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Journey of Hope: June 2011

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Wednesday, June 15, 2011. So long, Dr. Brown. I dreamed about this day, toying with it in my brain. What would it be like? What would I do with all that extra time? Fool around on Facebook? Play with the kids more? Alas, it's here. Earlier this month, for the first time in THREE AND A HALF YEARS, we are bottle-free. Hope has been off bottles since January and Oscar finally got the hang of sippy cups about two weeks ago. Dr. Brown has finally left the building. Subscribe to: Posts (Atom). Walk with the Ri...

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Journey of Hope: October 2007

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Wednesday, October 31, 2007. I'm Joel. She's Mo. We're newspaper journalists from suburban Detroit. Enough about us. The cute girl is Hope. She is awesome. Hope was born on Halloween in 2007. She was teensy. 3 pounds, 15 ounces at 37 weeks, most of which was a magnificent shock of red hair and big, beautiful eyes. Doctors didn't need long to diagnose her with Cornelia de. Syndrome. They had experience: Our son, Will. 18, another birth defect. That triggered numerous ultrasounds and echocardiograms. We we...

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Journey of Hope: March 2011

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Monday, March 21, 2011. Sometimes my heart aches for CdLS kids and how much they have to go through. With so many of our kids, their resilience AMAZES me. From reflux issues to sinus problems to muscle weakness to teeth problems, their challenges are endless. On top of it all, many can't even tell loved ones if they're hurting because they're non-verbal. And yet, they trudge on, fight back, and endure. Are we anywhere near being fully potty-trained? Wednesday, March 2, 2011. He's creeping all over the pl...

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Journey of Hope: February 2012

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Tuesday, February 21, 2012. Not long ago, a fellow CdLS parent posted a status update on Facebook about his son's 10th birthday. He mentioned how proud he was of his son and then he wrote something that brought tears to my eyes. He said, "I'd give anything to hear you speak just a single sentence." I get teary-eyed just thinking about it. But just because Hope can't speak doesn't mean we're giving up on communicating with her. We'll do anything to communicate with her. But Hope was very inconsistent with...

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Journey of Hope: August 2007

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Friday, August 10, 2007. Cornelia de Lange Syndrome is a congenital condition caused by 1-2 genes that decide to do their own thing. They're important genes, acting like light switches or dials that tell other genes how much to form during that batted-eye, God moment when sperm meets egg and life begins. Known as CdLS, the syndrome is pretty rare: About 1 in 10,000 to 30,000 live births. Another commonality: Photos don't do those with CdLS justice. They're lookers. In Avon, Conn. Receive posts by email.

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Journey of Hope: October 2011

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Monday, October 17, 2011. I went running yesterday - "running" might be a bit of an exaggeration; a turtle could beat me in a foot race - and the thought hit me again: Joel ran a marathon. He ran 26.2 miles. Pardon my language, but how frickin' cool is that? To everyone who supported Joel and our family, thank you so much. It was such an incredible experience and it felt so good to see him accomplish this goal, to give back to the foundation, and to honor Will and Hope. Subscribe to: Posts (Atom).

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Journey of Hope: A quiet girl

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Tuesday, February 21, 2012. Not long ago, a fellow CdLS parent posted a status update on Facebook about his son's 10th birthday. He mentioned how proud he was of his son and then he wrote something that brought tears to my eyes. He said, "I'd give anything to hear you speak just a single sentence." I get teary-eyed just thinking about it. But just because Hope can't speak doesn't mean we're giving up on communicating with her. We'll do anything to communicate with her. But Hope was very inconsistent with...

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Journey of Hope: December 2010

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Thursday, December 23, 2010. Oscar in Funky Town. Oscar has discovered the thrill of '80s one-hit wonders Lipps Inc. Can you blame the kid? Subscribe to: Posts (Atom). Link to Donate to Marathon Fundraiser for CdLS. To search the site, enter keyword here. Oscar in Funky Town. Receive posts by email. Enter your email address:. Subscribe in a reader. Ben and his Brothers: Life with 4 boys and CdLS. CdLS Awareness Day 2014. Walk with the Riedmiller Family. Honey, we need more cooking spray. Con Santo y Seña.

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Journey of Hope: November 2010

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Sunday, November 14, 2010. Birthday and all that jazz. Big stuff. Hope turned three. She's pulling herself to a stand — as we learned last weekend when we came in to her room and found her cruising in her crib — and Oscar is nearly sitting. More on that later. Wednesday, November 3, 2010. And now, an Oscar video. Oscar is a cheap smile and expensive laugh. The kid spends two-thirds of the day smiling, and doesn't give much of a hoot about what. Ladies in the super market? Hey there, momma.

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Journey of Hope: April 2011

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Wednesday, April 27, 2011. Paws off the Easter eggs, Lulu. If you've ever wondered if dogs find Easter eggs appetizing, they do. Our dog helped herself to a few of ours. Or six. It was like something out of a sitcom. We decorated our eggs - Hope was a little more into it this year and Oscar just wanted to the lick the big, cold things we kept handing him - and then I went to the store while they dried. Joel gave the kids a bath. Lulu, meanwhile, seems to have had no problem digesting six eggs. She ha...