Tonight's picture was taken in June of 2009, at Mattie's 7th birthday party held at his friend Campbell's house. Mattie had a bug and reptile party! Right up his alley. Ann and Christine arranged for a company called Reptiles Alive to come to Christine's house. The company brought all sorts of creepy crawling things, that the kids got to see and even touch. Mattie absolutely LOVED it! It was a very memorable party! This was Mattie's second party that year. The first party he had on his actual birthday in the PICU. However most of his friends weren't able to attend that one. As you can see in this picture, Mattie was having an up close and personal encounter with a boa constrictor. I was about five feet away from this snake, but Mattie was clearly intrigued. I have many other wonderful pictures from that day that I just found, and will be sharing them with you this week.
Poem of the day: Cancer by Charlie Brown
Death, you hold no fears for me
But CANCER causes me to shake
I know what damage you can do
And all the things that you give and take
You give depression, pain, disability and fear
You take serenity and strength away
In the fight against you, well
I've seen even the strongest bonds fray
No wonder I have nightmares
And I cannot sleep at night
For even in my dreams
I feel I have to fight
When will I be over this?
When will my life be calm?
I have no idea really, for
There is no magic balm.
I only hope that someday,
All that is left behind,
Are the happy memories of our life,
And peace in my heart and mind.
Later in the afternoon, I went to visit Mary, Ann's mom. When I got there, Mary's caregiver, Shayla, was there. All three of us had a lively conversation for about an hour. I then helped Mary with dinner and after dinner, we sat outside in the heat. However, for Mary who is in air conditioning all day long, feeling the heat is welcomed for a while. While outside, I helped Mary call Helen (Ann's cousin who recently visited). I am so happy Helen was home and could speak to Mary, since I could tell Mary felt lonely and wanted to connect with someone she felt close to. Before I left Mary tonight, she asked me again what day Ann was going to be home. I naturally told her and helped her count the days. At which point Mary asked me whether I thought she was acting like a baby. A baby because she missed her daughter so much. I told her that I most definitely did not think she was a baby, but instead that all her feelings were very natural and normal. When we love someone, we miss them when they aren't with us. Mary smiled and said that she would expect that I would understand because I am such a sensible person!
When I got home this evening, Peter and I sat outside for dinner. It was hot, and unfortunately buggy, but the deck looks so much better now. I shared with Peter my new purchase today. Margaret introduced me to a lovely store called, "One Good Tern" in Alexandria. While there, I purchased a hummingbird feeder. While Peter was painting this weekend, he was visited by a hummingbird. So I was inspired to try to feed and attract hummingbirds over the next month. Wish me luck!
Tonight, Peter and I received some wonderful news from Dr. Aziza Shad (the director of the Pediatric Lombardi Clinic at Georgetown University Hospital). As many of you know, Aziza is the doctor who helped Mattie die with some sort of dignity. Dr. Aziza Shad and her team at GUH have been awarded a $100,000 grant by Hyundai Hope on Wheels for the creation of The Pediatric Palliative Care Program. I told Aziza, that I wish we lived in a world where there was NO need for a pediatric palliative care program, but having lost Mattie, I know better. Such a program is vital for patients and their families, and I can't think of a better doctor to lead this effort. In any case, I thought I was going to have a slow week, but now Peter and I have been invited to three events this week. On Wednesday afternoon, we have been invited to the Hospital to be a part of the Grant Award's ceremony, and then on Wednesday evening, we have been invited to a reception and dinner at the Willard Hotel. On Thursday, I will be attending a morning event at the Press Club in DC to support Aziza and this fine accomplishment.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "To be haunted even in your sleep is a very difficult thing to have to deal with. I can only imagine how awful those dreams are. I have had those kinds of nightmares (fortunately not frequently) and sometimes they seem to spill over and keep you company in your waking hours for quite a while. I hope that as time goes on this lessens and your sleep once again becomes restful and calm. What you said about visiting with Mary is true, she may not remember tomorrow that you were there but you will. The mitzvah is no less because the recipient may not remember it, in fact it is greater because you don't necessarily have the thanks of the person you are doing the good deed for. we forget sometimes that others also have difficulties in their lives as we are involved in our own issues and it is again a tribute to you that people are willing to share what is really important to them with you. Thank you for sharing the story of Patches and the deck; I have that mental image now. I am glad that the situation was reparable as it certainly is amusing to those of us who read what you wrote. As I practice today I send you the peace and serenity it generates for me to help you with your sleep. I hold you gently in my thoughts."
The second message is from my friend and colleague, Nancy. Nancy wrote, "I was glad to read that you had some good pockets of sleep this weekend. I can only imagine how scared you were about your nightmare. In some way, I agree with you that this is how you are working out your concerns about being alive since Mattie died. The weekend produced some big steps for Peter and especially you, too. I know it took a lot of courage to clean those windows and paint the deck. By doing so, you did make room for light and an open passageway for your heart. Leaving the gel hearts on the window are beautiful. It is important to change your surroundings slowly so that you can gently regain your strength in the present. I believe that people rush too much to deal with deep grief. It doesn't let the body naturally come to a decision that it is ok to live when someone they love has died. This, I think, is especially true for a parent with the death of a child. Since we love them so deeply, as you have stated, it is difficult to want to go on without Mattie. Yet, go on you must, as Mattie wants you to take care of your business as he had to take care of his. It seems like Mattie came to visit again yesterday as you cleaned the window creations, you found the clay works. One door closes, another one opens! Did you add new pictures to the rotating gallery? I spotted some that I hadn't remembered at any other time. I was taken back to occasional weekend trips to a park near our house where I rode the ponies. Thank you for that wonderful reminder of my Dad, too. Horses remind us of the strength of an animal to carry us on their backs and the usual gentleness of their walk. It symbolizes the connection between man and his/her environment. We know that many clinicians are using animal therapy with seriously ill patients and the elderly to give them this reconnection with care and love. As always, you give so much to others just by sharing all these wonderful memories and your vulnerability in dealing with your challenges. I hope that you continue to have good pockets of sleep to aide your body's health. With love always and in all ways."
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