Tonight's picture was taken in May of 2004. We took Mattie to the US Arboretum, and he was intrigued by the pond filled with huge koi! We bought some food for the koi, but Mattie really did not want to feed them. He was instead fascinated by watching them come to the surface, open up their big mouths, and ask for food from me.
Quote of the day: Grief has limits, whereas apprehension has none. For we grieve only for what we know has happened, but we fear all that possibly may happen. ~ Pliny
Tonight's quote is brilliant. It is brilliant because grief and apprehension go hand in hand. Once you have experienced a traumatic loss, it becomes hard not to live your life with great apprehension. Which most likely explains why Peter and I have been besides ourselves over his illness the past couple of days. Today was NO different, it was another difficult day. Peter is still not feeling well, and continues to be dizzy and have nystagmus (involuntary eye movements). Mind you I feel like we are playing to beat the clock, because on Friday of THIS week, Peter is scheduled to fly to Africa for two weeks on business. I have great hesitation about this trip especially when he is ill, and we don't know the cause of his symptoms.
I spent the entire day trying to make an appointment for Peter to see an ear, nose, and throat doctor. I honestly would never have imagined this to be so difficult, but I learned today ONCE again, that the worst thing on earth is to become physically ill! I find interfacing with medical staff over the phone, to make an appointment to see a doctor, harrowing. Half the time, the person on the other end of the phone isn't listening, or simply doesn't care what you are experiencing or trying to convey. This always amazes me, since the person who answers a doctor's office phone leaves a lasting impression on the patient. In fact it can cloud my whole impression of the office. Today, as always was no exception. I spent over 8 hours on the phone advocating for Peter today.
Later this afternoon, when I could see the first doctor I was trying to connect with wasn't going to work out, I sent Dr. Aziza Shad a text message. As my faithful readers know, Aziza is the director of the pediatric HEM/ONC division at Georgetown University Hospital. She is also the doctor who was with us the week that Mattie died. Aziza is NOT our doctor, however, whenever I have some sort of problem, I text message her. NO matter where she is in the ENTIRE world, she instantaneously responds back to me. When she got my message today, she immediately called me. The first words out of her mouth were..... "are you okay?" She understands Peter is the one who is sick, but she also has the sensitivity to understand that illness for Peter and I at this point in our lives is traumatic. Needless to say, after I told her Peter's symptoms she hung up with me and called Georgetown's Otolaryngology department. For the rest of the day, I have been working with this department to find a time for Peter to be seen. I have no idea what Aziza said to this coordinator I am working with, but this woman is understanding, knows that I lost Mattie at the hospital, and also understands the time pressure we are working with Peter's travels.
Why am I telling you this? I am telling you this because how people in doctors' offices interface with patients is very important. Being treated like you don't matter and are not being listened to is not helpful when you are dealing with a medical issue. I remember Mattie's favorite CT tech, Jey, once saying to me.... people working at a hospital should NEVER forget why they are there and most importantly that they are lucky enough at the end of the day to be healthy enough to go home. Jey always felt it was important to give 100% of yourself to the patients you work with, because that emotional connection can make a night and day difference for the patient. SO TRUE! His comment remains with me today.
I remember when Mattie first started treatment I would hear other patients raving about Aziza Shad. I of course hadn't experienced her yet, but I naturally absorbed all the comments. I want to assure you that Aziza is a busy professional, she isn't sitting by her phone waiting for my text messages. But what I learned quickly about Aziza is that once you are connected with her, this connection remains. Her level of commitment to her patients and their families is incredible, and she literally will answer phone calls at all hours of the day and night. Needless to say, she text messaged me throughout the day because she wanted to know that Peter was taken care of and received an appointment. I am one of the lucky ones who have people within the medical community to turn to for immediate help, but even with help today, it was a harrowing experience. My heart goes out to those without connections and for people who are unable to advocate for themselves. Something continues to be profoundly wrong with our healthcare system, and if you think I am wrong, just wait until you really need to see a doctor, and then I imagine tonight's blog posting will immediately come to mind.
In the midst of all the hours spent on the phone today, poor Peter is still home and suffering with dizziness and eye movements. This is what kept me motivated to get this resolved. I needed a creative diversion today, otherwise I wouldn't have managed the day. As many of you know at the end of the month and into April, I will be working with Donna's (one of kindergarten teachers at Mattie's school) class on several Matisse and Picasso art projects. During one of the sessions, I will be introducing the children to Matisse's beautiful and colorful "cutouts." So today, I worked on cutting out HUNDREDS of shapes from pretty origami paper. Children will use these shapes to create their own "cutouts" in class.
However, Matisse's extraordinary creativity would not be dampened for long. “Une seconde vie,” a second life, was what he called the last fourteen years of his life. Following an operation he found renewed and unexpected energies and the beautiful Russian-born assistant, Lydia Delectorskaya, to keep him company. Vast in scale (though not always in size), lush and rigorous in color, his cutouts (an example of such a cutout is on the left.... it is entitled, La Gerbe [a bouquet]!) are among the most admired and influential works of Matisse's entire career.
Matisse generally cut the shapes out freehand, using a small pair of scissors and saving both the item cut out and remaining scraps of paper. With the help of Lydia Delectorskaya he would arrange and rearrange the colored cutouts until he was completely satisfied that the results. It took two years to complete the twenty collages and, after years of trial and error, a practical and appropriate method was agreed upon for bringing the collages to life as two-dimensional works.
After having cut the shapes, the second part of the creative process entailed pinning the cut pieces of paper to the walls of his studio, which created a paradisaical, garden-like world of organic shapes that resembled algae, leaves, seaweed, and coral, shapes recalling patterns that appeared in many of Matisse's earliest works, which floated atop brilliantly colored grounds. When the desired balance of form and color was achieved, the finished composition was glued to some type of support such as paper, canvas, or board.
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