Thursday, November 19, 2009

Thursday, November 19, 2009

Tonight's picture features Mattie at Campbell and Livi's house (good friends from kindergarten). You can see his central line (white) dangling from underneath his shirt. Despite being on chemo, Mattie found the energy to be a kid, pulling his friends in a wagon as they were doing some sort of imaginative play. This picture captures the true spirit and determination of Mattie. Of course, from a parent perspective, I was always worried about Mattie's central line. Because either it could have gotten dirty, or worse, God forbid it was ever pulled at hard, there could be severe consequences since the line was connected to the central vein in Mattie's chest, right above the heart. But Mattie was a pro at caring and advocating for himself, and "sparky" (the name of Mattie's central line) was very important to him because it prevented him from having needles injected into his skin.

Poem of the day: Job's Prayer

The valley of death

To me is now real

Those lovely still waters

I never did feel

My cup runneth over

But with sorrow and woe

My shepherd has left me

Where He is I don't know

I have yet to be comforted

By His staff or His rod

My spirit is broken

Was I abandoned by God?

God's Answer: I am here my child

Know that all your days

And I'll be with you forever
Though hidden are my ways.

After three days on new medication for my headaches, I finally decided this morning to stop taking it. I haven't slept well in three days. The medication makes me edgy and agitated, and wakes me up from a deep sleep every morning at 4am. But once up I have trouble going back to sleep because of how I am feeling. In addition to this, if that wasn't bad enough, the medication has given me intense stomach pains and a degree of fogginess during the day. It is true, I no longer have the intense headaches while taking the medication, but at what cost? I think the side effects almost seem as daunting as the presenting symptoms.

I met up with Ann today and ran chores and had lunch together. We talked about her eldest daughter's birthday party taking place tomorrow, and it has been very meaningful to be able to help her and be included in the process. It gives me something to focus on rather than my usual feelings of sadness and loss. Of which I have plenty.

As we get further away from Mattie's actual death, the reality of the situation hits me harder. I am able to process the meaning of his loss on a deeper and more intense level. There are days I try to remember what he sounded like, how he laughed, and my favorite... how his cute cheeks felt has they rubbed against my face. I remember the feeling of his hugs, kisses, and holding hands, but I must admit there are days I struggle to remember his voice. I know that Mattie once called Peter at work, and left him a message on his voice mail. I wish a had a message on my phone too, so I could hear Mattie whenever I wanted to.

After visiting with Ann today, I headed home. As I was approaching my front door, I heard Mattie's chimes blowing in the wind. Almost welcoming me home. I always talk to the chimes, and each time I pass them, I tell Mattie I miss him and that I hope he knows that I love him. I can hear these chimes ringing even when I am inside and have all the windows closed. What makes this so ironic is that the chimes are very small, yet despite their size, when they ring, just like Mattie, you can hear their presence calling.

There are moments during the day where I feel as if no one can possibly understand how I am feeling. Can you understand just how awful it is to see your child die? Or can you feel the despair that lies within me once the glimmer of hope of saving Mattie died? Most likely the true answer is NO! Nonetheless with that said, several hundred of you a day visit Mattie's blog, and this leaves me with the distinct feeling that even if you don't know how I exactly feel, you are deeply trying to understand. The fact that many of you haven't deleted this site from your daily routine means a great deal to me, because it just verifies that like the battle with cancer, I am also not walking this battle to survive the death of my son alone. That may seem trivial to my readers, but as the recipient, it is NOT trivial. This is hard enough, but to go through this alone would be an additional torture.

Charlie sent me a link to a song today which she thought I could relate to. She knows I like New Country Music, and she sent me Keith Anderson's "I still miss you." Charlie said that she thought that the song reminded her of me (everything but the drinking part!), particularly the struggles I must face each day now that Mattie is gone. I attached a link to the song for those of you interested in hearing it.
http://www.cmt.com/videos/keith-anderson/227381/i-still-miss-you.jhtml

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I think you came up with a really good equivalent for those who have not suffered a loss; it is like moving to an entirely new place and being lost and not fitting in anywhere. Of course the not fitting in is also on the inside as you don't have your own "comfort zone" any longer. But I think there is hope in what you said; sometimes it takes a good long while but eventually you do find some level of comfort and familiarity with your new surroundings even if they are not where you would have chosen to be. It seems the trip to Lombardi was a good one; you got to spend time with some of Mattie's "angels." Again, I see the confirmation that Mattie will not be forgotten; his "footprints" remain on people's hearts and lives even as we don't hear his tread anymore. It's wonderful that you were able to finish the day with positive thoughts and remembrances from the "music team" as remembering the happy times is sometimes hard to do. Today I wish you some happy memories of times with Mattie and the knowledge that you and Peter made those happen."