Wednesday, May 9, 2012

Wednesday, May 9, 2012

Tonight's picture was taken in May of 2009. We had a family dinner at Charlotte's house, and that particular evening, I renamed Mattie, "The Kissing Bandit." Mind you Mattie couldn't really walk and forget about trying to run, but he was motivated to catch up with Charlotte and kiss her on the cheek. I am not sure Ellen (Charlotte's mom) or I would under normal circumstances have appreciated this behavior. But given the situation, we all landed up laughing and admiring the special friendship Mattie and Charlotte had with each other.  

Quote of the day: Our lives improve only when we take chances... and the first and most difficult risk we can take is to be honest with ourselves. ~ Walter Anderson

In the Fall of 2007, Mattie entered kindergarten. At his school, they had weekly chapel on Tuesday mornings. I made it my priority to get to chapel each Tuesday, because my primary goal was to see Mattie, but also begin to understand the culture of his school. Anything that involved Mattie, therefore meant that I was going to get personally invested in it. I spent all of Mattie's life advocating for him and assessing situations and those around him. I was practically conditioned to do this given the sensory and other challenges he faced as a baby through his toddler years.

Each Tuesday in chapel, I sat between two women. One was my friend Junko, and the other was Luda. We were a threesome, and every week we convened, caught up with each other, and observed what was going on in chapel. Sitting there over the course of a year, our friendship grew. Though I no longer attend chapel, I still am connected to my chapel mates. Today, I went to visit Luda. Luda and her husband own ABC Imaging, which is a graphics and printing company that graciously creates all our Walk posters for FREE every year. They have created our banner, research posters, faces of hope posters, and the list goes on. My connection to Luda was started by Mattie, and it is thanks to Mattie, that Peter and I have wonderful companies like Luda's to turn to for help as we plan and host a professional Walk.

This evening at 6:30pm, I had a follow up MRI at Georgetown Hospital. It is never easy waiting for the results of a scan, especially when we have memories of ALL of Mattie's horrible scan results. I had a busy day of walk planning, and so by the time I got to the Hospital, I was exhausted. My MRI requires contrast, yet they had a hard time finding a vein and starting an IV. This is not unusual for me, since I have been told my veins are impossible to find even under the best of circumstances. After being stuck once unsuccessfully, my tech called in the cavalry for help. I appreciate that rather than being a pin cushion. I was then turned over to my MRI tech, Tony. Tony worked with Mattie OFTEN, and Tony did my last MRI. So we understand each other well. Today's hour long MRI made me lightheaded and dizzy, and thankfully Peter was with me, because I couldn't possibly drive home. With a pelvic MRI, you have to hold your breath for 20 seconds multiple times within an hour scan. So between being tired, lying flat and still for an hour, and holding my breath, I was a mess for a while post-scan. In the midst of this, I had Linda (Mattie's Child Life Specialist) and Dr. Shad (the chief of pediatric oncology) checking in with me. I am not their patient, but yet they are crucial parts of my support system even today.

When I got home, my mom's friend, Diane, sent me an amazing care package from California. I have only met Diane once, but it only took one face to face visit, to recognize what a special lady she is. Diane is a faithful blog reader, and has been reading it for years. The package was filled with tea, fresh fruits off her trees, and CHOCOLATE. I mean special chocolates, which as I told her were VERY needed since under stress, I turn to chocolate and sugar to survive (a skill I mastered while Mattie was battling cancer). I have one more week of Walk planning, and with these special treats in sight, I know I can make it through.