Tonight's picture was taken in August of 2009. That evening, Mattie went to the mall (after hours.... when stores were closed) to meet with expert Lego master builders. Mattie had the store all to himself. It was a wish that Mattie's child life specialist arranged. Since Mattie was a huge Lego fan, and we literally constructed all the Lego kits in the store that year, the Lego builder masters worked with him on a Mattie inspired project. Mattie chose to build a yellow NYC taxi. Mattie visited NYC twice while undergoing experimental treatment and the yellow taxi caught his attention. To this day, I have Mattie's yellow Lego taxi in my office.
Quote of the day: I stand in front of the mirror and study my face.…It is the face of a sad, lonely girl something bad has happened to. I wonder if my face will ever look the same again, or if I’ll always see it in my reflection. ~ Jennifer Niven
Yesterday, on the 15th anniversary of Mattie's death, I received a message from an incredible professional I have had the opportunity to work with since 2011. I remember meeting Lori for the first time, it was about a year after Mattie died. At that time, so many childhood cancer advocates were talking about the medicine/research, and we were talking about the social and emotional consequences of cancer. It almost felt like we were talking a different language from other advocates and researchers. Which is why, when I met Lori, I immediately clicked with her. We understood each other and we talked the same language! We have been on a path together....... creating, publishing, and now implementing the Psychosocial Standards of Care.
Last night, I noticed that my dad had a black and blue mark on his lower spine. This explains why he has been complaining of back pain and is moving VERY gingerly. My dad is a physical challenge on a good day, but now with a back ache, all I can say is WOW! I literally have to put my arm under him to help lift him up, which isn't easy as he weighs 185 pounds. The problem is I do not know how he injured himself and frankly NEITHER DOES HE! The next issue is he can't take Advil, because he is undergoing another kidney stone procedure on September 18, and this is one of the meds they want him to stop taking ten days before the lithotripsy and ureteroscopy. Honestly Tylenol isn't cutting it. He just so happens to have a rehab medicine appointment on Wednesday, and I am hoping this doctor can help us.
This morning was a show. While dropping my dad off at his memory care program, I was getting multiple calls. One was about my car, which has been getting serviced since last Wednesday. I told them they had to figure out what was going on because I did not feel safe driving the car. The team did an excellent job and my car was returned today. All I can say is the extended warranty for service on the car has been worth it, especially since my car is so OLD. I then went to my doctor's appointment, which wasn't far from the house. I see this doctor once a year to check my skin for any signs of cancer. When she saw me, she asked how was my summer and did I go on any trips?! An innocent question and one that makes small talk. I spared her what is going on in my life, because it wasn't her business. But I did tell her with caregiving around the clock, that I do not get a chance to get away. She understood and mentioned how lucky my parents are to have me. Perhaps!
I have been separated for almost a year now. Have things gotten any easier? NO! In fact, I would say each day I wait for the next shoe to drop! The past two weeks, I have been bombarded with emails, letters, and phone calls. Many of them are fraudulent in nature. Which is disconcerting. Now whenever I get a correspondence, I hate to say it, but I view it as fraudulent first, until I prove that it is legitimate. I waste more time digging, investigating, and verifying. It is exhausting. If this was the only thing I did all day, that would be one thing, but I am juggling a circus show, literally and figuratively. Don't get me started with EZ Pass either. I have had a defective EZ Pass for several years now. I finally had it today and decided to buy a new one, register it, and then figure out how to return the old one to the service center.
Given all that I do each day, I wonder how I could possibly do anything else. There just isn't a moment in the day even to breathe. It is stressful and frustrating. If I was balancing all of this with my husband, that would be hard enough, but we would be doing it together. Sharing the load and supporting one another, to me is what life is all about. Now doing all of this alone is plain and simply heartbreaking.
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