Diagnosis Day Redux

Yes. It's been a long time since I've blogged. Doesn't mean my mind hasn't been churning.

It's *Diagnosis Day*. The picture below was taken by Roger as they were waiting at the hospital for CAT scan results on January 20, 2009.

I shared our story yesterday at a Synapse meeting, rather unexpectedly. A "teaser" from another member about the Thumbs Up Ball 2018 and the pending anniversary of this date were both combining factors that helped me decide to share the story. This day in 2009 is forever etched in my brain. There are few details that I have forgotten. I remember Roger picking me up from a full morning of teaching at Romp n' Roll after he'd already spent hours with Charlotte at the pediatrician and at St. Mary's for a CAT scan. I remember grabbing a quick lunch from the Drive-Thru of Chick-fil-A, but not really wanting to eat anything. (Not wanting to eat CFA? I know! Right?) I remember using my non-smart phone to call friends and family from the neurologist's office to tell them that we would be admitted that night to the PICU and that a major surgery was (probably) coming soon. I remember Loretta (CJ's godmother) dropping everything at a moment's notice and bringing lovies, crayons, and her wonderful, calming self to the hospital. I remember seeing that HUGE tumor inside her brain and being amazed that she was still even alive. I remember the panic and the pit in my stomach.

And that was only Day ONE of a year that was so incredibly intense, it is difficult to understand how we survived. It was Day ONE of a path that has turned into the legacy of CJ's Thumbs Up Foundation. It has turned into 200 people receiving meals in the hospital every week. It has turned into the payment of electric bills and rent and (unfortunately) sometimes funeral expenses for families who need comfort at their darkest hours.

Thanks for all the love and support you give to us every day. The pain never truly disappears and some days it is more intense than others. This is one of those days.

The Edge of Seventeen

It's that time of year when the blog musings center on my grief journey. Every year, it seems like we are busy with end-of-the-year school activities and the start of summer, planning vacations, and then (kablam)...it's almost July 9. Grief is funny. Grief is weird. I remember very early after Charlotte died, I watched the movie Rabbit Hole. There's an amazingly poignant scene where Nicole Kidman's character is talking with another woman who lost a child over 10 years before (played by Dianne Wiest). She talks about grief being like a brick in your pocket. It never goes away. Sometimes you can even forget it's there. But it comes back and makes its presence known from time to time. And (she says) "it's what you have of them." I probably did not fully realize then what a powerful and true analogy that is. As time goes on, our grief changes. Yet, it is always there on the edge of things. It sits in that pocket and sometimes makes itself known. This...

To everything there is a season

It's been a while since I used the blog to share my thoughts. What started as some random musings turned into much more than a Facebook post. I started writing this over a week ago but it's taken a minute to actually hit the publish button. Thanks for your patience. Welcome back. It has been a week (or two) . One of those weeks where everything happens all at once. A week where things need to happen in a particular order or everything‘s going to go to shit. A week where you just seem to go from one thing to the next thing and you’ll figure out what’s going to happen next as it goes along. A week full of work and family and rest and sleeplessness and it never feels like there’s enough time for anything. But somehow it all works out. A plaque on the library walk in NYC My week started with a trip for work to NYC. It coincided with my birthday. Because of that, I had all kinds of feelings all week about life in general. The week ended with a trip to Florida that, unfortun...

Bittersweet Sixteen

I think about Charlotte every single day. However, this time of year, I'm flooded with all kinds of memories as we commemorate the anniversary of her birth. This year feels like a bit of a milestone. Sixteen. If cancer had not taken her life back in 2010, I have a feeling I would be planning a massive birthday celebration this year. 16 always feels like a landmark year in someone's life. I have been thinking a great deal about the last birthday party we had for Charlotte in 2009. We didn't know it at the time, but we were halfway through her treatment journey. We had been through three major brain surgeries and a few rounds of inpatient chemotherapy. Treatments were not going well. In fact, right after her birthday, we would make the trip to Houston, Texas where we would settle in for about 10 weeks of proton beam radiation treatments and a new customized chemotherapy protocol. This was the unspoken "last chance option" to beat that aggressive brain tumor into ...

I See What You Meme

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