Health Care — 5 Minutes for Special Needs

Health Care


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 a haze of Christmas frenzy, family, and…trying to avoid the news. I really think if I hear the word “Fiscal Cliff” one more time, I may have to go find it and fling myself over it!

As I was driving this morning, I thought of something.


We live in a pretty great country. I mean, I am as patriotic as they come. I cry during the Olympics. I get goose bumps when someone sings the National Anthem well. I even teared up when I was voting. You know, it’s just my thing.

However, if I may say so, I think the way we get people elected is ridiculous. A person has to be worth 570 bazillion dollars to run to begin with. Then, sh can’t really say what she wants, because she doesn’t want to make anyone mad. He makes promises that he can’t keep. So, we have a boat load of rich folks, who’d rather be on a yacht somewhere, making decisions for…me.

Now, if things went the way they should…a bunch of Moms (and probably a few Special Moms too!)  would run this country. Seriously.

  • A mom can balance a budget. So what if you have to eat beans and rice for dinner the entire last week of the month…be glad you get food at all, there are starving children in Africa.
  • A mom wouldn’t deal with the bickering and fighting. She’d send one to that chair and one to the other chair and threaten to ground the offenders until they were Yoda’s age.
  • If anyone showed up late, a mom would pitch a fit and demand to know what was more important than showing up on time, because that is disrespectful!
  • A mom would make everyone hand write thank you notes.
  • A mom doesn’t care who is Democratic and who is Republican. Dang it, if y’all can’t get along and be nice to one another, you’re getting your mouth washed out with soap.
  • And don’t let her hear you talking bad about the President. She may not agree with him all the time, but that man deserves respect, because he is the President of the United States, and you will remember that, Missy.
  • A $9000 party dress is not necessary. Mom can run to TJMaxx and find a perfectly suitable dress, shoes, hosiery  earrings, necklace, bracelet, purse, and a curling iron and not spend but $29.99 (See also: balancing the budget).
  • A mom would make sure everyone called their Granny on holidays. Or whenever else she says you need to call Granny.
  • Who cares where you went to college? You went, right? Momma says that the guy who graduated last in his class in medical school is still called Doctor…
  • If you lie, you fry.


So, as you can see, I’ve lost my mind over the holidays and I think far too much about things that I will never have any control over.

I wish you all a Happy New Year…may 2013 be the year of change, hope, and love for us all!



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Antibiotics: How Do YOU Roll?

My Sick Little Man

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 particular affliction. In addition, he’s inherited my lousy sinuses, which I got from my mom, so he’s got a double whammy! This is his thing!

So there I was at my VERY trusted Doc on Tuesday for a preemptive visit. My Big Little Man was already congested to the point of no in- or out-going passage in either nostril — read: no drip, no air… just STUCK.

Read the full article →


How to Save a Life

“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.






My little dude is not doing so hot.

His lungs aren’t doing their job very well.

There’s Lysol, medications, inhalers, nebulizers, steroids, antibiotics… and yet, it’s not all working too well.

When you read this, I am not sure if we’ll be home or at the hospital.

I don’t want to be at the hospital… it scares me.

I don’t want him to go in with one thing and contract something else.

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The Working Special Needs Mom…

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 work full time. But, the bills accrued by having a SN kid…


(I really can’t expect my husband to carry all that on himself)


I’m torn in so many ways. On one hand, I want to work and make the world of nursing a better place.

Read the full article →


Insurance Advocate: Why You Need One and How To Get One

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 a number of examples of how this woman has made our life easier, insurance more accessible, has caught mistakes, gained us two more IVIG treatments (yes you heard me, two more) that she said was ‘owed’ to us. I could tell you about how she singlehandedly has the Children’s Hospital working for HER (thus for us) to get more approved…I can tell you just how much I want to squeeze this woman with shoulders a little less weighted…but instead, I want to encourage you should get one.

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What a Difference

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 does have has basically the same markers and symptoms. One Doctor even called it “false dementia” which is so sad it’s almost funny. There isn’t anything “false” feeling about it. Previously when we have gone to visit her (all five of us) it has been hard to help her because she gets so angry at everything we do…help her haul things to good will, clean out her pantry, get her bookkeeping caught up, walk the dog…it is all viewed as taking over her life.

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Speak NOW for Kids

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 Medical Education (CHGME) program which funds pediatric residency training.

Children cannot have a voice in making their needs known. We ARE that voice on their behalf.

You can help! I’m asking you to send a direct message to a member of Congress (They’re on Twitter!) or use this simple form to contact your representatives quickly and easily.

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The Anonymous Note, Part 2 And Those Kids Who Inspire Special Needs Moms

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 I spent a lot of time trying to interpret her sound and movement, solicit a response, and get to know my little one, trying to discern what made her happy and what was making her hurt.

Zoe was 3 years old when she was finally diagnosed, when we learned she would never walk by herself.

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Our Children Will Grow Up: What Happens When A Vulnerable Population Becomes Even More Vulnerable?

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 in sight, out of reach, yet yearned for, it’s what we’re working towards. We plan strategies for helping our children become the most independent, productive members of society they’re capable of being. We tend to do this with the thoughts of our children as children, under the umbrella of our protection.

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I Went to the Dark Side…

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 to be well-educated (hello, Master’s Degree in Nursing anyone?) and professional, as well as always prepared and level-headed, when I spoke with Jack’s physicians. When I saw the pain and fear in my son’s eyes, and no one was doing anything about that little fact, I lost my religion and my mind in one fell swoop.

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