Knowing what we do (or think that we do) about Down syndrome, I didn’t think that we would ever have to worry about Rebecca sneaking out at night, but now I’m not so sure….
I was walking by her bedroom yesterday morning and did a double take. I would have sworn that she was already downstairs with Sarah, so I was somewhat confused when I caught a quick glimpse of a Rebecca-sized “lump” in the middle of her bed:
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There are so many wonderful versions of Leonard Cohen’s “Hallelujah” out there – originally covered by John Cale, the version performed by the late Jeff Buckley is perhaps the most well-known of them all (the song has also been covered by Bon Jovi).
I think the first time that I heard this song was on the movie “Shrek” (sung by Rufus Wainwright). There is an amazing 4-part arrangement out there by the Norwegian quartet Lind, Nilsen, Fuentes, and Holm. Heck, it even sounds good in Italian when performed by Il Divo.
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One of the joys of having a child with Down syndrome is that they are constantly reminding you of the truly important things in life, simply by living a life full of joy and happiness. They live each day to the fullest, and they live each day full of love.
For Rebecca’s birthday, we took her to see the new Pixar movie “Brave”. Rachel was in town on a business trip, so she met us at the theater. It was a real treat for Rebecca to have her big sister there – it meant an extra lap that she could sit in if things got too scary.
The movie was REALLY good – if you haven’t already seen it, I highly recommend it. I don’t want to spoil it for anyone who hasn’t seen it; suffice it to say that it is a wonderful movie about the bonds within a family and the power of love.
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On this day 52 years ago, a very special little boy was born.
I just LOVE Birthdays! (Especially mine….)
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Yesterday was Rebecca’s birthday, and since she has Celiac Disease, we can’t just go to the store and buy a pre-made cake. Sarah has been doing more cooking around the house, so while she was at the grocery store getting stuff to make dinner, she also bought a box of GF cake mix to make a birthday cake for Rebecca.
This being the Koch family, it was inevitable that things got “interesting”….
I’ve always loved this song – this is without a doubt one of the loveliest versions of it that I have ever heard:
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That’s Jean Louisa Kelly from the wonderful movie “Mr. Holland’s Opus“.
Have a wonderful Wednesday!
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On this day 11 years ago, we were given a very special gift:
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On July 10, 2001, we welcomed Rebecca Claire into the world. She was absolutely perfect – another beautiful daughter. A few hours after her birth, our pediatrician gently informed us that Rebecca had been born with Down syndrome. The next 48 hours were a real emotional roller coaster. We cried, we asked ourselves, “Why?”, and we prayed. A lot.
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I found this in my e-mail this morning – it’s from a member of a discussion board that I’m on:
How do you cope?
Hello all! Hoping this post finds you strong and happy! I have been dealing with MG since March 6,2006, yet still wonder how exactly to COPE with it. All of us remember how strong we were, pre-MG. How we could take on anything (it felt at least)……..
I have very blessed in certain areas. My hubby still loves me. My family is healthy and happy. I am still a wreck. I know I should be grateful I’m still here with my family, but feel cheated, cheated by my body. Granted, I am much stronger now. I can walk, talk, breathe. I still miss the old me. I do know that a lot of us will go into remission. That is what I am praying for daily.
How do you cope with the emotions that having a chronic illness bring?
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“When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature’s God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.”
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It’s been an interesting few days, hasn’t it?
One man’s vote declared that The Government can tax its citizens for not purchasing a good or a service.
And under the law that was upheld, one person – namely the unelected, politically-appointed Secretary of Health and Human Services – gets to decide which goods and services will be provided under that law (and more importantly, which goods and services will NOT be provided).
Congratulations, America – your healthcare system just became a tyrannical dictatorship.
The Fat Lady Has Sung
Koch's Tour 