This is What An Invisible Disease Looks Like

mom boys disability epidermolysis bullosa

This is what an invisible disease looks like.

It looks like nothing at all.

There are thousands of them and they run the gamut from rare to common, physical to mental, life-threatening to debilitating. But they all have one thing in common – they leave no noticeable mark. To the outside world, we all look healthy.

Mine, and my children’s, is called epidermolysis bullosa, a rare genetic disease whose hallmark is debilitating blistering of the skin in response to heat, friction, injury or rubbing. I was encouraged to write something about it today for Rare Disease Day but, truthfully, I didn’t know what to share. Read more...

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Thankfulness

Tony Bennett UVA basketball

It is hard to watch your children do something that you know will hurt them, even if they love it more than anything in the world. It is hard to allow them the space to make their own choices, even if you know how those choices will turn out.

But a big part of parenting is doing just that. We spend so long believing that the hardest part of parenting is holding on.

Holding on to a newborn you are sure is going to slip from your clumsy hands. Holding on to your sanity as you fumble through the day on no sleep. Holding on to a spoon, slippery with mushy peas. Holding on to a toddler’s hand as they take wobbly steps. Holding on to art work and memories of misspoken words. Holding on until they are just a little older. Read more...

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Passion

June 16, 201406 14 14_2152

In the course of your life, there are certain moments that you remember as clearly as if they happened yesterday. Some are big moments, but most of them are small.  And this weekend, at Tony Bennett Basketball Camp, was one of those moments for Jack.  And for me.

But not for the reason you think.

Despite his most fervent desire, the idea that Jack would even be able to attend a college basketball camp was a stretch at best because of a rare disease no one has heard of (for more read here).  But this one – 2 half days with parents in attendance – seemed like the best shot we’d ever have to give him this dream.  Way too often in my younger life, I preemptively said no to things that I suspected I couldn’t do.  And that was the safe thing to be sure.  But I also regret that I didn’t just try some things, even if they would have ended up with me unable to walk for days. Read more...

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It’s not the size of the dog in the fight, it’s the size of the fight in the dog

It’s that time of year. The warm weather spells a deathknell for all sorts of fun for our family. Warm weather means blisters. Lots of them. Warm weather means the carefree running around that the boys and I enjoy in the cold must be once again shelved until the winter months return. When it’s 90 degrees, even walking through the parking lot causes blisters.

I can handle it. I know my limitations. I know when to say “no I can’t do that” – even if I really want to. I know how to be okay with being different. I know that it made me stronger – even if it hurt in the process.  I know how to compartmentalize disappointment and pain.  I’ll survive. Read more...

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