Sunday, September 20, 2009This is a picture of Mattie at age 3 in the bathtub. The first two years of Mattie's life, he despised taking a bath and was very afraid of the water. By age 3, this all changed, and in fact, he loved the water so much, he would spend over a hour taking a bath and playing with his bath toys. In true Mattie style though, his bath games were always innovative and creative.
Poem of the day (Thank you Kristi!!!)
Death of a Child by Sandy Eakle
Sorry I didn't get to stay.
To laugh and run and play.
To be there by your side.
I'm sorry that I had to die.
God sent me down to be with you,
to make your loving heart anew.
To help you look up and see Both God and little me.
Mommy, I wish I could stay.
Just like I heard you pray.
But, all the angels did cry when they told little me goodbye.
God didn't take me cause
He's mad.
He didn't send me to make you sad.
But to give us both a chance to be a love so precious .. don't you see?
Up here no trouble do I see and the pretty angels sing to me.
The streets of gold is where I play you'll come here too, mommy, someday.
Until the day you join me here,
I'll love you mommy, dear.
Each breeze you feel and see,
brings love and a kiss from me.
Last night, I went to bed at 3am, but by 8am, I woke up in a panic. Why? Because in my deep sleep I heard Mattie calling out for Peter. I distinctly heard Mattie saying, "Dad Help!" It sounded just like Mattie and I bolted up. However, I had to remind myself that there was NO Mattie around to help. This call for help bothered me all day. Why would I dream or think I am hearing Mattie calling out for help? I tried to go back to sleep, but all I kept thinking about was Mattie. Where is he? Is he happy? Is someone taking care of him? The list of questions just continued on. This was the first time since Mattie's death that I actually imagined hearing his voice, and I find it interesting that even in my dreams I can't find peace. Debbi (our sedation nurse angel) told me yesterday that she has had three Mattie dreams already, each one is peaceful and he appears happy. I would long for such a dream, but I imagine there is NOTHING peaceful in my head, and this would explain why my dreams match my reality.
Peter and I walked by the Potomac River again today and had lunch outside. Part of me feels a sense of guilt for feeling happy to eat in peace, not to be jumping up every five seconds, and being able to have a conversation. The guilt of course stems from the fact that admitting this makes me feel as if on some level I am enjoying my independence and time without Mattie. However, of course this isn't the case, I would give up every ounce of freedom to have Mattie back. But in all reality, I am enjoying the independence from living in a hospital, quarantined to a room the size of a closet, and sharing bathrooms with strangers. The list goes on. But the kind of love Mattie and I had with each other was so deep and meaningful. Losing such a great love is not only hard to rationalize, but the void can't be filled. In a way Peter and I feel as if we are mortally wounded, yet each day we pick up the pieces and try to carry on.
At lunch, Peter and I did talk about Mattie, however, we both know we can only handle such raw material in bits and pieces, and we are okay with this. It was a beautiful sunny day in Washington, DC today, and in part as we sat by the Potomac, we could see across the way, Roosevelt Island. Roosevelt Island was one of Mattie's favorite places to walk, explore, and race his remote control boats on the water. It was hard to see Roosevelt Island because it reminded me of Mattie, in fact even the Potomac reminds me of Mattie. Peter would take Mattie on the River to go fishing, and I distinctly remember a couple of times they took me out on a row boat. Mattie was just so engaged on the water, and wanted to point out everything to me. Mattie was full of energy, almost electric, and he had a way of lighting up our lives. However, to some extent without him in our lives, our internal spark or flame has been blown out.
Later in the day, I went to visit Ann's parents, and Ann's dad appears to be holding his own thankfully. However, each day his needs and symptoms are so different, and there is a total lack of consistency. I think in many ways not knowing what you are going to contend with makes this caregiving role highly stressful. None the less, in the midst of great sadness and not sure how we will go on, helping Ann and her parents is giving me a purpose right now. Of which I am grateful. Mattie was actually very concerned about Ann's dad before he died. Mattie knew Sully, Ann's dad, was sick. One evening in August, when Ann was away on her family's vacation, Mattie turned to me and asked me how Sully was, and who was looking after him while Ann was gone. When I told Mattie that I wanted to visit Sully to see how he was doing, Mattie's response was, "somebody's got to take care of him while Ann's away, so you better get going." I will never forget that dialogue to this day, because to me this illustrated Mattie's empathy and deep understanding for how awful and lonely it feels to be sick and isolated.
I would like to thank the Manogue family for dinner last night. Sorry for last night's oversight, we appreciate your thoughtfulness and support. We also want to thank the Doane family for a wonderful home cooked dinner. Thanks Mary for your kindness and constant support! It means a great deal.
I would like to end tonight's posting with three messages. The first message is from my friend Charlie. Charlie wrote, "Your struggle to make some sense of Mattie's death comes ever more clearly through the blog. None of us can truly know the depths of your pain or what the end result will be. I've done a lot of reading on illness and pain and loss this year and what stays with me is that everyone's pain is different and every path out is unique. However, over and over again those who've walked the path of grief say what helps is to have friends and family close; to have those who love you stay connected. I know that you and Peter have that and so I have faith that eventually you will find your way. It is not a straight path, nor can it be rushed. All those who know of your struggle to save Mattie, continue to pray for you and to hold you in their thoughts as do I. I leave you with this for now...from Milosz's On Angels: " Day draws near, another one, do what you can." And the rest of us will do what we can to support you."
The final message is from one of Mattie's favorite babysitters. Emily W. wrote, "Every morning when I get to work I go on my iPhone and read the blog. I had been traveling back to NY from visiting Adam in Pennsylvania that Tuesday and had not had the opportunity to read the blog on Monday which made Tuesday morning's blog an absolute heart-stopping shock. I was in my office at work when I waited for my iPhone to load the blog and I know the whole office heard my scream when the title Mattie Died! appeared on the screen. A co-worker walked into my office upon hearing my cry and said that she had never seen a face so white in her life. I cannot fully express the devastation I felt that day or the continuous devastation I continue to feel. I cannot stop thinking of memories Mattie and I shared....I know I wrote some in the card I sent you....but I recently remembered sitting on the floor with Mattie last October as he sorted through his Halloween candy. I was "shopping" at Mattie's store when he said, "You know, you lovvvveeee chocolate, and I looooovvvvve vanilla....so, we're a perfect match!" I will never forget the sound of his voice as he said such a sweet, insightful and adorable statement. I have found myself continuously recalling such memories and writing them down because I think I fear that I will forget them. The truth is, though, I can NEVER forget them. I have been so deeply touched by the relationship Mattie and I shared that I will always remember the times we spent together. I was at the gym today and listening to my iPod and the song, "You're The Inspiration" by Chicago was playing. Although the lyrics in the song may be referring to a romantic love, I immediately thought that this is a song about Mattie. I began to tear as I thought that this is a song that the two of you are singing to Mattie, that I am singing to Mattie because he was and always will be an inspiration. Vicki and Peter, the two of you were always a HUGE support to me during my time in D.C. You always provided me with love, guidance, encouragement and support and I continue to admire you. You created a miracle, Mattie, and allowed for me to be touched by his beauty and magic. I think about the two of you and my Mighty Mattie so much during the day. The wallpaper of my cell phone is Mattie and I look at it constantly. Do not worry that Mattie will be forgotten- he has been engraved in my heart, soul, and mind and is forever a part of my life as are the two of you. "
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