Tonight's picture features my favorite superhero, Super Mattie! Mattie went to a superhero birthday party for his friend Alex, and Mattie truly got into the spirit of things.
Poem of the day (Thanks Charlie!): Anger by Joanetta Hendel
Don't tell me that you understand
Don't tell me that you know
Don't tell me that I will survive
How I will surely grow
Don't tell me this is just a test
That I am truly blessed
That I am chosen for this task
Apart from all the rest
Don't come at me with answers
That can only come from me
Don't tell me how my grief will pass
That I will soon be free
Don't stand in pious judgement
Of the bonds I must untie
Don't tell me how to suffer
And don't tell me how to cry
My life is filled with selfishness
My pain is all I see
But I need you and I need your love...Unconditionally
Accept me in my ups and downs
I need someone to share
Just hold my hand and let me cryAnd say, "my friend, I care."
Last night, I received a lovely e-mail from Karen’s, my lifetime friend, mom. Mrs. Fischer wanted to write to me to assure me that Mattie will never be forgotten and from her perspective, I have already created a wonderful document that celebrates, honors, and memorializes Mattie’s life. What is it? The blog! I am not sure why I hadn’t thought of the blog this way before, but upon reflection, she is 100% correct. Certainly the blog covers only a year of Mattie’s life, but it is within the blog that I reflect on his history, our dynamics as a family, and of course, Mattie’s amazing personality, courageousness, and strength as he fought Osteosarcoma. There were some nights that writing the blog was harrowing, especially after a long day in the hospital, not to mention long nights. But I always felt it was important to write. To get Mattie’s story out to his family and friends, but to also capture the essence of Mattie. In all respects, Mattie was an amazing child, who suffered in ways that even the written word doesn’t do justice to. Of course, in turn Peter and I suffered as well, and this feeling of helplessness and inability to save your child will be forever etched in our minds.
Last night, Tanja sat with Ann’s dad at the assisted living facility, while Ann and I went back to her house and had a family dinner with Peter and her children. I have been very hesitant to be around children since Mattie’s death, but this is something Ann wanted to do last night and I was compelled to join her. Ann’s children did not make me feel awkward in the least, and I suppose the beauty of children is they live in the moment, and appreciate it for what it is, and not what it isn’t. The sharp contrast between my home and Ann’s house is the noise. Without Mattie, our home is now eerily quiet, toys surround us, but there is no one to play with them, we have kid cups, plates, stuffed animals, and children videos everywhere, and yet there they all sit. Quiet, untouched, and forgotten. Meanwhile at Ann’s house, there is life, laughter, conversation, children dancing, and singing, and I find I sit there and absorb it all in and am not sure whether it is something I can handle and love, or whether this pains me because it reminds me of my childless life.
Today, Mattie’s school, SSSAS, had their annual Fall Festival. Peter went with Ann, while I stayed with Ann’s parents. I give Peter a lot of credit for being able to go to back to Mattie’s school, and not only that, but to be surrounded by children. In many ways though being with Ann is helping both Peter and I to engage back into the world, on our own terms. I do think Peter is doing better on that front than I am, most likely because Peter is much better in tune with his feelings than I am on the issue of Mattie’s death. As our week with Ann comes to a close, I land up being thrilled that we were able to help her and Bob in some small way, but on the other hand I am cognizant of my fears that I have about leaving her home and moving back into mine. I worry about what the future looks like for Peter and I without Mattie, and being away from our home enabled me to retreat from the dark inner world that we are left to live in.
Ann and I spent a good chunk of the day together in her parent’s room. Her dad continues to decline and we can see him slowly starting to slip away. Hospice came over to visit with him today, and assess his status. I have experienced Mattie’s death recently, but Sully’s death process is looking quite different. Mattie started to decline, and the decline progressed rapidly from one day to the next. But Sully has good and bad days still, which makes you uncertain how long he will be with us. Nonetheless, unlike with Mattie, Sully can talk about his fears and he can also begin to start saying good-bye to the two priceless women in his life, Mary, his wife, and Ann. Being able to say good-bye was something I had wished I had with Mattie. Mattie lost ground so quickly, there was never this time to talk and say I love you. Sure Peter and I told Mattie, but the conversation was one way. I have to believe he heard us, which is one of the main reasons he refused to give up toward the end without serious medications on board to relieve his pain and suffering.
In the midst of great sadness though, we had times of laughter today. Mary knows I am working on a slide show for Mattie, and she was eager to see the pictures I have put together so far. So I showed her about 100 pictures, and we talked about each one. Mary and Ann also shared an album of theirs with me, and I find the sharing of thoughts, memories, and fun times enable me to pause and appreciate the friendships and support that are around me. In a way, being surrounded by their friendship makes me feel safe and gives me the courage to wake up each day and accept whatever feelings or lack of feeling that arises.