Sunday, October 25, 2009This picture was taken on August 5. The day Mattie's cancer was diagnosed as having metastasized and therefore his case was terminal. Mattie and I spent some time between tests that day outside in the hospital rose garden (where I sat with him and told him the story about the day he was born, a story he loved hearing). That day, Mattie also stopped to take a picture by the Hospital's elephant statue. This elephant is maintained by the art therapy program at Georgetown's Lombardi Clinic, and if you look closely the elephant has ceramic tiles on it which were created by patients and Hospital employees. Mattie liked to visit this elephant, because one of his nurses, Kathleen, created a tile for the elephant (which is located right by Mattie's knee) that read, "I wish for a Mattie Miracle." If only such a miracle were actually possible. When I look at this picture I can't help but be perplexed, because Mattie looked so healthy and happy on the outside, and yet was SO sick on the inside.
Poem of the day: Letter to Mom by Joy Curnutt
Mom, please don’t feel guilty
It was just my time to go.
I see you are still feeling sad,
And the tears just seem to flow.
We all come to earth for our lifetime,
And for some it’s not many years
I don’t want you to keep crying
You are shedding so many tears.
I haven’t really left you
Even though it may seem so.
I have just gone to my heavenly home,
And I’m closer to you than you know.
Just believe that when you say my name
I’m standing next to you,
I know you long to see me,
But there’s nothing I can do.
But I’ll still send you messages
And hope you understand,
That when your time comes to “cross over,”
I’ll be there to take your hand.
Peter and I had the opportunity to attend Ann's church today. Ann had a special mass to honor the death of her father (October 5, 2009) and the death of her brother (October 28, 2007). It was a lovely service and it was very special because Ann's mother, Mary, was able to attend, along with several of her assisted living friends. It was a memorable outing for all of them, and Peter and I felt very honored to be included. The priest gave a homily and spoke about a whole host of things, but one of his main points that caught my attention, mainly because I felt as if he were speaking to me, was that God understands there are times when we turn our backs on him. The priest continued on by saying that God forgives all of us for these feelings, we just need to ask for forgiveness. I wouldn't say per se that I have turned my back on God, but I do know that I am angry at him. I grew up believing that God's will wasn't necessarily challenged and that even under the worst of times, with God, all things are possible. You just have to have faith. All the things I have always believed in however have been challenged and turned upside down with Mattie's illness and death. There are times that I feel guilty for having such negative spiritual feelings, and perhaps in time I can come to peace with them and with God. But I am not there yet. Toward the end of today's service, the choir sang Amazing Grace. It took every ounce of strength I had to keep in together while this was being sung. Those of you who attended Mattie's mass may have seen that I did not select Amazing Grace to be played at the funeral. Why? Because this hymn meant a lot to Mattie and I. Mattie was a very colicky baby, and one night out of sheer desperation, while rocking with him for hours, I started to hum, Amazing Grace. Mind you I tried everything else plausible to calm him down, but when he heard Amazing Grace, he quieted down instantly. It was from that day forward that I learned the power of Amazing Grace, and even when Mattie was very sick, I would sometimes sing this to him. The hymn had the same effect on him whether he was a baby or was seven years old. So needless to say, hearing this hymn today, transported me back in time instantly... to the moment when Mattie was a baby, and my main worry and concern was colic.
In the midst of the mass today, Peter tapped me on the shoulder and pointed toward the church's door. When I looked over I saw Melba. Melba was one of Mattie's wonderful HEM/ONC nurses. We were both stunned to see Melba, but we later learned that this was her parish and she also is an usher at the church. Melba introduced Peter and I to her husband and her two sons, and for Peter and I it is so nice to be able to see Mattie's nurses again. These women will always be special to us and we have a special place in our hearts for them. Yes I realize the services these provided us were part of their job description, however, the love, compassion, competency, and unending support they gave us went beyond a job description. These things clearly came from their hearts.
Peter and I had the opportunity to have brunch with Ann and her family and later in the afternoon, we got to see the wonderful video tape of the services Ann had for her father in Boston (Thanks Tanja you did a great job! Mary and I felt like we were actually there!). However, as the afternoon wore on, I could tell I was dwindling. Even on migraine medication I still feel horrible, and I wonder when this pain will ease up, because the intensity of it is debilitating. I am very aware that I carry my stress, pain, and grief internally, and it is my hope that in time it will come out, so that I physically do not continue to feel an inability to function.
I would like to share with you a message my mom sent to me today. My mom created the character, Mango Mouse. This was a feisty mouse who Mattie just loved hearing stories about. In fact, when we were trying to get a message across to Mattie to alter his behavior or point of view, we would craft a Mango Mouse story to help him see other alternatives. My mom felt as if the memory of Mango Mouse should be preserved!
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The Legend of Mango Mouse by Virginia R. SardiI saw a brilliant evening star that was shining in the blue inky nighttime sky. Illumination like this, my best instincts told me, is a sign from heaven of a new brightness come to light a darkened universe. Could it be that what I was looking at was the incarnation of the earthly incandescence that used to light my world in days gone by? Could it be that what I was looking at from way on high was a great big, brilliant star that connected me to past happiness and transformed itself into a great big Mattie smile?
Bold, radiant light from above reminded me of a beautiful day not long ago when after school ended, Mattie like Superman himself, joyfully devoured a big delicious piece of cherry pie in celebration of Washington's birthday. All the while he munched, he "multitasked" as he was prone to do as he listened to my tale of mischievous Mango Mouse. It was a story about a "boy" who lied to cover up his mistakes but whose nose gave him away by turning orange whenever he did. Mattie loved the story of the adventures of Mango and his friends and his great sense of the dramatic took hold whenever he heard about the escapades of Mango Mouse. He insisted that I add another character to the plot who surprise, surprise was named Mattie Mouse and who went along with Mango whenever he had another of his wild and zany ideas. He loved to inject new characters and plots into the many episodes of the story as it evolved. One plot he was very keen on was one where the two boys, Mango and Mattie, drove Mattie’s father’s car, without permission of course. Mattie would then prompt me to create some scary scenarios that had many unpredictable moments, like the time the boys were stopped by a policeman, who wanted to take them to jail for driving without a license. The moral of every episode would be that the “boys” realized how important it was to always tell the truth, no matter how hard that might be to do and everyone lived happily ever after. Mattie’s creativity injected youthful energy and excitement to the stories we made up and every time he added a new twist and turn to the plot, the stories just kept getting better. It was as if they had been "touched" by the hand of a budding raconteur. On this day, I was very curious about how he came to be so prolific in inventing characters and plots to add to my stories. So I asked him, “Where do your ideas come from?” His answer, "It's all comes from my imagination Grammie" and there was truth in that simple honest reply. Imagination unbound, sweeping, quick, incisive and irresistible, were all synthesized together in the mind of one little precocious and dynamic little boy! That was Mattie!
In my mind' s eye I remember that day and the happiness we shared together. To Mattie, playtime was always an intense and challenging experience, to be lived to the fullest, never mundane or ordinary. So whenever I engaged with him in playtime, I knew I’d better not let him down! He brought the concept of “having fun” to a new dimension and one way or other, even if by osmosis, you experienced “fun” like you never had before or ever will again! As to cars, trucks or any other vehicle on wheels, he knew them all and was secretly keen on driving one himself, realizing that it was not possible because he had to grow up first. “Speedy Red” gave him a chance to be a kid and drive like an adult. He loved every minute in “Speedy Red.” It was an awesome treat to see him maneuver in it like an old pro. It was his fondest wish and it did come true.
Tonight, I look up above at the magical brilliant star high above my house and wonder what kind of car he is driving now. If he can’t find one, he will create it for himself, of this much I am sure. Get out that heavenly glue gun right now! I still reminisce about the life force of this magical boy whose stamina, expressiveness and joie de vivre must now be testing the resilience of the best the angels have to give by making certain that NO creative stone up there is left unturned!
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I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It was really nice to read Bob Weiman's tribute to Mattie and how he viewed Mattie. I too, added Mattie to my prayers on Yom Kippur this year and Tom and I recited the Yizkor at the memorial service as well. Sometimes I "hear" in my mind the symphony created by the variety of prayers for Mattie and I wonder what G-d makes of it all. I think it creates a heavenly music of its own and that Mattie hears and dances to it. I think listening to music that someone you love appreciated in their life is a prayer of its own. Today, enjoy the music Mattie loved and know he hears it again through you."
The second message is from my lifelong friend, Karen. Karen read in last night's blog my guilt for not sharing the musical, Sound of Music with Mattie. Karen decided to address that issue with me immediately and reminded me of the wonderful experience he had in the winter in NYC. Thanks Karen. Karen wrote, "Saw the blog. Mattie may not have been exposed to certain musicals, but he got to see the Lion King on Broadway and go backstage. I'm a grownup, and I loved seeing the backstage. I think Mattie liked that too. He certainly had a look of excitement and mischief while Pete carried him around. I think backstage to the Lion King will counter not seeing the Sound of Music any day of the week."
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