Wednesday, January 27, 2010Tonight's picture was again taken when Mattie was 11 months old, on his first trip to Los Angeles. My mom snapped this eclectic picture of us at Huntington Library's gardens. What I particularly love about it, is all three of us are doing different things. Almost like a snapshot of a moment in time, not posed, but our reality. Peter of course couldn't see anything going on behind him, and Mattie was all smiles as he had my undivided attention.
Poem of the day: The Void
by Anthony Portillo
How do you keep life’s music playing
How do I help you understand what I’m saying
when this feeling of loss and emptiness consumes me
How I pray someone or something would set me free
Like floating thru a void that has no beginning and no end
These tattered and broken emotions I will try to mend
Hopeless are the thoughts that fill a guilty mind
And never were so true the words, life is unkind
Cold and cruel now is this life, with a hole so immense
Which way to go, which way to turn I have no sense
To laugh and to play these things seem so far away
To live without this pain in my life, how I long for that day
Searching my thoughts for happiness already spent
To feel that again all my prayers I have sent
I could never imagine a world without you
To carry on is something I must find a way to do
As I reflect on tonight's poem, and particularly on this line, "To live without this pain in my life, how I long for that day," I find that I am conflicted about this statement. I certainly wish I never experienced the void of Mattie in our lives, and I do long for the day when he was healthy and those more simpler times. However, now that Mattie is gone, I can't say that I long for the day without the pain. Because what does it mean to live without this pain, does it mean that I have come to peace, acceptance of his death, and adjusted to life without him? Certainly any grief counselor would say these are the ultimate goals: to accept the reality of the loss, and be able to keep Mattie's memory alive, and yet adjust to life and the environment without Mattie. I have heard about these grief tasks for years, but now that I am actually expected to try to apply them to my own life, I have major issues with them. I can see myself accepting Mattie's loss and adjusting to the loss on a cognitive level, but at the emotional level, the words accepting and adjusting DON'T compute. How can I ever accept and adjust to the torture we lived through in the hospital, what we witnessed Mattie go through, and to now being a childless family? It is ironic, having this profound loss has enabled me to directly see and experience that dealing with grief, and helping someone through this process doesn't occur through stages or through tasks, but over a lifetime.
I received this beautiful picture of a heron today from Tad and Junko. Many of my readers may remember that Junko is my friend and SSSAS mom who would come to the hospital and give me massages. Tad knew that we would take Mattie on walks at Huntley Meadows. Mattie loved this park, its boardwalk over water, and particularly was fascinated by the amazing bird traffic at the Meadows. Great Blue Herons, are the Maryland State bird, and we are lucky to have many of them around our area. To Mattie and I, they always reminded us of prehistoric birds for some reason. But mostly we loved watching them move, their slender necks and long legs gliding in the water. I enjoyed receiving this bird picture today, because it brought back all the memories I have of all our trips and bird watching. I spent part of the day visiting Mary, Ann's mom. Mary was moved to a rehabilitation facility today, and despite the trip, the transportation, and the change of scenery, Mary handled it all quite well. I have come to see, that despite Mary's physical decline, she has great perseverance and fortitude. In a way, this kind of resilience is to be acknowledged and appreciated. Mary and I have spent a great deal of time together over the past five days, and despite not being related to her, you do get an understanding about someone's likes and dislikes, when you spend a great deal of time together. In a way, getting to know someone on this deep level is a privilege.
Helping move Mary into this facility today reminded me of all my admission days with Mattie. Between Ann and I, everyone in the facility was hopping to get things accomplished. We were moving furniture, having floors cleaned, paperwork being completed, and of course helping Mary adjust to her new surroundings. The irony is, after living in a hospital for 13 months, I feel like I know most of the strategies necessary to enter a health care system. I certainly couldn't have said this prior to Mattie's illness. In fact, prior to Mattie's illness, I despised hospitals, and everything that went with them. So in a way, I have experienced a total perspection change while dealing with grief. Helping people who are sick, advocating for their needs, and providing them with emotional comfort are things that bring me peace now. I don't say that lightly, since not much brings me peace these days. But with Mattie, after being his intense caregiver for so long, it is hard to shut off this caring intensity. Perhaps that is okay too, if I can channel it in an appropriate way.
I did come home this afternoon and rested. I am intensely tired, and feel fatigued physically and emotionally. So I knew that meant I had to slow down. Peter and I went out to dinner tonight, and we talked about his experiences at Georgetown University Hospital today. Peter went to visit a colleague's brother. This young man was diagnosed with leukemia. Peter's colleague contacted him for a referral to an oncologist, because she wasn't happy with the information he was receiving at another hospital. So Peter contacted Dr. Aziza Shad, the director of Lombardi's Pediatric Center. Aziza within minutes connected this young man with a top oncologist at Lombardi, and he is now in treatment. As many of my readers know, Aziza was the doctor on call, who helped us the week Mattie died. No matter where Aziza is, and I mean where ever, she could be in another country, if Peter or I text message her, within minutes she responds back to us. This is not only a fabulous doctor in my mind, but she is an incredible human being. I don't say that lightly, but we are very grateful that she helped Peter's colleague, and I am happy Peter had the opportunity to visit this young man.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "The cystoscopy is not a fun or pain free exam; I’ve had one. It takes a couple of days before the feelings in your bladder and urethra return to normal. Given how I feel about most medical tests, it is amazing what Mattie managed to tolerate and make it through as well as he did. It is a testament to your bond with him as well as some of the best medical folks around, like the ones who ran the scans and gave him sedation for his multitude of tests. It is hard for me to believe it has been twenty weeks now; it doesn’t seem that long to me since you gave us the heartbreaking news. It was wonderful of you to advocate for Mary as you did; this is another area where you might find future employment or volunteer work if you decide not to return to teaching. Or perhaps there is a way for you to combine your strengths and teach medical personnel how to emotionally support patients. The right opportunity will surface when you are ready to accept it, I’m sure. At the beginning of practice today, the instructor reminded us not to be competitive, either with others or with ourselves. Today is a day that is different than yesterday and will be different than tomorrow. So too it is with managing grief; today is the day that you have to go from wherever you are. I wish you a space of serenity and peace in that grief and as always you are in my thoughts."
The second message is from one of my very first teaching assistants. Liz wrote, "Just wanted to share that I love, love, love the past two pics you've posted of Mattie. Both have made me smile...what a little darling. Also, I laughed out loud when I read the part about you sticking it to the psychiatrist on Mary's behalf. Well, done. I know it must have felt great to do this (for many reasons), what is also amazing to me is that a psychiatrist actually listened and changed her mind about etiology and diagnosis. You remain, as always, a fantastic advocate."
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