Tonight's picture was taken in March of 2009. I honestly can't recall where this hat on Mattie's head came from. It may have been given to him by Linda (Mattie's childlife specialist). The beauty of this hat was it came in many pieces, not unlike a Mr. Potato Head. Mattie got to construct and design his own hat, by adding pieces to this snapping in plastic system. I loved the crazy concoction that Mattie designed, and only he could get away with wearing it! To me this photo highlights Mattie's whimsical nature despite being wheelchair bound and physically ill from chemotherapy. I assure you there was a lot to be unhappy about, but if you worked hard to engage Mattie, he normally gave in, and in the end he was always the life in any hospital room.
Poem of the day: Words by Charlie Brown
It's your "new normal"
You should be "moving on"
These words seem to be
Part of a big con
What sort of normal
Can there be
When the physicality of a boy
Is replaced by a tree?
Or moving on,
On to what I say,
When I'm so sad
I can't think, let alone pray.
There are lots of these phrases
But they're not helpful to me
They don't tell me how to stop hurting
Or cease my crying you see.
What does seem to help
For a while at least,
Is have a friend sit and listen
That gives me some peace.
So for those who can do it
I want to say
Thanks for your kindness
You've made my day.
I began my morning by reading Charlie's poem, Words. I particularly liked how she highlighted my two least favorite words or phrases in my life.... new normal and moving on! It is impossible to accept our life as normal now, because if you think we can return to normal, then that means you would concede that it is okay for us to have a tree to turn to instead of Mattie, to have only pictures and things to reflect upon to capture the essence of our son, and that memories of our days of being parents and having a child's love are enough to carry us forward and snap us back into normalcy. Clearly, any one who is a parent or who spends a significant amount of time caring for children, realizes that none of this is acceptable and wouldn't be something one would self select.
I did not have a good night of sleep, but despite that I was unable to rest this morning, so instead of spending the day in isolation, which would have been an easy choice, I met Ann and her family for lunch. At the restaurant, I happened to run into a SSSAS mom. In addition, her son and Mattie were on the same soccer team together. We exchanged some light conversation, and then she began to tell me that her son thinks of Mattie all the time, and as she continued she began to cry, which for some reason impacted me. I then began to cry as well because I found it very touching that Mattie was still remembered by her son, a little boy who Mattie did not spend a great deal of time with.
This evening I attended a camp musical show. Abigail and her friend, Jackson were in this show together. The ironic part is last year at this time, Mattie was alive and attended Abigail's camp show. It was an odd feeling to be sitting in the same auditorium a year later, knowing that Abigail is one year older, becoming her own person, and enjoying the fun of singing and dancing, while Mattie is no longer with us. When I am around a room full of families and children, my feelings of being different become more profound. In fact, I almost feel paralyzed in these circumstances. You most likely couldn't tell this by viewing me, but I can internally feel I am building a wall of defense. As I was watching the show (which was wonderful and what I love about Abigail is she has a great stage presence and is always smiling to her audience) I observed those around me. They appeared to be happy and engaged, while I felt as if I no longer could relate to this feeling, and to some extent I almost feel as if I am intruding into a foreign world. I came home tonight and shared my jumbled up feelings with Peter, who naturally got it right away. He gets it so much, that he is very cautious about inserting himself into such events and situations. I on the other hand, I try to go into these events open and willingly, but as is typical I always have a delayed reaction to them. In fact, Peter and I got into a long dialogue tonight about traumatic grief, and how trauma can alter the physical make up of the brain. I am not making that up, there is a great deal of research on this scientific fact. Taking it one step further, I believe that the trauma of losing Mattie has altered how both Peter and I take in information, process the world around us, and in a way has wiped out the wiring for happiness and internal peace. Sounds harsh I am sure, but we both came to the same determination and conclusions tonight. We are lucky that we understand and can articulate our feelings with each other.
During Abigail's show, we were awaiting Katie's (Ann's older daughter) return from her two week sleep away camp. Katie arrived in time to see her sister's show. I couldn't see Katie entering the auditorium, but I could see Abigail visibly smiling and glowing on stage. When I saw Katie sit down next to me, I put two and two together. It was a very sweet home coming to observe, and in fact NO words were necessary. The exchange of smiles spoke volumes. After the show, I joined Ann and her family for dinner. I sat near her son, Michael, and my other 10 year old friend, Katharina. I was thoroughly entertained by two ten year olds at dinner, and got to hear all sorts of jokes! I also observed Abigail try shrimp and actually enjoy it. When I heard her mention this tonight, it brought a smile to my face. I was going to tell her that her statement reminded me of a Mattie comment. But I held back doing that, because sometimes I feel that one's own discovery should be appreciated without tying it to someone or something else. None the less, when Mattie first tried shrimp at one of Georgetown University Hospital's restaurants, Mattie loved it. In fact, that particular day, Ann and I nicknamed Mattie, "shrimp boy." He wasn't eating anything that day, but seemed to devour shrimp. That was a special day in a way for Mattie, because he survived a whole morning of SCANS, and as anyone who has ever done extensive testing with a child, knows the stress associated with waiting around, not to mention the incredible fear of entering intimidating machines. However, for me the worst of these scan days was waiting for the test results, which was like hell on earth. With each successive scan day, the results only got worse, and over time, Ann began coming to the hospital on those days so that I wouldn't be facing that nightmare alone. She lived through that torture with her brother, and now that I look back on things, I am not sure how she took on this intensity with me after having lived through it once. Scan days weren't easy for Peter either. Peter had his own nightmare going on, he was at work and worried about what was going on at the hospital with us.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Grieving is different for each person and we all walk our own path through it. At the workshop I was at last week, a speaker told the story of this older couple who had recently lost their adult son. Friends told them they needed to get help and so they went to a therapist who told them they needed to move on (those words again). The speaker who was sitting beside this couple on the plane asked when the son had died and they said "two weeks ago." He told them they were amazing, but that they were probably still in shock and to give themselves time. Can you imagine that? "Move on in two weeks?" Needless to say, there are some very unhelpful, uneducated therapists out there. I am glad that the plan for the foundation is moving forward and that you are in agreement with the Director of Media Relations at Georgetown about what that should look like. I think that will help you guide your steps into something rewarding and important. Although I am sorry you did not sleep well and you were exhausted, I bet your nap in that chair was relaxing. Being around nature and hearing the sounds G-d created is good for one's inner balance. I hold you gently in my thoughts."
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