Tonight's picture was taken in February of 2009. Do you know what you are seeing? You could take a guess!!!! This was actually a physical therapy session taking place in the hallway of the pediatric units. As you can see Mattie was leading the way followed by Jenny (his art therapist), Denise (his social worker), Jessie (his art therapist), and a physical therapy intern pulling up the rear. The hand on the left holding Mattie's IV belonged to Anna, Mattie's physical therapist. All of these women are extraordinary and yet three of them who are no longer at Georgetown: Jenny, Jessie, and Anna. I am not sure what we would have done without each of these women. It saddens me that once Jenny and Jessie left Georgetown, there has been NO in-patient art therapy program. Which means the children stuck on the pediatric floor do not have access to such creativity, support, and an outlet to express their thoughts and feelings. Jenny and Jessie found a way to work both in-patient and in the out-patient clinic, but not all professionals share their work ethic, commitment to children with cancer, and their flexibility to work in both settings. Clearly Mattie went to Georgetown for the medicine, but years later, what do we reflect upon? The psychosocial support and connections! Which maybe why Mattie Miracle's tagline is...... It's not just about the medicine!
Quote of the day: Love is always open arms. If you close your arms about love you will find that you are left holding only yourself. ~ Leo Buscaglia
Peter had me laughing today! I was talking about Foundation issues and things to do, and in essence expressing that I seem to be always working. Of course, Peter works a full time job and then helps to manage the Foundation. So he has two jobs in a way. So really I have nothing to complain about, but what made me laugh was the simple fact that he says he doesn't worry about the Foundation because he knows I run it. Meaning I have enough anxiety and worry for two people, so in that respect it takes some stress off of Peter. I am not doing his statement justice, but it had me laughing. There is a lot of truth in jest and if I am focused on something as Peter knows, I most likely do take the stress off of others because I try to absorb a great deal of it myself.
This weekend Peter has put me on a moratorium from work. He says I look like I am fading and if I don't rest, I will get even sicker. So I am taking his advice. Though I made a list of Foundation to dos, I am not doing them until next week.
We did go out to lunch today and at lunch I was crying about one thing or another. For the most part, I am not a crier. When I cry it is usually because I have reached a maximum level of something! In this particular case, I think it is simply fatigue from not feeling well for so long, on top of a headache. A headache which probably would send the average person to bed.
I learned today that it is the birthday of one of my friend's in cancer. This is his first birthday without his son. Though we didn't discuss this prior to today, I had a feeling already what this day would look like and feel like for my friend. Sometimes with grief you just have NO idea what a particular day, occasion, or event will feel like until it happens. Yet once it happens, in a way it clouds all subsequent events. It is hard to break such a pattern when it happens. I can only speak for myself, but because Mattie was diagnosed two days before my own birthday, I have a visceral reaction to my birthday now. I basically don't want to celebrate it and I can even make it difficult for my friends on that day. I am not sure what would help me get over that hump. Perhaps what bereaved parents are looking for are people who almost force us out of our comfort zone on that day, not because we are celebrating ourselves, but because we mean something to someone else, so much so, that we are worth celebrating. As if we need permission to experience a birthday. I am sure that sounds unusual, but this is an honest account of the feelings that swirl around in a parent's head. In any case, I think of my friend as he acknowledges this bittersweet day without his son. The unfortunate part is this is just the first of many other birthdays to come and finding a way to manage this from year to year presents its own kind of challenge. These are feelings and challenges that those of us in the bereaved parent club relate to all too well and thankfully we have each other to chat with, otherwise, it would be easy to think something is very wrong with us!
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