Tonight's picture was taken in August of 2009. It is hard to believe that last August, Mattie was still with us. By this point, we knew Mattie was terminal, however, despite knowing this diagnosis, when I saw his smiling face, I had trouble accepting the reality. Probably so much so, that it wasn't until the nurses at the hospital told me Mattie was dying, did I then understand the fight was over. Up until then, I still believed we could keep him hanging on. I will never forget that feeling of complete shock, a feeling I have grown accustomed to for over a year. A feeling that almost becomes hard wired into me, that it is hard to remember life when I did not live in such a hyper alert state.
Poem of the day: Conflicting emotions by Charlie Brown
So hard to celebrate
One more time
A day that seems
No longer mine
All of my days
Are tied to yours
And all of those "rooms"
Now have closed doors
I'm trying to find
Someway to be
Both happy and sad
And it is hard for me
My life still has much
But I can't be glad
With missing you and feeling guilt
I mostly feel sad
I appreciate my friends
And all that they do
But there is still a big hole
It is so hard without you.
Since Mattie's death, I occasionally have very bad nights of sleep. I got about four hours of sleep last night, and today, I wasn't feeling in the best of moods or feeling physically well. When I opened up my e-mail today, I read Charlie's poem. Conflicting Emotions is a very appropriate name for this poem and for how I am feeling. I find that happy occasions and social gatherings can now sometimes have the opposite effect on me. I fully realize that the issue lies with me, and has nothing to do with others or the event per se. But celebrating internally now doesn't feel right. So on some level there is guilt associated with having a birthday party. Last night, after many of the party attendees left, there were about six of us who remained to sit and chat over food. Ann was commenting about how her mom, Mary, has a hard time understanding how someone who is grieving can "move on." Mary lost her son a little more than two years ago, yet in many respects this loss is very real and very fresh to her. Mary and I share this commonality, we both have issues with the term and concept, moving on. However, I realize NOT all people who have suffered the loss of someone close to them feel this way. Which further highlights how grieving is SO different for each person, and therefore when interacting with someone who suffered a loss, I can't assume this person will feel or act the same way as myself. Though I must admit understanding Mary's feelings, helps to normalize my own. Having these conversations with friends, I find very helpful, and being able to share these feelings with someone is a gift. The gift of time, a listening ear, and understanding are much better than anything you could ever buy me.
As many of you know the terminology, "new normal," used extensively in the social work community when helping newly diagnosed families, is a concept I really dislike. Moving on is a close second! For me, "moving on" is disrespectful and implies that Mattie's loss was something that I could rationalize, shelf some where, and re-establish my life. I had this terminology discussion with Ann this weekend, as she was trying to help me out of the funk I was in, and she tried to have me visualize "moving toward" something, and not necessarily on from something. So I continue to give that great thought.
I had a wonderful email exchange today with Marianne, the Director of Media Relations at Georgetown University Hospital. Marianne has been extremely helpful to Peter and I and the Foundation. We very much appreciate her willingness to share her time and expertise with us, and today, she helped us brainstorm some next steps for the Foundation. Mind you, when she was highlighting her thoughts, I hadn't shared my thoughts for the coming year with her. When I read what she wrote, I actually got excited. There is a word I rarely use now! But I got excited because Marianne was suggesting ideas that I embrace and would love the opportunity to follow up on. As these ideas begin to unfold and become a reality, I will certainly highlight them for you on the blog. But I guess what I am saying is that Marianne made me feel as if my ideas really did have merit.
Around lunch time, I asked Peter whether he could leave work for about an hour or so, and have lunch together. Which is what we did! Poor Peter, when he sits down with me, he just never knows what he is going to get. Peter started talking about how Mattie and I shared a very close bond, and as he began talking, I began crying. In fact, lately Peter and I haven't met for lunch when I did not start crying. Meeting for lunch for us is very important, because this is the time of day when we are both fresh and have the energy to talk about difficult issues. By dinner time, we are both usually spent and talking about our grief is just too painful at that point.
In the afternoon, I went with Ann, her cousins, and Abbie and her friend, Jackson to the mall. They wanted to go to the Build-a-Bear Store. When we got to the store, we met up with Tanja and Katharina. Out of the corner of my eye, I saw Mattie's wheelchair. Seeing that chair always stops me in my tracks, because Lord know, who I am going to see in that chair. Naturally though, it was Katharina who is recovering from her knee surgery. In the store, each of the children picked their animal that they wanted to create. Katharina held my hand and had me pick the animal she should build. I selected an owl! He just caught my attention. For the next 45 minutes or so, I watched the children build bears and an owl. They had the animals stuffed, got to select a fabric heart to place into the stuffed animal, picked out an outfit for the animal, and even made a birth certificate. Mattie went to this store twice. Once for a birthday party, and once at the Nat's stadium, where he created a Nat's puppy! After the construction process, we then went for frozen yogurt. A foreign concept in the DC area really, but a major reality in New York and Los Angeles, two places I grew up in. So Ann introduced me to something today that reminded me of yogurt my mom and I would get in New York City. Funny how tastes can bring you back in time!
When we returned back to Ann's house, I sat on her porch and literally fell asleep. I am so tired, and the sound of the birds, and wind blowing through the trees apparently knocked me right out. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As always I am profoundly impressed by the strength and impact of the blog. We all look at life a little differently now and are willing to step out of our comfort zone and take risks because you've reminded us how fragile and precious life really is. I really am impressed and grateful to Danelle for stepping up and saying something to that woman at the bus stop and then following through with a call to the transportation office for the school. I am sure that she will save some child from injury. While we rarely stop and thank anyone for preventing a catastrophe, in this case, I would designate her a heroine for going the distance on this. The party that Ann and Tina had for you was lovely; you certainly deserve to celebrate your day and I hope you can eventually find your way back to that without any reservations. The necklace is beautiful and totally unique just as you are; what a wonderful gift to receive from a very special group of friends. May today bring some more emotional sunshine into your life. I hold you gently in my thoughts."
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