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Even miracles take a little time. – The Fairy GodMother, Cinderella

Morning love

There is a Lupus walk this weekend for our Lupus charity of choice, but our family won’t be there.

Don’t get me wrong. I would love for you to donate to the Lupus Foundation of America. They rock. They rock hard. And whenever we can, we send them money. We also encourage our friends and family to walk, donate…do what they can. Just this past weekend my beloved in-laws walked in my honor in Fayetteville, North Carolina’s walk. It was emotional for me.

We support the Lupus Foundation 110% and I’m even working to get members of Congress to join the Lupus Caucus at the foundation’s urging.

With that said, there are times my family and I just need to forget the hell that is what we have been through. Come Monday, I will be back in treatment, so we can never forget for long. But there is always a walk. There are always donations needed. There is always the constant reminder that our lives have changed.

So this time around, we’re not going. Aaron isn’t running. In fact, he’s run in one Lupus related 5k just after my diagnosis but that’s it.

Regardless, we’ve decided to spend this weekend at Disneyland. This is one of those times where I’m lucky to be a blogger, and have been invited to check out Mickey’s Halloween Party for what will be the… 5th? 6th? year in a row? Could it possible be that long? And then we’ll stay, as guests of Disney, so the following day we can check out the new Carsland. And then we’ll stay again, as guests of a friend, so we don’t have to brave Carmageddon 2 and can lounge by the monorail themed pool and then eat some Mickey shaped waffles for breakfast…in bed of course, as I am the Queen of all things room service.

Part of living with a chronic illness is understanding it’s chronic. That means I refuse to be Lupus 24/7 and my family shouldn’t have to feel obligated to walk every single walk or be at every single Lupus related event.

Yes, it’s very important to us. Yes, I want to raise as much awareness as possible. But I think I do a good job of doing my fair share.

I also think we’re allowed to take a break, just once in a while, from the drumbeat of illness. Never fear, I’ll be back with an IV in my arm on Monday. It won’t last long.

But until then…please, just until then…give me my rest. Let me pretend. Let me make-believe in a place made for make-believe.

Let me dress as a pirate and giggle with my fake bottle of rum and whistle for the dog to bring the keys to unlock the cell. Let my children laugh and jump with excitement as the fireworks blast overhead, begging to have cotton candy for dinner and  turkey leg for lunch. Let my husband find joy in the smiles of his family as we plot Splash Mountain vs Big Thunder Mountain Railroad and experience Radiator Springs for the first time.

Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye. – Peter Pan

Comments

  1. Have an AMAZING time at Disney! That’s what your life *should* be about.

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