My parents should be arriving within the next 2 hours. I’m so excited to see them again! I haven’t seen them since April when my grandfather passed away. So if I’m not around a lot in the next 1 1/2 week, you know why, but I’m sure I’ll have time to post!
Phew, thank goodness we’re all feeling much better today! There’s nothing worse than being a mom & being sick and having your children sick at the same time too!
Anyways, I came across this website a while back and forgot to mention it until now, Patricia Bauer who also is a parent of a child, actually a young adult with Down syndrome, has an awesome disability advocacy website!
I’ve been so busy lately working on the CDSC’s new prenatal first call program! It’s a lot of work getting a committee together! Yesterday I met with the CDSC’s president and a very nice lady who is going to be helping with our committee’s training.
I’ve been in overdrive the past couple weeks getting this program up and running after reading about the new prenatal screening test that will be in the US in the next year or so. Since it’s a blood test and eventually going to be considered a diagnostic test rather than a screening test, there’s unfortunatly going to be more pregnancies terminated. So, the more prenatal outreach programs out there, the better!!
I’m also working on ways of raising more funds for our program too. Thankfully for now, the NDSC is sending me copies of Light at the End of the Tunnel to hand out to our expecting families until we can get a pamphlet of our own written and printed up. So much to do, so little time!
I’m starting to feel better. I still feel like I’ve been run over by a semi truck but at least not running to the bathroom constantly. Having the flu stinks, literally…
Yesterday was the Benefit Ride & Concert 4 Corey and it was a success! The band rocked, the motorcycles were awesome, it was so much fun! Being there volunteering made me realize something about yesterday, the CDSC not only benefited from raising money (always good) but a new group of people that not many knew much about Down syndrome left there with a new knowledge & awareness about Down syndrome. And I can tell you one thing., bikers have HUGE hearts! They reached into their pockets and gave so much money to the CDSC! Thank you to any of you I met yesterday and are reading this today! Also, thank you to The Whiskey River Band for providing our entertainment yesterday!!!
One of our local newspapers’ photographers showed up yesterday and check out this picture, she looks familiar, LOL! Also, click here for more! Below are more pictures that were emailed to me. Unfortunatly, I didn’t get to take any pictures. When I took my camera out of it’s case, I discovered that my camera’s screen is cracked! My heart sank, so now I need to buy a new camera… anyways, here are some more pictures!
I always enjoy reading Beverly Beckham’s articles!!!
She wasn’t the prettiest child in the room, because they were all the prettiest, babies still, not one of them over 3, flawless skin, bright eyes, shy, sweet smiles. But my daughter and I were drawn to this particular baby because she reminded us of Lucy, my daughter’s little girl, with her sweet round face and her light wispy hair and the thin pale line on her breastbone that told us she had had heart surgery, too.
“How old is she?” we asked her mother.
“Six months,” the mother said, and we gushed and said something like, “So cute.” And “Lucy is 5 now. Hard to believe.”
“What’s your baby’s name?” my daughter asked.
The mother said Grace. And we echoed the word, which means blessing, and it hung in the air, a name so weighted with truth.
Then we sat down, my daughter and I on one side of the room, Grace and her mother on the other.
And the speakers began their program.
This happened a week ago at the Seaport Hotel in Boston, where we were attending the National Down Syndrome Congress. We had signed up for the “New Parent’s Survival Guide” not because we are new parents, though my daughter is new enough, but because we wanted to meet the two speakers.
Kathryn Lynard Soper lives in Utah, has seven children, and contributed to and edited the book. “Gifts - Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.” Jennifer Graf Groneberg lives in Montana, has three children, and has just published “Road Map to Holland - How I Found My Way Through My Son’s First Two Years With Down Syndrome.” Both women have blogs. Both are prolific writers. And both have sons with Down syndrome.
When Soper’s son Thomas was born, there wasn’t a book for her to read that told her what she wanted to know. There were guides and charts and medical treatises and a few stories about choosing to have a child with Down sydrome, but not a single book in which mothers talked about their experiences, their feelings, their lives, and their children. Soper wrote about her life with Thomas in her blog, and hundreds of mothers wrote back. And, in time, hundreds of stories were shared.
Soper collected and organized them and sent them to Woodbine House, a publisher specializing in special needs, and the stories got published, beautiful essays interspersed with photographs of beautiful children. Though the stories address fear and worry and preconceptions and misconceptions, the common denominator, what holds them together, is love.
That’s what no one tells you when you have a child who is not perfect. That love changes everything. That love propels you from the bed to the cradle in the middle of the night. That love is why you sing even when you’re bone tired. That love is what fills your heart with pride and your eyes with tears, sometimes many times. That love is the reason all parents, even parents whose kids have challenges that seem burdensome and overwhelming to everyone else, say with certainty, “I wouldn’t trade my child for any one else’s.”
Love is what the tests can’t measure.
When Lucy was born just five years ago, “Gifts” and “Road Map to Holland” hadn’t been published. Someone gave us “When Bad Things Happen to Good People.” Someone meant well, but Lucy was never a bad thing.
Sometime in the middle of the 90-minute workshop, when Soper paused and asked for questions, Grace’s mother raised her hand, stood up and thanked Soper for compiling her book. Then she went on to explain how this little collection of simple stories written by 63 ordinary women saved her baby Grace’s life.
“We had a week to decide,” she said. Her test had come back positive, the doctors were somber, the literature bleak. And every bit of life experience she and her husband had was limited to feeling sorry for and frightened by every disabled person they had seen but didn’t know.
“Gifts” took them beyond the stereotypes and showed them that “disabled” is a loaded and omissive word with all the bad left in and all the good left out.
“Road Map to Holland” does the same thing.
Two books of love stories. Two books that are already changing the way people think.
Beverly Beckham can be reached at bevbeckham@aol.com. 
Poor Joey, now he has an upset tummy. He had a major diaper blow out a little bit ago. It’s no wonder he was cranky earlier. I’m just hoping that it’s not the start of the flu and just something he ate. I can’t afford to have the flu go through this house…
Today is definetly a Monday… both kiddos are cranky.
Both of Leah’s bottom middle teeth are popping through, so I have a cranky teething baby girl.
As for Joey, I have no clue why he’s cranky… maybe because Leah is cranky? Sympathy crankiness??
Two cranky kiddos equals a cranky mommy!
I can’t believe how much fun I had over the weekend in Boston and all the wonderful friends I finally got to meet in person! It was a pleasure to meet each and every one of you! I attended so many interesting and educational workshops but I will talk about those in a separate post later.
Myself with Michelle and Kayla!
How about some Georgia cuteness?!?!
And beautiful Mayson!
R, Nicole and me!
Bloggers united!!!
The author of Roadmap to Holland, Jennifer Graf Groneburg, me and Gifts editor, Kathryn Lynard Soper
Mitchell Levitz and Jason Kingsley
Emily Perl Kingsley, author of Welcome to Holland
Authors of Count Us In: Growing up With Down Syndrome
Me with my hero, Emily Perl Kingsley
How often do I get a picture with just myself in it, lol!! Boston was wonderful… I can’t wait until next year’s convention!
Well, I’m packed and ready to go! Just waiting on one of my girlfriends to get here that I’m rooming with and then we’re off to pick up one more mom, then heading northeast for the weekend!
A mom’s weekend is exactly what I need, along with meeting some of my online friends that I’ve “known” for the past 2 years! See you ladies soon!!!!
My sister in law, Stephanie’s mother passed away suddenly this morning. Carol had been battling cancer and got an infection. Please pray for the whole Meyer family to make it through this rough time and for Carol to rest in peace.
She was a kind, wonderful woman who always had a smile on her face. Carol, you will be missed by our whole family.
I’m heading up to Boston on Thursday for the National Down Syndrome Congress’s annual convention! Who else is going?!?!
Unfortunatly, Joey is not going… I’m doing a mom’s weekend with a couple other moms from the CDSC. I need a break and what better time to take one!
I’m so excited, so many workshops to go to, so many of my friends to meet, so little time!
Things have been a bit crazy again. Joey goes from feeling like a million dollars to completely and totally crumby. I feel so bad! Anyways, here are some pictures from the BBQ we had on Friday!
Leah had a couple new foods at the BBQ, the first one… corn on the cob!
Joey’s best buddy, Corey! Isn’t he so handsome?!
Leah’s first popsicle!!!
Sticky blue & red face!
Bubbles but not feeling too hot…
Breaks my heart….
Wow, thank you to Nicole for posting the previous article on prenatal testing and about this book! I too, can’t wait to buy it!
We need to see America through Connor Gifford’s eyes
By LAURIE HIGGINS, CONTRIBUTING WRITER
July 06, 2008 6:00 AM
What happens when a 26-year-old man with Down syndrome meets a soon-to-be grandmother close to four decades older than him? In the case of Nantucket residents Connor Gifford and Victoria Harris, a beautiful friendship was born that ultimately changed both their life paths and led to the publication of a book about our nation’s history, “America According to Connor Gifford.”
In the prologue to the book, Gifford thanks God for giving him the gift of Down syndrome, and he explains that after he was born doctors diagnosed him with mosaic Down syndrome.
“I was so blessed, and that’s why I thank God for my gift,” Gifford says. “I am sensitive to things like you don’t mistreat somebody who is, let’s say, black, or Indian, or Mexican. We all have something in ourselves that we can say to the world, ‘Look out world, here I come.’”
That sentiment is certainly coming true for Gifford. “The World According to Connor Gifford” was released on Nantucket in June and is making its New England debut on this Fourth of July weekend. It already is selling well and getting attention from the national news media. Tim Russert wrote an endorsement of the book and planned to have Gifford on “Meet the Press” before his untimely death. Chris Matthews (a part-time Nantucket resident) of MSNBC’s “Hardball With Chris Matthews” met Gifford and loved the book.
Gifford is a native of Perrysburg, Ohio, where he graduated from high school is 2002. His parents pushed to have him take mainstream classes, and he fell in love with history in the eighth grade. He now lives year-round on Nantucket.
Harris’ background is in documentary filmmaking, and she’s the founder of the Harris Group, which creates Fortune 500 branding campaigns. She was working on a first novel when she met Gifford.
In a telephone interview, Harris and Gifford, each on a different extension, explained how the book came to be.
The two met at Harris’ daughter’s house on Nantucket in January of 2007.
“Connor and I just really liked each other right off the bat,” Harris says. “We got talking about history, and I realized there was this very profound sense of the essence of who we are as a nation in this young man’s mind.”
Harris went home to Rochester, N.Y., but she could not stop thinking about the conversation. By summer, she knew she wanted Gifford to write a book, and she created the concept of “America According to Connor Gifford.” She didn’t have any idea what the book would look like, or even be about, but she called his parents, Julie and Chuck Gifford, and asked if she could interview their son about his thoughts on history.
“I felt deeply that the knowledge that was in Connor’s mind, that he couldn’t necessarily express in the traditional way that somebody sits down and writes a book, could be released if I could interview him,” Harris says.
Targeting the womb, Down syndrome, disabilities
Last weekend at my favorite ice cream shop, I met an adorable 4-year-old boy named Sully. He had bright blue, inquisitive eyes, a happy smile and, judging from his telltale facial features, Down syndrome.
Only weeks before I had read a staggering statistic: 92 percent of unborn children diagnosed with Down syndrome are now aborted. I don’t normally get overly exercised about the issue of abortion, but this number struck me as I looked at Sully. With only 8 percent of prospective Down parents choosing to have their child, Sully may grow up with no peers to interact with in his life. Somehow, we are saying the lives of children with Down mean less than those of so-called normal children.
Admittedly, the economic costs of raising children with Down can be onerous. The emotional strain can cause rifts between parents. There can be serious medical complications. As a matter of fact, in a survey conducted by Brian Skotko at Harvard Medical School, 3,000 mothers receiving the news that their child would have Down syndrome reported that physicians expressed negative views about them continuing their pregnancies.
Something profound and disturbing lies at the heart of this dilemma. If parents and even doctors so devalue the life of a child with Down, what prospects do they have in their lives and in the judgment of society at large?
Of course, the 92 percent abortion rate pertains only to those women having prenatal testing for disabilities. The prevalence of children born with Down syndrome has not actually seen a dramatic decrease in the United States (it is approximately 1 in 733), which means that many pregnant women are not getting these tests. But prenatal testing has become safer and more common among younger women, and now more than 70 percent are undergoing screening. So the question is what will these women, parents and doctors do, as information about unborn children’s disabilities becomes more readily available? At the current rate, we will eventually exterminate children with Down from society.
I snapped a couple pictures of Joey before and after his T&A. I felt so bad for him afterwards. Poor little guy felt so bad! He’s still not back to his old self but feeling better each day. Thankfully he is drinking now!
Chilling out reading a book waiting to be called to the OR.
“Mommy, I’m all done feeling like this! All done!”
Doesn’t this face break your heart??
Thanks to Maureen I have a new blog to read and wanted to share with everyone else. Go visit Dillion and his mom!
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