Tonight's picture was taken in August of 2009. As many of my readers know, this red ride-on car was affectionately named "Speedy Red" by Mattie. My parents bought Speedy Red for Mattie because this was something he really wanted. In fact, I used this ride on car as an incentive. Before I knew his cancer metastasised, I told Mattie that he could get such a car if he worked very hard in physical therapy to regain his strength and to relearn how to walk. However, when we learned that Mattie's cancer spread everywhere, only six weeks OFF of chemotherapy, I had to face that Mattie wasn't going to recover, he wasn't going to get rehabilitated, and he was never going to "earn" Speedy Red. Because of the rapid nature of Mattie's decline, there was NO time to fill out an application with the Make-A-Wish Foundation. Instead, my parents helped to make Mattie's last wish possible, and Peter and I executed and assembled the wish! As you can see in this picture, Mattie was quite ill. He needed oxygen constantly and he was very frail and weak. Despite all of these things, he was an excellent driver and Speedy Red did give him joy. Initially when he was learning how to drive, I rode on board with him. Which wasn't easy, because this car was not built for adults. Nonetheless, there was no way I was letting him drive around without help and supervision. He took to driving like a duck to water, and within a day, I gave up control, and he drove independently. Of course there was some risk to this since he had a pain medication pump attached to his central line (broviac) and also had an oxygen tank in tow. I knew Mattie wanted the freedom to drive, and sometimes as a parent you have to weigh your choices, and to me allowing Mattie some brief moments of happiness outweighed the potential risks.
Quote/story of the day: Remember Now by Walter Dudley Cavert
"In the bottom of an old pond lived some grubs who could not understand why none of their group ever came back after crawling up the lily stems to the top of the water. They promised each other that the next one who was called to make the upward climb would return and tell what had happened to him. Soon one of them felt an urgent impulse to seek the surface; he rested himself on the top of a lily pad and went through a glorious transformation which made him a dragonfly with beautiful wings. In vain he tried to keep his promise. Flying back and forth over the pond, he peered down at his friends below. Then he realized that even if they could see him they would not recognize such a radiant creature as one of their number. The fact that we cannot see our friends or communicate with them after the transformation which we call death is no proof that they cease to exist."
My friend, Charlie, sent me tonight's story entitled, Remember Now. This story captures my attention because in a way it is very symbolic of Mattie's life. I would like to believe that Mattie is now represented in the dragonflies and butterflies that have fluttered around me this spring and summer. He has made a transformation, and on some level I need to trust my faith or follow my heart and accept that he exists. Mattie is very much alive in my mind, heart, and in all the beautiful sightings in nature, such as the glorious moon that visits us each night.
I went to bed very late, at 2am to be specific. However, at 6am, I was wide awake. I was jolted awake from a dream. In my dream, I was sleeping, but a noise of some sort woke me up. In the dream, I looked at our bedroom door and I could see that it was slowly opening up, and poking his head through the door was Mattie. Mattie was checking to see if Peter and I were up. In my dream, I distinctly remember being utterly confused, because I was saying to myself, "I thought you were dead?!" Just about when Mattie and I were going to talk to each other, that was when I woke up. However, when I woke up, I could remember seeing his face very vividly, and it felt as if he were in the room with me.
Today was an incredibly long day. I started with a Board of Professional Counseling meeting at 9am. This board regulates the licensure of Professional Counselors in the District of Columbia. This meeting went on for six hours! Some of you may recall that I had a very cantankerous meeting with two officials from the DC Department of Mental Health a few weeks ago. Well these individuals were supposed to appear before the board today. One actually came and the other conference called in. The basic issue that we are dealing with comes down to a pure and simple turf battle. A battle between social workers and counselors. Fortunately after serving in many leadership roles in the field, I am very, very aware of this national debate on the scope and competency of practice. Just like a few weeks ago, today I was relentless. For 90 minutes, I would not let up on our position as Licensed Professional Counselors. We were armed with facts, regulations, and specific information. To the logical mind our case is hard to refute, which is WHY I know this is NOT an issue about facts. This is an issue about inequality, oppression, and irrational thought. One field trying to oppress (this is a harsh word, but a very accurate one!) and discriminate against another. If you want to oppress my field, then at least have the courtesy to do it armed with information, facts, and substance. I clearly could see, as is typically true in these situations, that their case had NO merit. Yet they are impacting the livelihood of every professional counselor who works for the DC Department of Mental Health. I was spare you more details, but for 90 minutes I was on fire. I was thinking clearly, speaking factually and passionately, and because the social worker who was addressing the board by phone was so disrespectful and impossible to reason with, I literally told her that her participation was becoming counterproductive and told her we were disconnecting her from the call. I literally picked up the receiver of the phone and hung up on her. Her legal counsel in the room could understand that I wasn't going to be walked over, have the board disrespected, and allow this person to talk over myself and everyone else on the board with misinformation. I typically am not that bold or aggressive, and try to work collaboratively. But if you cross the line, which happened numerous times in this meeting, there are consequences. After this 90 minute firing squad was over, I was physically and emotionally drained, and yet we had other cases to hear!
I felt good about how I handled the situation, but that took a great deal of energy, and it does takes its toll out on me. I began to feel very cold in the meeting and began shivering. All physical signs for me that I am beginning to shut down. But I certainly couldn't, I had hours more to go! I did pull it together, and I always find it funny how people comment to me after one of my tirades how amazed they are with my ability to defend a position. Always nice to get that feedback from the board, who I feel is comprised of very knowledgeable and committed mental health professionals.
I eventually made it home this afternoon. Originally, I thought the meeting would be over by 1pm, and therefore I had plans to spend the afternoon with Ann and Mary. That never happened since I got home at 4pm, and was exhausted. Peter and I went out to dinner, and I shared my day's adventure with him, and I heard about his day. Peter met Robbie for coffee today. Robbie was one of Mattie's favorite volunteers at the Hospital. Robbie is a very bright, energetic, creative, and empathetic young man, who we had the good fortune of meeting through Brandon (Mattie's big buddy). We are looking for ways to get Robbie connected to the Mattie Miracle Cancer Foundation and I look forward to this opportunity to continue working with him in this capacity! Those who attended the Mattie March in 2009, may remember Robbie. Robbie and Brandon literally pushed Mattie's wheelchair around the track and engaged Mattie and helped him connect with his friends that day. By that point in time, Mattie had become very sensitive to being in crowds and around people, but being surrounded by Brandon and Robbie served as a protective buffer for him when Peter and I couldn't be by his side that day. Another memory of kindness I will never forget!
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