Saturday, September 26, 2009

Saturday, September 26, 2009

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.

I would like to end tonight's blog with three messages I received today. The first message is from Karen's mom, my lifetime friend, wrote the following to me, "I am sending you my love and condolences – and wish that I could say or do more to help you heal. One thing comes to mind-- perhaps I might allay your fears that Mattie will be forgotten. Rest assured, he will not be. Your blog has already memorialized Mattie. No one who has faithfully read it can ever forget him or you. Through the blog you have engaged us in your daily struggles and feelings. And through the slideshow we have seen the Mattie with his little boy grin, glowing with happiness and love. You have memorialized the whole Mattie-- that creative, warm and tender little boy in his brave battle against a frightful disease and the spirited, active little boy before osteosarcoma shattered your hopes and dreams for him. I never met Mattie, but I will always remember him."

The second message is from my friend and colleague. Nancy wrote, "I, like many, continue to read your blog each day. It is my way to stay connected to you and let you know that I share your pain. It is impossible to feel what you are feeling, yet, grief experienced has a way of uniting new members. I am taken with how many are reading your words and want you to know that even if you decide to end the blog, Mattie will have touched so many lives and given so much in his years on earth, that a part of him will go on in all of us. I know that you didn't sleep well last evening yet I am glad that Peter and you are able to be with Ann and her family for a while. It doesn't change the circumstances, it just makes the reality a bit different. You don't have to be bombarded with all the visuals, especially the medical stuff, as your body needs to be able to rest. I know that your mind never rests and that is to be expected. Charlie hit the nail on the head with her statement about this being a PTSD reaction. It takes a long time for someone to heal from any trauma, but, the death of a child has to be the worse. I know that you understand, logically, that the two of you, along with the wonderful medical support, did all that you could do to make Mattie as comfortable each day. The three of you had to cram so much into so little time and did it admirably. I am glad that so many are still surrounding you and you are having a chance to share these wonderful memories and happier times. They, hopefully, will support you during the hard times. Have a cup of tea, rest, and remember to take care of yourself, just a little , as you take care of others!"

The third message is from my friend, Charlie. Charlie wrote, "Reading Friday's blog I am struck by your comment that it was hard to move. I expect you are thinking, I am not on 24 hour duty now; I can sleep and eat, why am I so tired? Grief is exhausting. It uses an enormous amount of emotional energy and drains you physically. Do what you can to care for yourself and Peter; try to find your way to a routine of some sort that will help your body cope. Shock depresses the central nervous system and makes it hard to move, to do the normal life sustaining things (eating, thinking, working) that we are used to do. Take it slowly, give yourself time. I know you are afraid Mattie will be forgotten, but I can tell you he will not. I don't pass a toy store without thinking of his lego projects; a book at the library about spiders brings thoughts of Mattie's bugs, etc.I am sure your family and other friends are the same way. For today I wish you a small space of peace."