The thing I had no words for is called Li Fraumeni Syndrome. It's an inherited genetic disorder that not only leads to sarcomas, but greatly increases the risk of your child being diagnosed with aggressive childhood cancers. My lineage is less than stellar, so I had been tested at Mayo about eight years ago, and cleared. Rico had never been tested, and in light of his father's rare, (but curable) cancer, and Rico's aggressive sarcoma, we decided to have him undergo genetic testing as well. Knowing that our six year old could be a genetic lottery looser filled most of my waking moments.
Watching Rico struggle is difficult enough. Imagining this little face having to fight the same fight was unbearable.
Two months later, we have an answer. Rico does not seem to carry the gene for Li Fraumeni, so for now, for Yoda, we can breathe a collective sigh of relief.
In light of that, my other reason for writing less seems petty, but we have been sharing nearly everything, so here it is:
I'm sick of people telling me to "be grateful."
This little speech always seems to come from well-intentioned people, or those who barely know us, but are struggling for something to say.
"Consider yourself lucky," they say.
"Be grateful for the time you have," they'll tell us.
Nothing makes me more furious.
Because quite frankly, I am grateful. Rico is grateful. Our kids are grateful. If you look up "gratitude" in the dictionary, it's a picture of us, pointing to a picture of the Dalai Lama, with a bubble above our heads saying, "We have more."
How dare someone imply we are not grateful.
Gratitude is something we have in abundance. We have today. It looks like we'll have some good tomorrows, we understand the relative jackpot we've hit right now. We are so happy to be together, to have more hugs, more smiles, more ice cream nights, more snuggles. Every minute together is a gift.
But can we be real for a second? Our family of five has one driver for three employed people, a minimum of four doctor visits a week, as well as grocery shopping, dentist appointments, trips to the vet, pharmacy, bank and wherever else life takes us. One of us still requires some nursing assistance, another one still requires a babysitter, and two of us never get enough sleep, mostly because one of us is still fighting nightly nerve pain. Much of the stuff that Rico used to do is having to be relearned by the rest of us, not because he doesn't want to help, but because he can't. People assume that because he is home now, our lives are back to normal, but they are not - they are so far from not, and that takes some adjusting.
So some days are hard. They just are. And hearing a lecture about how we just need to suck it up and thank our lucky stars that we exist, just doesn't make them any better.
We are grateful.
We are blessed.
We know this. But when someone tells us that we should be, all we hear is that we have no right to feel frustrated or overwhelmed or even nostalgic for our usual summer adventures. We have no right to cry, or feel stressed or say anything but, "Wow, life's great."
Life is great.
The moments we have together are treasures we are thought we may never have.
But the journey isn't easy, and sometimes well-intentioned advice doesn't always hit its' mark. So that's why I haven't written, but maybe now it will be easier.
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