Choices.  Chronic illness has been 26 years of constant choices every second of every day.  Ten years ago, I was forced to file for disability and it was one of the hardest choices I have ever had to make.  I have always loved working.  I come from a family with a strong work ethic and hard work is in my genes.  ...more

We have a new diagnosis. How do I tell my kid?

A parent knows what’s best for the child, maybe you don’t agree but that’s not your business – Unknown...more

Parent of One-in-a-billion boy seeks same

The dad swoops in, whisking his son away from the playground. “We’d better get going!"Moments earlier, my then 2-year-old son had mustered up a weak “hello” for the boy after sticking his tongue out for a solid 30 seconds. It was his typical greeting at the time....more

Chronic Pain In College

“Is college really something kids like us can do?”Those are the words I received in a text message, from a sweet younger friend with CRPS, a few weeks after I moved into my dorm....more

“But You Don’t Look Sick!”

Here’s the thing about some illnesses. They are called “invisible” because you don’t have the experience to see the signs of it. To you the bags under the eyes are overworked, not there because the person is exhausted from just trying to make it out of bed. The grey hair is natural aging, not from the stress of being sick. Somebody rubbing their joints is from doing too much today, not because it’s a vain attempt to make them stop hurting (it never works, by the way)....more

I' m Not Ready!

I know-- you don't have to say it.  It's been three weeks since my last post.  So, where did the time go?  I believe it went somewhere between Pity Party Lane and Procrastination Avenue.  You know that place between feeling sorry for yourself, and panicking because of all the work you let slip by, while feeling sorry for yourself?  Yeah, that place.  That's where the time went. ...more

To the Mom in the Hospital Waiting Room

Dear Mom Waiting at the Orthopedics Clinic with her Kids,It was a hot day. And heat means it's going to be a rough day for my son, Branko.  Summertime breathing was a gruelling task due to all the fluid junk in his chest. I showed up in the waiting room, scanning the area for a wall socket that I could plug his portable oxygen concentrator (POC) into. You kindly moved over so I could have a closer seat. I'm going to be honest: sometimes people, even parents of sick kids, don't move over. Thanks for that....more

Good News, Bad News, and Decisions

 Posted on October 14, 2014...more

Heavy Burdens

Suddenly doing a little traveling by myself has brought some not-so-happy things to the surface for my husband.. On a day I was gone for my friend's birthday, he spent the whole day alone. He didn't have work, the kids were at school, plus the schools got locked-down due to some police activity and they were both late getting home. Most of us LOVE having that much time alone. Some never get that kind of time....more

Complicated Cool

I am a married SAHM of two. My husband has Type 1 Diabetes, is on dialysis and has heart problems. Further, I am visually impaired and my daughter has ADHD. We are your typical “family of 4”….but not.Every single time I type all that out I marvel at what a mouthful it is! It’s a lot, for sure, but it’s our normal.Normal? The older I get the more I accept that “normal” is subjective. One night at dinner I asked my kids what they think of our little family. My 13 year old daughter said that we’re pretty cool, but also complicated. My 7 1/2 year old son simply said, “Epic!”....more