Sunday, December 30, 2012
Tuesday, December 25, 2012
Thursday, December 20, 2012
Eric came up to me last night when I was sitting at my computer and asked me if I had the Christmas spirit. I asked him what he meant. He told me "the parents in Polar Express didn't have the Christmas Spirit, so they couldn't hear the bell ringing."
If Eric had asked me that question a couple of weeks ago, my answer would have been different than it is today. I really love Christmas time. I love the sights, the sounds and the smells of Christmas. Yet, anymore, Christmas seems to be more work than fun. Granted, it probably has something to do with the fact that I'm the parent now, not the kid. But, I'm really tired of lists and "I wants" and the running around so that I can check things off the list. I just want my kids (and everyone else) to be happy about the Season, not the presents under the tree. So, yes, I've been a bit of a Scrooge the last few weeks and not much in the Christmas spirit. I certainly wasn't hearing any bells ringing.
Then there was last weekend. A weekend together as a family, all of us with no worries about housework that needed to be done - because we couldn't go home. No worries about work - because going into the office wasn't an option and no worries about how much money we were spending - because the weekend was paid for. Last weekend was all about enjoying the Season. And enjoy we did! But, the grand finale ... Jack's new room, was the greatest gift of all. It was a gift from complete strangers who gave of their time, their talents and their hearts to make a difference in the life of a little boy. Room for Joy exemplifies the Christmas spirit and because of them my Christmas spirit has been renewed. In fact, I dare say that every time I walk into Jack's room ... I hear the ringing of a bell.
Christmas in the jungle - picture taken this morning
A video of our Room for Joy weekend and Jack's room before and after:
Sunday, December 16, 2012
Given the unimaginable that took place at Sandy Hook Elementary, Newtown, CT on Friday, there is certainly nothing going on in my corner of the world that is newsworthy. My heart feels such sadness for those who lost their lives and for their families who must somehow find the strength and courage to get up each day and simply put one foot in front of the other.
- Lord, make me an instrument of your peace.
- Where there is hatred, let me sow love.
- Where there is injury, pardon.
- Where there is doubt, faith.
- Where there is despair, hope.
- Where there is darkness, light.
- Where there is sadness, joy.
- O Divine Master,
- grant that I may not so much seek to be consoled, as to console;
- to be understood, as to understand;
- to be loved, as to love.
- For it is in giving that we receive.
- It is in pardoning that we are pardoned,
- and it is in dying that we are born to Eternal Life.
- Prayer of St. Francis
Monday, December 10, 2012
I was so proud of myself that I bucked the system and was able to make it happen without the protocol hospital admission. Pride goeth before a fall?
The month wasn't all bad and included a trip to the ball park with my sisters
and the first day of 5th grade
August and September tortured us with 20 days of incarceration in the PICU at Phoenix Children's with a very sick and hurting Jack.
October we hauled our weary selves 1500 miles to see doctors I trust and friends who love us. It was an exceptionally tough week that brought disheartening news about Jack's heart and overall disease progression. The bright side of our trip included a visit with Jack's first pediatrician and someone who stood by my side day in and day out during those many months Jack was in the PICU the first year of his life. We also met up with Jack's former Phoenix physical therapist who we haven't seen in over six years. I was able to fit in dinner with a friend who was the owner of the nursing agency that cared for Jack the first three years of his life; dinner with three of Jack's former nurses (NICU, PICU and home care); lunch with Jack's neurologist; and an evening with friends who share a similar journey as ours. We were welcomed again into the home of our friends David and Amy who, despite all the stuff we bring into their home, never make us feel like we are in the way or overstaying our welcome. There were other friends to see and places to visit, but exhaustion and time limitations kept us from seeing everyone we wanted to see. I try not to dwell on the fact that this trip was likely Jack's last trip to St. Louis. Not necessarily because he won't be here to make the trip, but because of our shift in focus when it comes to Jack's care. The trip was necessary and worthwhile, yet difficult in many ways.