. I have doubts that she is in fact a nurse. She has no idea what each of The Middle Little's meds are for or how they function to make his little world a good one. She'd have a coronary if she ever bothered to research them and found out that he takes some of them in phenomenally high doses.

I will always have a sick heart when I think of Missy and Merle, and their five infant siblings that went to 'live' and die in sterile institutions. I can only pray that they were held, cuddled, loved by someone in their short lives. There is so much injustice and filth visited upon our smallest and most vulnerable. I am only one Mother. I can only do so much. Sometimes I will need to walk softly and carry a big stick. But I will do it with a mighty roar if need be. I may even foam at the mouth and cause a wind so fierce that the jowls of the offender flap in it's wake. We'll just have see.

Thank you for listening. It's been cathartic. Now I am going to pick up my sleeping baby and hold his warm little self to my chest and kiss his temple. As he always does when I pick him up from a sound sleep, he will stretch his little arms over his head and stick his little diapered butt out while I suck in his perfection and cradle in my arms his wiggly little self. He is magic!
I love that belly...
...and those feet are delicious!

3 comments:

Jenee said...

Wow!

Great post, you wrote it so well!

As for that ignorant "nurse", ARGH! I pray that between now and that next IEP God gives you the words to change that women from the inside out. If He doesn't promise me that you will use your own words and unleash them onto her ignorance. Being a mother comes with a Mother Bear instinct that is ruthless. For me it got MUCH stronger with the birth of Kaitlyn. I really believe part of God giving us these beautiful babies was Him selecting us to advocate for our children and all children with disabilities.

At the very least take Jack with you to the IEP, I have seen people change, grumpy, ignorant people CHANGE, at the sight and smile of dear Kaitlyn.

Thanks for your blog! And you go girl!

Denise said...

Wow!! What a story. Actually stories, I guess. Merle and Missy's is so sad!! These parents have no idea what they are missing. And as for the nurse and VP...idiots!! I wish you would have made them uncomfortable in that moment...but easy for me to say from the comfort of my own home. I probably would have done the same in that instant. We just have to remember that we are the lucky ones and unfortunately, everyone else in the world just doesn't get it and I guess we can't worry about it. You wrote this post very nicely and I hope that it truly was very cathartic!!

Tracy said...

It's funny really that I chose the coward's way out. I just didn't have the fight in me that day. I seriously doubt that anyone who knows me would ever say I am timid or weak. Quite the opposite in fact. I am much more prone to jump on the band wagon and fight to the teeth. But, you know, you just can't fight stupid, and maybe for once my brain registered the facts and took over before my mouth got me into the fray. I'm sure there will be another time that they won't see me coming, and when that time comes, the spoils might be more important than a petty little witch-fest!