Disclaimer: I am writing this as a woman, so it’s going to have a womanly slant. No, I do not hate men. Yes, I know there are plenty of great Daddies who do a good job of helping out–and I salute you, Good Daddy! I spent the majority of the past 3 weeks in…
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Written on
September 23, 2012 by
Maggie
Need a little help here, PLEASE: My Big Little Man (who is smaller by 5 lbs now than My Little Man) got that back-to-school cold going around. For us, that means an imminent sinus infection as his compressed sinus cavities — a trait common to those with Down syndrome — makes him prone to this…
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“And I would have stayed up with you all night…” (The Fray) Funny…my nights are filled with constant coughing. Wet washcloths to the forehead. Pulse oximetry. Puking of mucus. Pedialyte. Medication. Pillows. My little dude is not doing so hot. His lungs aren’t doing their job very well. There’s Lysol, medications, inhalers, nebulizers,…
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So, how does one do it? Work and be Mom of the Medically Fragile? I need to know. I have a job interview. For a real, big girl job. In my field. At a large hospital. In a position that I, a few years ago, could have only dreamed about. I don’t really want to…
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Written on
January 5, 2012 by
Gina
Remember that list of caseworkers I told you about? Well, in my haste to count on all my fingers the number of caseworkers in our life, I neglected one very, VERY important caseworker / liaison we’ll call “Miss W, The Insurance Gal”. I could tell you a lot about “Miss W, The Insurance Gal”; give…
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Written on
November 17, 2011 by
Kimberly
I’ve had emotional whiplash all week. Grandma is visiting us this week. In case you don’t know the significance of those words you can read the worst part of it here. I’ve written about our struggles with her before. Turns out she does not have Alzheimers or dementia, per se, but the neurological damage she…
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Written on
November 16, 2011 by
Emily
Speak Now for Kids is an advocacy campaign of the National Association of Children’s Hospitals (N.A.C.H.) designed to engage child advocates in communicating with Congress before they cut funding for two key children’s health care programs: Medicaid, which funds health care coverage for one in three children in the U.S. and the Children’s Hospital Graduate…
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Written on
October 31, 2011 by
Suzanne
When my daughter Zoe was a toddler, she didn’t spend her days spreading out her toys and playing on our cool tile floor , or toddling around clutching her favorite doll with sticky juice hands like her big sister Olivia did. Instead, Zoe preferred to cuddle for comfort. Her speech didn’t develop until late so…
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Written on
October 20, 2011 by
Gina
At the end of our lives, we again become vulnerable. Charged to those with hands we hope are gentle, hearts we hope are warm. Family we wish…if all goes well. But what about our children? So many times we are focused on the now, as we should be, as we need to be…with the future…
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I did it. I went to the Dark Side. All this time, I’ve been super vocal about the difference between being an advocate and being a…. well, you know. Yesterday, all that changed. (To read the whole drama, go here) I felt bad about it all day. I felt like I had worked so hard…
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