It’s not all about us

And this is how the day started.  With thoughts of Friday.  Never a good way to start the week.  I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time. 

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street.  As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else.  I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus.  UGH!

Pretty much that sums up how the day continued.  There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time.  And I don’t claim to be free of frustration.  Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view.  I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes.  And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it.  Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true.  I look at my grandparents, still married  – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out.  I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often.  So many people could learn life lessons from my grandparents.  They are role models to be emulated in so many ways.

Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease.  Cowden’s Syndrome or any other are not prerequisites for compassion.  You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here.  No major new doctor news.  The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her.  The joint pain is returning, slowly, one spot at a time.  It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week.  Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain.  We go to the eye doctor in 2 weeks.  The cardiologist is the beginning of December.  He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart.  Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules.  That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..)  But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think.  While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure.  I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th.  And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out.  We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child.  She sees a lull in doctors as an opportunity to spend time helping others.  There has to be a bunch of lessons there.

Take a minute to breathe.  Time passes so quickly.  Hug a loved one.  Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

3 thoughts on “It’s not all about us

  1. Even though it’s not all about us…and we need to focus on other things, sometimes…I feel it DOES need to be about US. About YOU. About your amazing daughter. What YOU need. What she needs. And that is OK. Children teach us things we could NEVER imagine….I see that in your daughter. I see that in my nephews. I see that in the children I’ve been working with (young and old)….I’m so glad we are connected here in our blogs. 🙂 ❤

    Does that make sense?

    • It makes sense, but that place where it’s all about me is an ugly place. I can only stop by and visit – can’t stay there long. Too many people worse off than me. Too many things to do. My girl plans to changethe world, and I need to be ready to facilitate! 🙂

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