Christmas

posted by Mary Lello, Wednesday, December 9, 2009, 4:45 AM

Christmas has always been my favorite holiday. It will forever be tainted now, of course. December 25, 08, Jim is acting very strangely and pictures of me from that day show a pretty strained 'smile'. December 26, 08 - seizures at 5:00 a.m. I didn't really know what they were or what they meant but I shall forever be able to recognize a seizure now. Dec. 27, 08, Blue Hill ER and a CAT that shows "something" on Jim's brain. Dec. 29, 08, Jim's surgery at MMC and the discovery of a whole new vocabulary and the start of an entirely different life.

And as we approach Christmas '09 Jim is still here . He's a fighter. Donna and Stacie had talked about trying to gather somewhere and share Christmas together this year. This discussion started back in September and I didn't entertain it too much as the cost of flying financially, physically and mentally felt over-the-top impossible for me. Jim, however, has wanted to get back on a plane since last January. I'm not kidding!

I would engage in the discussion but I really had it on the back burner ... far back! Then in Oct. an angel appeared and gave me an envelope and with tears in her eyes said "please just except this gift. Please just stash it away and use it for when you and Jim can go do something fun again. Please!" And with tears in my eyes, I accepted. And I swear if she had not said to use it for something fun it would have gone into paying bills ... but an ah-ha moment occurred and I thought "plane ticket?".

First over-the-top impossibility just got solved. OK then, where should we go? California? Colorado? Hawaii? (yes, this had opened as a possibility at the same time but it just wasn’t going to happen for December). Donna and Mark were saying to Stacie and I that we should all just gather at their house in Glenwood Springs, CO. Tickets to Colorado were now do-able, traveling there however felt incredibly challenging. The bottom line was, I would NOT travel alone with Jim. He’s stronger and more independent now, but I could not envision trying to navigate an airport, baggage, tickets, security and all of this with Jim by myself.

First step was to see if our friends, the Jalberts, in Evergreen could let us land there for a night as they live only 45 minutes outside of Denver. Well, these dear friends could do better then that. Greg is returning to Maine the week before we leave to visit with his daughter in Portland and then he will fly back out to CO with Jim and I. Donna and Stacie drew straws to figure out who would fly back with us to Maine at the end of the holiday. Donna got lucky (I hope this is how it feels?!) and she will help me with Jim on the return flight and then spend the New Year weekend (which also includes her brothers birthday) with us in Maine before she flies back home to Colorado.

HOLY FLIGHT PLANS BATMAN!!! We're going. We are heading to the lights that the Jalberts have strung all over their mountain home for us, to the "real" tree that Donna and Mark will get this year for the family gathering, to the mountains that make my heart soar whenever I get to gaze upon that big sky and those 14,000 foot snow capped peaks and Jim is getting out of Dodge - something he hasn't done in over a year and he has been itching to GO!

This feels so healing for both of us.

One of the things that attracted me to Jim from the very first time I met him was his thirst for life. His ability to grab life by it's tail and just hang on for the ride. His incredible playfulness and big kid attitude to living. All of you on this site know this Jim too and this may be what attracted you to him as well. I keep telling Jim that even now, with life so different and all it's extreme challenges (yes, this is a nice way of putting it) we still need to grab that tail and hang on for the ride! We need to live life to it's fullest - especially now! And this trip to the mountains feels like the first step to reclaiming this part that we both have lost over this past year.

We are still waiting to hear from Dana Farber in scheduling an MRI down there with them. This MRI will be the first step in determining if that tumor is changing and if we can even be considered for the XL184 trial. We're hoping the MRI can be scheduled for the week we get back from CO but who knows.

I shall keep you all posted regarding this.

Loving you all back,

Mary