So...what do you think of the new look??!! Shannon, from Gabi's World came to my rescue and made me this gorgeous blog! I LOVE it, it is everything I was hoping for and more. I cant say THANK YOU enough, Shannon. Wooohooo!
As a boy of fourteen, Joseph Ratzinger had a cousin who had been born with Down's Syndrome, only a bit younger than himself. In 1941, German state "therapists" came to the boy's house and probably informed the parents of the government regulation that prohibited mentally handicapped children from remaining in their parents' home. In spite of the family's pleas, the representatives of the Nazi state took the child away. The Ratzinger family never saw him again. Later the family learned that he had "died," most likely murdered, for being merely "undesirable," a blemish in the race, and a drain on the productivity of the nation. This was Joseph Ratzinger's first experience of a murderous philosophy that asserts that some people are disposable.
Many people are expecting Pope Benedict XVI to speak out in defense of human life and against abortion during his visit to the United States next week. What few people realize, however, is that the pope knows first hand what happens when a society refuses to defend the most defenseless of its citizens.
Pope Benedict XV=Joseph Ratzinger, the cousin of a child with Down syndrome who was killed by the Nazi's simply for being born "different".
In the next few weeks, I intend to write about Hademar, the institution where children with disabilities were sent by the Nazis. I told a story about Hademar at a Teacher's conference once, and there wasnt a dry eye in the house. The story is sobering, painful, and real. It is comforting, in a way, to know that even the Pope knows just HOW real eugenics is.
http://christiannewswire.com/news/83046235.html
I wish the world could see you as I see you
Wish they knew the joys you've brought to me
So many people quick to judge us
and see you as someone who shouldnt be
They tell me that your life is not worth living
if they were I, they would have never let you live
They cannot know the thing it is that we know
They will never know how much you have to give
They talk a lot of sacrifice and burden
They imagine that your being is our loss
How can they know you saved me when you found
me
when I never even knew that I was lost.
True enough, my world has changed forever
nothing in it is as it was so long ago
Your entry in our world has changed so many things
but none so much as they have changed my soul.
Why do we live our lives at all then
if there is some race that we must finish first
Why do we deny ourselves it all then
we drown so that we may quench our thirst
You taught me to stop and smell the tulips
they are different than the roses, this is true
their scent is in my every pore now
I never would have known them without you
To all the many people who would not choose you
who think your life is somehow tragedy
I say you have outlived them and outloved them
I am grateful God chose you just for me
You love your life and everyone thats in it
you shine your light without knowing that you do
Illuminate the darkness with your sparkle
my child, my love, my life, thank God for you.
my middle child is a son, 12 years old and almost as tall as me. He is sometimes gruff and he is always of few words. Honor roll, brilliant mind, he gathers his words and only doles them out when necessary. He is a lot like his father, quiet and mercurial. But he is a lot like me, too. He has a tender heart and is easily hurt. He just doesnt show it much. But this boy loves SO fully. He is a favorite with little kids, he has been "MY Jesse" to many a toddler. He loves new babies, and will sit and stroke their faces and hands for as long as their mothers will let him hold them. He is very tender-hearted and has one of the gentlest spirits I have ever known in a tough guy. He is the kid that used to climb in the crib with his baby sister if she cried, carry her everywhere, and dote on her as though she was the best thing in the entire world.
As they have grown a little, their bond has been tested a bit. Like all siblings, they fight sometimes. She can be spoiled, so can he. They both want the tv when they want it, and he really really dislikes her best friend (Who is not very nice to him at all) The last year or so their bond has been stretched, they are both growing up, both past the huggy stage really. Maybe it isnt COOL to be cuddly anymore?
I was perched in my window today, watching them wait for the bus. Usually they will shoot a few hoops or climb snowbanks or throw rocks across the street. Lately, they have sort of tried to find their respective SPOT with one another, they seem to have a mutual respect for being "big". Ciarra is in a wonderful mood today, and has been quite cheerful lately in general. I can usually not hear them when they wait for the bus, it is a fair ways to the busstop. Jesse came ambling down the driveway, she was already there. He put down his laptop and backpack and walked towards her. Sometimes they will spar a little in the morning, grumbling and bossy, and one will complain about the other DOING something or another. It is never more than a sort of playacting, though, like they are SUPPOSED to get on each others nerves. I saw him walk towards her, stand beside her, then reach out an arm and lay it across her shoulders. Then crouch down, lean in, and kiss her cheek. I dont have a clue what precipitated this gesture, but it was sweet to watch. many times, Ciarra will resent him trying to cuddle with her, she is BIG and she isnt a baby. I wasnt sure what was going on, if maybe she was sad and he was comforting her. She leaned back, looked up at him, then threw both arms around his waist and hugged him, hard. They stood looking at each other for a second, and then almost seemed to realize they were being LOVEY, and, well, the bus WAS coming. They stepped back, adjusted their backpacks, and the moment was gone. But I saw it, I recorded it in my mommy file, and I treasured it.
As they grow up, the moments in which they can just LOVE without worrying what the world thinks will be fewer and farther between. He may not climb into bed with her much these days, but if she is sick or sad, I can count on him being there for her. Their bond is so natural, and yet it isnt sticky sweet, he doesnt feel any sense of "burden" towards her, shes just his pesky little sister and only sometimes still CUTE. Generally, she is bossy, opinionated, and too independant to stand still for his hugs. I am happy to see he still gives them, and that she still accepts them, sometimes.
The bus came down over the hill, and I saw them turn. He lets her get on first and I remember the days he had to boost her up the stairs. She is tall, strong, and confidant now, and the big brother role is changing. But the love is still there, and growing every day.
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I sometimes watch her as though I am a stranger, and try to view her world as SHE views it. When the bus arrived today, she looked up into the window, saw her best friend, and squealed out loud, waving and running to the bus. I heard the bus driver say "Good morning, sunshine!" and I smiled to myself. We should ALL be greeted this way every day, dont you think? Ciarra's life is joyful. I could ask for NOTHING more.
Ciarra and I played hostess to GiGi the Travelling Poodle for a month or so recently. (IT was supposed to be MUCH shorter a visit, but we were dealing with sickies, so GiGi's owners let her stay awhile.)
We went bowling, visited Paul Bunyan, tubing at Hermon Mountain ski area, visited Joshua Chamberlain (Civil War hero), took GiGi to Pajama Day with Ciarra's class, and went to Stephen King's house. (he wasnt home.)
GiGi is the brainchild of a beautiful family we know through another DS board we frequent. McKenna is GiGi's "Mom" and Darah is her beautiful inspiration. It has been a pleasure to be a part of GiGi's travels to bring awareness of Down syndrome to the world, one family at a time. We hope GiGi stays warm on her next visit to a precious little boy named Austin, and on all of her journeys to come. 
I have been asked by several different people HOW we got Ciarra reading. I thought it might be nice to have things in one place, to refer to as needed. So here goes!!
Nouns & Sounds was one of the earliest CD Rom games we used. It is a FANTASTIC and easily modified program for teaching kids about the world around them. It has the child match the SOUND of something to the onject that makes the sound. You can have a very few objects to choose from, or LOTS of different choices. This program was hands down hugely responsible for teaching Ciarra the NAMES of things.
you can request a demo CD to see if you like it.
STORY BOXES make reading interactive. An old shoebox with various items that are illustarted in the story can help make the story come alive for visual learners:
A story box is a way for young children to experience a story. When selecting a story for you child, choose one that is simple and tells about familiar objects and concepts. Collect corresponding items in a box or bag. As you read the story to your child, allow him/her to hold the item. Examples:
Chicka, Chicka, Boom, Boom, by Bill Martin Jr. and John Archambault, National Braille Press, Simon & Schuster, (Print/Braille)
Contents Magnetic Alphabet, Drum, Coconut
Jennifer's Messes, by Suzette Wright, American Printing House for the Blind.
Contents: Cheerios, Barrettes, (2) Coins, Comb, Pencil, Keys, Doll, Pretzel
Giggiy-Wiggly, Snickety Snick, by R. Supraner, Parents' Magazine Press.
Contents Hard, Soft, Bumpy, Smooth, Tickly, Sharp, Sticky, Stretch, Cold, Hot, Crunchy, Squishy, Fluffy, Curly, Straight.
Good Night, Everyone! By H. Ziefert, Little, Brown & Co.
Contents Stuffed Animals (Bear, Monkey, Mouse, Lamb).
Hello Kitty's Bedtime Search, by S. Bright, Random House.
Contents Socks, Necklace, Tee Shirt, Blanket, Teddy Bear.
If You Give A Mouse A Cookie, By Laura Joffe Numeroff, Harper & Row.
Contents Cookie, Cup, Milk Container, Straw, Mirror, Scissors, Dustbroom, Sponge, Blanket, Pillow, Crayons, Tape, Paper
Suppertime with Frieda Fuzzypaws, by Cyndy Skekeus.
Contents Cookies, Plate, Cup, Pasta, Paper Crayon, Paper Cookie.
Teddy And The Mice, by Brain Ax, Terry's Friend's Series (Board Book).
Contents: Small Wagon or Dump Truck, Blocks, Mice, Nuts, Teddy Bear
The Foot Book, by Dr. Seuss, Random House.
Contents Slippers, Towels, Cotton Balls, Toy Clown, Big Shoes/Small Shoes.
The Gingerbread Man, A Pudgy Pals Board Book.
Contents Cookie, Cookie Cutter (Tin), Stuffed Fox, Cat, Cow
The Indoor Noisy Book, by M. W. Brown, Harper & Row.
Contents Household Objects That Make Sound: Broom, Spoons Clinking, Door Slamming, Eating Raw Carrots or Celery, Slurping Pudding, Footsteps, Telephone Ringing.
The Jacket I Wear In The Snow, by Shirely Nellzel, Scholastic Press.
Contents Red Wool Hat and Scarf, Zippered Jacket, Sweater, Boots, Long Underwear, Socks, Jeans.
The Little Engine That Could, by Watty Piper, Platt & Munk Publishers.
Contents Dolls, Balls, Toy Engine, Sailboats, Toy Animals, Clown
The Longest Noodle, by Suzette Wright, American Printing House for the Blind.
Contents Noodle, Fork, Shoelace, Jump Rope, Ribbon, Yarn.
The Runaway Bunny, by Margaret Wise Brown, Harper & Row.
Contents Toy Fish, Rock, Gardening Tools, Watering Can, Toy Bird, Sailboat, StuffedBunny, Carrot.
The Saucepan Game, by J. Ormerod., Lee & Shepard Books.
Contents Pan with a Lid, Stuffed Toy Cat.
The Sweet Smells of Christmas, by Patricia Scarry, (Scratch and sniff). Golden Press
Contents Cinnamon, Pine Cone, Candy Cane, Spirit of Peppermint, Ginger, Cocoa
The Three Little Kittens, by Kate Gleeson, Golden Books.
Contents (3) Stuffed Kittens, (3) Small Pie Tins, Soap, Mittens; Optional Clothes Line & Clips.
The Three Little Pigs, Golden Sound Story, Golden Press.
Contents Brick, Sticks, Hammer, Hat, Straw.
Underwear, by Mary Elise Monsell, National Braille Press, (Print/Braille)
Contents Different Kinds of Underwear, Slippers.
In the world of Down syndrome, there are many people who are beautiful writers, great thinkers, or tremendous advocates for our children. I have had the good fortune to have become friends over the last few years to a lady who manages to have all of the above attributes and then some. Passionate, engaging, funny, brilliantly in-tune with her children and her world, Jennifer Graf Groneberg has fast become a force to be reckoned with.
There are many books written on the subject of Down syndrome, myriad collections on the health effects of triplicate chromosomes, the effect on siblings, the education and care of the children themselves, even philosophical tomes that try to educate the masses on just why it is that children "like that" should never be born at all. But sparse few that dare to explain what it really feels like to be thrust into the world of Down syndrome with no idea whatsoever of what to do or where to turn.
Road Map to Holland (NAL/Penguin) helps answer those questions. I was lucky enough to have some "insider help" (thanks Jennifer!) getting a copy, and read it cover to cover and back again in less than 4 hours.
I must say, for the record, that I was quite excited to read this book, having seen some of the story unfold in real life and knowing Jennifer to be an eloquent and loving writer. I had always read her contributions to our shared Down syndrome board excitedly. She has a passion for our kids that leaps off the page, and like me, an overwhelming desire to help new parents find their way. So my disclaimer is this: I am prejudiced towards liking just about anything she writes, and may well have gushed over the book regardless of it's quality, simply because I adore her and her family. But that is not what happened.
This book was an engaging, emotional, familiar journey for me. My own child with DS is almost 10 years old now, and her life has been a joyful noisy experience. For the most part, I think I am "there" in terms of acceptance. I love this child so fully, I cannot imagine changing her or taking away the Down syndrome. Oftentimes, when I read a book by a "new" parent, I find myself nodding knowingly, happy that they have discovered something that is old hat to me. I feel like I have been through it, and I rarely find myself emotionally invested. I am happy for them, they made it, they survived and found the brilliant light on the other end. Like me. But this book left me sobbing, it pulled me back so many times that Jennifer might as well have been writing MY story. I was not just "the older kid's mom", I was that mom with the emotions pouring out of me, the gut-wrenching recognition of a different future, the mother of a baby in the NICU fighting for life, the guilt-ridden risk taker who should have known not to gamble on another child.
Jennifer is all of those women, she is every part of me as I went through this journey. She thinks like I think, feels like I feel, and gauges the world as I do, in terms of kindness. She opens her eyes, reaches into the basket, and pulls out a bottle. She asks if she can touch me, and again, I say yes. She dabs some of the liquid from the bottle on her index finger, then taps each of my earlobes. I'm enveloped in fragrance-the white lilacs blooming in the moonlight. The heady peonies. Sun-dried cotton pillowcases. My grandmother's kitchen in the mornings.
"What is it?" I ask.
"Forgiveness," She says.
It is the one, perfect word. I crack. tears flow out of me like a river flowing to the ocean. I have so much guilt.I was too old to have a baby. Or it's deeper within me, a rotten core of bad genes that Avery has to pay for. My selfishness, my doubt. It all comes pouring out.
"I was so afraid," I say.
I thought I was more "there" than I was. Reading this book showed me that there still are some little wounds that need tending, some forgiveness that needs to be given. In her words I recognize how hard I have been on myself. If I can forgive her her worries and fears, well then I can forgive mine, too. As I tell her my story, I can feel the sadness lift from my body, replaced by a newborn tenderness. It is forgiveness, for Avery and for me.
A few days ago, I received a beautiful short email from Jennifer. She said:You have been an inspiration to me, and I can't say it enough: your posts at Downsyn.com helped me envision a life for Avery. A life of hope, and of possibility. And it was Ciarra's eyes that made me see this: literally! Her eyes are the most beautiful I have ever seen and I remember thinking, Wow. There's nothing but beauty here, she's stunning. And then I could see Avery that way, too. And now I see all our kids that way, and I really want to thank you. For helping me find the way "home."
xoxoxoxo
Jennifer's book has shown me what it is besides the love of my family and closest friends, besides the love of this amazing child, that saved me. What saved me was the fact that I have had the privilege of telling my story to new moms over the years. I have been blessed with a child who's story has shone a little light on the Roadmap to Holland as it was written, and to have that light reflected back at me gently and lovingly by this tenderhearted and precious author.
Even if she wasn't my friend, even if I didn't think she hung the moon, I would highly recommend this book. For any parent that has grown up spiritually and emotionally as a result of raising their children, and especially for any parent handed a baby in one hand and a genetic diagnosis in the other, it is a Godsend. The Road Map leads to buried treasure. You find it when you least expect it, and it changes your life forever.
"That's the sign I want to use to tell Sarah what it's like being Avery's mom. Big love, big joy. Let go. Hug yourself and swing your body and smile and expect that the world will receive you just as you are, and it will. It will because you make it so, with all your heart and your whole body, smiling, swaying back and forth so fast and pure that the surety of it makes you dizzy."
I have been following this young mom's blog for a few months now. her 4th child, a baby girl named Audrey, will be born via c-section today, and is not expected to live.
This woman personifies courage, and her faith is that kind of faith that makes you want God in your life. She could be screaming, angry, bitter. Instead, she uses her incredible voice and her story to show others the way to that faith. Her words often leave me crying, but then again, I am the worlds biggest sap. She is doing what so many women in her shoes wont do, trust God, have faith, give her little one every chance to have the days she was intended to have. And she does it with a grace I still cant fathom.
I hope you will go read there. I hope her words move you, and if you, like me, are still searching for your way, that just maybe you will find something there to lead you home.
My life has been full of pain and loss and anger. I am in a time of searching, trying to find a better way. I guess I am trying to fight it, in a way, to not trust completely, to have my OWN strength and not need anyone..even God. But the pull is so strong. Even just the music on that blog has touched me. I feel like this little one, in some weird and very unfair way, is here to find people like me, to bring us to our knees and into the arms of Jesus. I am still fighting it, I am not ready to speak the words, or to jump in with both feet. But like it or not, I am here, on the brink, and believing even more because of Angie and Todd and Audrey Caroline. I must admit, I think God might be making a mistake. Are the lives brought to Jesus worth this precious child's life? Is it arrogant of me to believe that *I* and others like me...nothing...are worth her life? Thats my internal wrestling match. Somehow, this small voice keeps whispering to me:
John 9:3
New American Standard Bible (©1995)
Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.
Luke 1:58 Her neighbors and her relatives heard that the Lord had magnified his mercy towards her, and they rejoiced with her.
I was cleaning out a drawer today and found a letter written 91/2 years ago by my father. He was in prison at the time, and we had been through the ups and downs of our relationship so many times I was dizzied by the process. My parents divorced when I was very young, and I was adopted by my mothers second husband when I was 6. I saw him only 2-3 times again throughout my childhood, none of those times good ones, they were colored by the attitudes and emotions of the bitterness and hatred and anger of the divorce. I remember mostly being scared of him. But I was fascinated too, by the man I imagined him to be. In my mind, he was tall, dark and handsome. But more than that, he loved me, and there was no way he ever chose to be gone from our lives this way. I was wrong.
The truth is, he is a short, handsome, man ravaged by a lifetime of alcoholism and drug abuse. He has lived a hard life, violent and abusive, on both the receiving and the giving ends of cruely. He was sold as a little boy to a rich woman who wanted a son. A perfect son. He wasnt it. He was one of those bad boys mothers warn their little girls about. No one warned my mother, by the time she came along, the youngest of 16, no one cared what happened, as long as she didnt need anything from them.
I re-met him when my oldest child was born. I was 19. I remember sitting in his truck, recognizing he was never going to be the daddy I dreamed of, acutely aware that history was being rewritten. He was a drunk, he was poor, he was small and old and washed-up. He was my father. I had spent so many years chasing after him in my mind, building him up into something he never was and would never be. In his tired old truck, in his faded jeans and cowboy boots, no license and no hope...he was all I had. Flannels and red-rimmed washed-out eyes. He was not the father I imagined walking me down the aisle. I choked back shame and embarrassment, and replaced it with a burning resentment..he had CHOSEN this life. He had CHOSEN to leave us. The stories were mostly true. One thing that I knew, even then, he always loved us. It is not the kind of love fathers should have for their kids, it was angry and resentful, the love of owerniship versus parenthood. "I have a fine son and a beautiful daughter." Only, I wasnt beautiful, and at that moment I was feeling even less so. Was I never anything more than a Theriault, as I had been told? The apple doesnt fall far from the tree, and no matter how good I was, how hard I tried, I was always going to be a Theriault in the eyes of the world. It wasnt fair, and yet here was I, judging him. My own father didnt measure up. Maybe I really was a Theriault, after all?
I opened the letter, remembering how well he seemed to love me when all he had was time. Letters full of a father's words came weekly, talking about his grand plans for his life, explaining patiently how he had loved us. Many times, they were words of sorrow, for what he had missed, for how he had treated my mother. His honesty was so blunt, when there was no bottle to hide behind. Some people say you get more truths from a drunk. In his case, the alcohol masks who he really is, it allows anger and resentment and fury to come screaming from his lips. He is never to blame, he takes no responsibility, it is all our imaginations. When he is sober for a long period of time, he faces facts and is much more willing to be rational.
The letter talked about how he was a terrible parent. How he should have fought harder, how he could have done more to show us that he did love us. It talked about letters he had sent to an aunt, who never gave them to us. It talked about his childhood, his dreams, who he had wanted to be. It talked about how poverty and a terrible childhood had robbed him of his own dreams, how he had wanted to BE somebody. It talked about his shame at sitting in a prison, behind steel bars, locked away from the world.
Mostly, the letter talked about his new baby granddaughter, Ciarra Nichole. She had just been born, and he had never seen her. He talked about how it reminded him of my birth, and how ashamed he was that he was behind bars, then, too. He talked about how he had let me down, but how he really wanted to be a good Grandpa, if I would let him. He talked about the other kids, Kristin, Jesse, and Alex...and how he hadnt realized just WHAT he was missing with them. But that hearing Ciarra was born with Down syndrome, how much he realized I would need him. That SHE would need him. He told me he checked out a book through the prison library. Count Us In, it was called. He was impressed with the young men who wrote it. He was surprised, he said, that "retarded people" could write so well, that their words could bring him to tears. That they could reach into his angry old heart and make him wish he could scoop up his new baby granddaughter and be for her the man he wasnt for me. He wanted me to know he would be different, forever, from now on, and that being her Grandpa meant so much to him.
That was 9 years ago. he has seen her maybe three times. He does a good job at talking the talk, but he doesnt know her, nor she him. He got out of prison and found the bottle again, and prescription drugs, the old crowd, and all the reasons to hate. And we have become an afterthought, I suppose. He means well. But his world swallows him whole, and he has enough good excuses to let him get away with it. I love my Dad, but he is not the man I dreamed of. he is not the man HE dreamed of. He is getting old now, and recent events have caused a rift between us once again. I bought his house and land, when the town foreclosed on it. He resisted moving out, even though that was the deal. He would move into Senior Citizen housing, it was safer, less stressful for him. In the end, he moved out angry, resentful, and blaming my mother for all the bad in his life. The circle keeps going round, the merry go round keeps spinning. I jumped off. He is still on it, and he always will be, Im afraid.
I hold on to this letter, nonetheless. It is a reminder of who he would be if the alcohol and drugs disappeared. In the letter, he is the daddy and the grandpa of my dreams. When I am old, maybe I can look back on it and believe again that he was the Daddy I dreamed of, the one who would come riding in and make everything ok. Swoop me up in his arms and make it all better. Dote on his grandchild, the special one, the one who made him cry. The one who like her mother, couldnt change him.
