you’re neither fish nor fowl when you’re chronically ill

Aug 24, 2015 by

Chronic illness is such a weird animal. A couple times a year, you might find yourself having a day where you feel completely normal. Pain free, energetic, focused, able to move around easily. It’s euphoric. And you hardly ever realize it’s happening until after the fact, when the pain comes back. It’s pretty amazing when it happens.

And there are days — and nights, oh, the endless nights — where you just want to curl into the fetal position and pretend this isn’t your life, because you are so miserable with pain and nausea. It feels relentless and it strips you down to the animal inside you, the one that’s got its teeth bared and is willing to gnaw its own leg off if it means that it gets to live. You breathe through minute after minute, and that encompasses all the priorities you thought you had, like making sure that you eat a family meal together every night, getting that bank paperwork done, and finishing the laundry. Screw it, says your hind brain. Just breathe, and make it to the next moment and the next breath without breaking.

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Sorry, I’m not sorry

Jul 21, 2015 by

As a special needs parent I’ve come to realize a great many things about people (that includes friends, family, neighbors, and those I don’t know well) and to be honest, not all of these realizations have been pleasant.

Luckily the unpleasant realizations have been few and far between. For example, we have found out that there were people in our lives that we thought were friends but ultimately couldn’t handle the idea of being friends with a family that had a special needs kid. For the life of me, I can’t understand why, but at the end of the day, in my mind, no real loss there.

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A Special Child Care Search

Jun 23, 2015 by

With summer officially here, if parents haven’t already done so they will soon be looking for ways to keep their kids entertained for the next two and half months. Luckily (or not) for us, with three kids under the age of four, we’re not really at the stage of looking at summer camps just yet. Instead, after four years with the same daycare we found ourselves in the market for a new daycare.

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A Letter to New Special Needs Parents

Mar 20, 2015 by

Listen to me. (Err… read me.) It is okay to feel overwhelmed. It is okay to not think about it sometimes. It is okay to think about it all the time. This is something that you have to grow through just as your kid does. It takes time to come to terms with “special needs.” Nothing anyone can tell you will be the magic key to getting you through it easier or faster. There will be days that suck for sure. Way more in the beginning than later. But there WILL come a time where you realize your kid’s life IS normal. She IS normal. YOU are normal. Your family is NORMAL. It took me a solid year to not think about Down syndrome every waking second of every day. It took me two years to not wake up with it being the first thing to enter my brain.  I know she HAS Down syndrome and that she will never, ever grow out of it.  But it isn’t what defines her. When I look at my kid, I see my KID, not a chromosome count.  You’ll get there.  I hope one day, the rest of the world will, too.

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Sometimes I even surprise myself

Jan 29, 2015 by

A few months back, I was fortunate to attend a panel presentation featuring four locals who are part of the transgender community.  Three were transgender individuals and another was the mother of a grown child who had recently begun a transition.  Their message was fascinating and here’s why: it’s exactly what I’ve been trying to convey to people about my daughter for more than four years.

They didn’t want special treatment (whether positive or negative) they just want to BE.  They weren’t looking to be pitied. Sure they’d had struggles but who hasn’t?  They were looking for some degree of understanding, acceptance, and just the ability to go about their lives. Isn’t that really just what everyone wants? Because they are people, just like everyone else.

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