Tonight, as we remember Mattie, who has been gone from our lives for 11 months or 48 weeks, his spirit, energy, and joy for life seems captured in this picture. I snapped this picture in my parent's living room in California in March of 2003. Mattie was 11 months old and this was his first trip across the country. Mattie proved to be a very good traveler, handled planes better than I do, and he simply loved an adventure. In this respect he was his father's son!
Poem of the day: Gifts by Charlie Brown
Some days missing you is soft
It's that quiet, gentle ache.
But sometimes it is hard
My whole world seems to shake.
I didn't see how I'd cope
Or how I could get through,
Each of the past 11 months
That I've spent missing you.
But when you had to leave
You left gifts behind,
A new appreciation for life
And people who've been so kind.
I do appreciate them all
Birds, animals and even bugs.
But I would trade every one
For one more of your hugs.
I wanted to let me readers know that I heard from Toni today. Toni is Brandon's mom, and as so many of you know, Brandon was Mattie's big buddy at the Hospital. Brandon got all of his blood work back today, and his news is very positive. He is No Evidence of Disease, but he will need to be monitored weekly because he continues to lose weight, which is naturally a concern. When I spoke to Toni last week, I immediately understood her fears and concerns. Once your child has been diagnosed with cancer, it is very hard to not live in fear. Every physical symptom brings about panic, and of course the first thing to pop into one's mind is that the cancer is back. As Toni went through Mattie's battle with me, she saw first hand that after being off of chemotherapy for six weeks, Mattie's cancer not only returned but returned with a vengeance. I can only imagine how Toni feels about Brandon being off of chemotherapy for a year and a half. Being on chemo isn't pleasant by any stretch of the imagination, but chemo in some ways gives you a false peace of mind. Because these toxic drugs make you think you are actively fighting the cancer, and on chemo you feel safer. Once your child is off of chemo, you live on the edge, waiting, hoping, and struggling. Struggling to try to live a "normal" life again, but in all reality as I say to Toni all the time, neither one of us will ever be normal again.
Lisa and her family live in Boston, so we do not get a chance to see each other that often. However, it was very special to receive hugs from our niece and nephews today. As I told them, they give the best hugs! In a way it is hard to believe how much older they are, especially since it seems like yesterday they were just babies. Time seems to have moved so quickly as I watch them mature. I see so many children around me growing up, and yet for me time is stuck at age 7, the age Mattie was when he died. For Mattie, he was robbed of this aging process, and instead experienced things I wouldn't wish upon anyone.
After our family visit was over, Peter and I went out for a drive. We went through Ocean City, MD. People have told us visiting this beach area is an experience, and they were correct. I never ventured out of the car, because it was raining, however, while driving, I became very quiet. Peter knows that is the tell tale sign that something is not right with me. I couldn't articulate what my issue was, so I remained quiet. When we got back to Ellen's house, I took Katharina's blanket with me, and went to sit outside on a chair. I listened to the ocean and the birds and fell asleep. When I woke up, my headache felt better, and though fatigued, I was in a somewhat better mood.
Peter and I had dinner outside, and then we went for a walk on the beach. Along our walk, we saw toads and even fireworks. It was all special sightings. There isn't much anymore that brings me joy, but seeing the ocean still makes me happy. I love the sight, the smells, and the sounds! In fact, as tomorrow approaches, which is our last full day at the beach, I am saddened to be leaving. Peter and I have developed our own routine here and a great deal of it involves being outside and walking, and appreciating the ocean. While walking with Peter by the ocean the past two days, he has gotten me to laugh. Particularly over our footprints in the sand. After we walk a bit, Peter has me turn around to figure out which prints are his and which ones are mine. Peter's are discernible, but we can never find mine. Peter's joke is he is walking with the invisible woman. I can't explain where my prints are, because clearly I am walking beside him, but it is eerie! Needless to say, it is a mystery that makes me laugh!
While writing tonight's blog, Ann called me. We chatted a while, and then her cousin, JP, came on the phone. Apparently JP enjoys talking to me, and likes to connect with me each day he is visiting Ann. I find it very sweet and touching, and he is looking forward to seeing me on Friday when I return to DC. Naturally returning from a vacation is NOT easy for me, and going home signals my return to being directionless and being without Peter by day. But because JP is so motivated to see me, it helps me redirect my focus. It is funny how another person can influence your life in such a way.
I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Just a note to let you both know I am thinking of you on this Tuesday and everyday. We went to the Jersey Shore over the weekend to visit with friends and as a result I am a few days behind on the blog. I hope you found some peace and a moment of true rest while you were at the beach... Much love and many thoughts."
The second message is from my friend, Charlie. Charlie wrote, "It seems as though this time away has been what you and Peter needed. The opportunity to connect with others when you are up to it and the choice to be alone when you are not. However, I have to say I am glad that you are making the effort to spend time with others as much as you can. Grief won't go away with time; you will always remember and ache for those missed opportunities, those things that Mattie won't get to do but you are doing what should be done in situations like this; you are growing, learning, and connecting and thereby honoring Mattie's time here in the most important ways. I don't think it is strange that your picture taking has shifted from Mattie who is no longer here to taking pictures of nature. When children are with us, our focus is more immediate and they fill our "view screen"; sometimes you even see things in the background of the picture you did not notice when you pushed the button. Without a child as the focus of the picture you look farther out and your view is more expansive. I think this evolution naturally happens as we age but yours has come much too soon. You are certainly thought about daily (and sometimes much more often) by many of us; thank you for the reminder that it is important not just to think about someone but to actually reach out as well. I hold you and Peter gently in my thoughts."
The third message is from my friend and colleague, Nancy. Nancy wrote, "Today, another Tuesday, marks a crossroad. Charlie and I each discuss the end of your first year without Mattie. I'm sure others do too. The Brown family has created a safe haven for many families. I know that you didn't want it to happen this way. Unfortunately, each of us encounters times when we get something we don't wish for or we are challenged to close a door when we want it to stay open. I know that you are struggling with what is in store for you next. Charlie's poem, Messages, was poignant. Her reference to hope, intense pain, confusion, joy, along with guilt and scars, you have experienced all of these. And, you still reach out to others and share a part of yourself. This is a special gift. One that Mattie learned too. As your heart heals a bit more, I believe you will find your answer. I pray that Peter and you had a day with beauty and calm. With love always and in all ways."
YOU ARE MY INSPIRATION by Nancy Heller Moskowitz
The world is filled with amazing things,
Butterflies, stars, a beautiful sun or moon,
All capture a piece of my time with you.
However, nothing brings me as much emotion,
As a memory.
You, my little boy,
A treasure, a challenge, an engaging soul.
I wrestle with my thoughts,
Of how to be each day.
Then grief reaches out to touch me,
An emotion, I'd gladly give away.
For grief keeps joy from brimming,
From my head down to my toes,
I knew it once. I hope it shows,
The road to follow, once again.
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