Thursday, April 19, 2012Tonight's picture was taken in August of 2009. Linda, Mattie's Child Life Specialist, planned this special evening for Mattie and Ann's daughter, Abigail. Mattie and Abbie were able to go to the Lego store after hours, when the store was closed. They had the whole store to themselves and could build anything Mattie wanted. Literally any Lego Kit. The ironic part was Mattie had and built almost every kit in the store, since this was our form of therapy within the hospital. Legos kept us busy, sane, and talking to each other even under the worst of circumstances. Which is why Peter and I are very fond of Legos. Linda approached the Lego store at the mall and told them about Mattie and about his terminal status. In a way, this was like his one last great adventure, though none of us could bear to think about it that way. As you can see from the picture above, Mattie used his wheelchair to maneuver around the store and secure the Lego bricks that he needed. Mattie decided instead of building from a kit, he wanted to build a NYC bright yellow taxi from scratch. The wonderful Lego team within the store mobilized forces and assisted Mattie and Abbie in this endeavor. This wonderful and one of a kind yellow taxi still sits in our living room today.
Quote of the day: Health is not valued till sickness comes. ~ Dr. Thomas Fuller
I spent the majority of the day working on Foundation items. Mid-day I got out of our home and went back to the Mattie Miracle post office box. As soon as I walked into the post office, my favorite postal worker greeted me and told me everything was back on track with our mailbox. Music to my ears! I personally thanked him because if it weren't for him the problem would never have been corrected! Don't you know it, as soon as I went to the mailbox, I found more raffle donations inside. Carolyn (our Walk raffle chair) and I are almost laughing now. At first I worried we wouldn't have enough items, and now this couldn't be further from reality!
This afternoon, I went through the walk website that Peter generated and edited it and we made sure it was up and operational. We are now one month away from the third Foundation Walk, and with that it means the start of promotions and advertising. If you would like to see our Walk website, click on the link below, or the "Love of Family" logo on the top of the blog!
https://www.mattiemiracle.com/Home.php
On Friday, I head back to Georgetown University Hospital to give a parent testimony at Medical Grand Rounds. I did this last year, and was asked to participate again. My testimony consists of a 10 minute presentation about the importance of family centered care. This is done in the context of caring for Mattie and my observations of what worked and didn't work through our journey at the hospital. The attendees are doctors and other medical personnel. My verbal testimony is followed by the four minute remembrance video of Mattie that is posted on the blog. Last year's testimony was a very good experience for me, but I have found with my level of exhaustion that it impacts my mood and outlook on things, people, and events. After Grand Rounds, I will be meeting up with Linda (Mattie's Child Life Specialist) and donating all the items that were given to the Foundation in honor of Mattie's 10th birthday. My trunk is filled to capacity, and I have no doubt that all these wonderful gifts will be very much appreciated by families living within the pediatric units.
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