Monday, January 27, 2014

Keeping Warm and Catching Up

With the kids home from school for the past two months it has been hard to do much writing, or much of anything, except make hot chocolate and wrestle to get the remote control (to hide).  Today is the first day that I am optimistic that the kids MIGHT be in school for five days, weather-willing.  I pulled out a pile of paper that had been calling my name, and started to work on reducing the stack.  Then an e-mail came in from Snapfish, reminding me that I wanted to get copies made of a few recent photos.  Two hours later I had downloaded 1,300 photos.  That was not my intent, but that is another story.  Well, if you Give a Mouse a Cookie...the story goes, and I ended up looking through too many of these 1,300 photos.  Don't worry, I won't make you do the same, I know your time is precious too.

But just a few.  These were taken in Georgetown on March 3,  2010, when Clay was 4 and Grace was 7.  Clay had been diagnosed a year before, and I think I was in still in shock, alternating between feeling like the worst possible thing had happened, but also feeling like we would get through this unscathed.  Now I look back on these photos and think, at least in part, what happy days these were.  Then, I had no idea how resilient we would have to be, and I had no concept of how strong our will to survive is.  Since these photos were taken I have learned that today could be the best day.   A few summers ago I was sitting at the beach watching Clay float around on a raft in the ocean.  It was a rough summer as his tumor was growing, and he was suffering bad headaches and nausea.  My friend sitting with me said, "What if this is the best you have?" I remember being shocked that she said that to me, and feeling angry that she thought that was a possibility.  Now I realize that that was a brave and a wise thing to say to me.  A reminder to savor each day.

Four years later we have new challenges to overcome, but we are grateful every day for how well Clay is doing.  His energy is good, and he has been focusing hard on learning to read and write in braille.  
Miraculously, he continues to see in his heart what the rest of us sometimes forget to notice.  On Christmas night, Clay said to me, "Mom do you know who would have thought this was the best Christmas ever? Grandpa Ed." 
"Why? Why this Christmas, Clay?" I asked him.
"Because I got so many cool models.  Grandpa LOVED models!" 
Grandpa Ed, who died when Clay was 5, was an exemplary model builder. 

On the medical front, Dr. Raabe and the researchers at Johns Hopkins are continuing to publish news of their work on low-grade gliomas.  Here is another recent update from his group:

We will be attending a special fundraising event in February, "Belle Notte" to support pediatric brain tumor investigations at Children's National as well as the pediatric developmental neurobiology initiatives at the National Brain Tumor Society. A main goal of both of these groups is to find therapies to help children survive their brain tumors without devastating long-term side effects from their treatments. Clay's doctor, Dr. Packer, will be calling Clay and several of his other patients up for a special recognition at the event. 

Time goes by so quickly.  I am going to take our dog Pearl's advice and go find a warm spot by the fire.