Just a quick little ditty that I hope will light a fire under my butt… and hopefully yours. This was one damn long winter and planning The Princess Ball and single parenting for most of it (hubby works away from home) left me tapped right out. I have barely caught my breath and now it’s on to The Great Strides Walk…. and I don’t feel like it… the truth is I’m tired… physically and emotionally.

You have to develop a pretty thick skin when your kid has a disease like this…. you have to cling to the dream that the HOPE you hold in your heart will always be enough for the DESPAIR that sometimes takes ahold of your guts. You have to understand that when someone says “No” to supporting your cause they are not saying “No” directly or personally to your child…. truth? This is really hard to do sometimes. Especially when you’re in this arena as deeply as we have committed ourselves… we spend almost the entire year asking someone – anyone for money, support, prizes, promotion… anything they are willing to give.

You have to develop a pretty thick skin when you choose to fight the way we do… we see it all, we hear it all. We know about the families who suffer greatly because of this disease … we know them and we love them like family because we are in this together. We pray hard with every medical test, surgery, hospital admission. I cry like it’s happening to me when I read the other Mama’s posts about their tired aching hearts. They don’t know how much more they can watch their child endure. I don’t know how much more I can watch these families endure…. on days like today it takes all of my grown-up energy to stay plugged in…. to not just tune it out and turn around and walk away.

But you know I won’t.
I’m here.
Fighting hard.
Crying with all of you.
Praying with all of you.

Hoping with all of you.

All of this is another great lesson in finding balance in your life. Not giving 100% all of the time to this cause is not a reflection on what kind of mother I am or my level of commitment – it’s acknowledging that I do… that we all do the best we can with what we have.

I am VERY aware that Rowan starts kindergarten in the fall and this precious time just the two of us while big sister is at school will soon be no more… it would be pretty ironic if I sacrificed this time to raise money for the disease she has now wouldn’t it…. it would it some ways negate all of the lessons that our fate has taught me. To be in the moment sometimes you have to be mediocre at some things. To be spectacular at one thing sometimes you have to mediocre at some things.

I’m going to choose mediocre fundraiser and spectacular Mom for right now 😉

But I will NEVER give up HOPE ❤



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