Tonight's picture was taken in July of 2009, about two months before Mattie died. I do not typically show close ups of Mattie's legs, but as you can see Mattie was emaciated. He really wasn't eating or drinking ANYTHING by this point. Some times I wondered how Mattie survived on a day to day basis. I am sure the IVs we gave him at home helped and whether we wanted to be or not, we became proficient in managing his day to day medical care. Every thing from broviac dressing changes (which were an absolute nightmare), pain med manageable, anti-emetic administration, the administration of oxygen, and the list went on and on! As you can see from this photo, Mattie was our helper! He was a very good painter and that summer, like many before that, he helped us paint the deck. Mattie was my kind of painter..... he paid attention to details and was neat!
Quote of the day: That was the thing. You never got used to it, the idea of someone being gone. Just when you think it's reconciled, accepted, someone points it out to you, and it just hits you all over again, that shocking. ~ Sarah Dessen
I began my day with zumba class. Today's class was the last one until later in August. For me, this is a great way to start the day. I love our teacher and she attracts a lovely group of women to the class. In a way it is therapeutic for me to jump around, hear music, and socialize with people. Funny how one thing can accomplish so much for me in one hour!!!
Later in the day, I went to get my hair cut. I have been going to the same hair stylist for YEARS. I have followed her around DC, until she opened up her own salon. Celina knew me before I had Mattie, then while I was pregnant, was a mom, and then of course throughout Mattie's ordeal. Each year, Celina's salon comes to the Foundation Walk and sets up a nail art table, and Celina's daughter today mentioned how they have ideas for expanding services for next year's Walk. Over the years I have gotten to know Celina, her sister, her husband, and her daughter. I am absolutely honored that they are moved by our cause and want to help Mattie Miracle. While chatting with Celina today, she asked me how I do all that I do and not become depressed myself? An excellent question! However, since she is a lot like me, she understood my response. The response is I am not good at taking care of myself, but I do find a level of satisfaction and purpose from helping others. It is through helping others that I find ultimately I am helping myself.
This evening, Peter and I are managing through the heat. Our complex lost air conditioning and I am hoping it returns soon. Somehow the heat has gotten to me tonight. I am meeting with my doctor tomorrow to finally go over the MRI results, a test I took weeks ago! Don't get me started on the state of the medical community. In so many ways it needs an overhaul and from my perspective it begins with medical training. Something goes very wrong from learning about the practice of medicine to the implementation of care. Doctors forget that patients are human, we have emotions and feelings, worries and fears! It gets tiring to have to constantly educate these folks, but if you are going to be my doctor, one should get ready for the lecture. Because tomorrow I assure you my doctor is getting one!!!!
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