Thursday, September 9, 2010

Thursday, September 9, 2010

Tonight's picture was taken in June of 2009. What I love about this picture is it shows Mattie's playful side. He literally took one of my kitchen sponges and had Peter transform it in Sponge Bob Squarepants. Naturally there is a story that goes along with Sponge Bob. Mattie knew I strongly disliked Sponge Bob, the TV character, and did not allow him to watch the show. However, one day in clinic, he was having a bad day from a reaction to MTP-PE (the experimental treatment he had once per week). As he was whisked into a clinic room, and placed into bed, we turned the TV on to try to distract him. Well it worked, because guess what was on? Sponge Bob! He was glued to it, and I wasn't happy about it, but I got over that quickly, because it made him less tense and happy. He teased me for weeks about Sponge Bob, and he would announce to everyone at the hospital that he loves Sponge Bob, even though his mother did not. So the teasing only continued at home, as you can see with my kitchen sponge that was turned into Sponge Bob! Naturally Sponge Bob needed a swimming pool in the middle of our living room too! With Mattie, the creativity never ended.


Poem of the day: In loving memory by Charlie Brown


Yesterday was the anniversary
Of your death a year ago
And though 365 days have passed
Our recovery is very slow.
Anniversaries are supposed to be happy
Full of cards with words that rhyme.
But this one is a sad one
As it will be for all time.
We saw your friends and classmates,
Neighbors and teachers too,
And all of them told us,
That they still keep missing you.
We remembered you in a service,
And all of us could see,
How the cranes added their colors,
To the green leaves of your tree.
Other people wrote messages,
About how they remembered you.
And some wrote how your life,
Made them appreciate things anew.
So don’t worry, you’re not forgotten
Your spirit will always reside,
In the hearts and minds of your loved ones,
Safely tucked away inside.

I did not explain my frustration with writing last night's blog, but I assure you it was HUGE! I wrote Mattie's anniversary blog and was ready to post it by 11pm last night. However, when I went to post it, the system froze and I lost EVERYTHING that I wrote. It took me two hours to put the blog together and even more time to upload pictures. When I lost everything I was mortified. I did not know if I could recreate what I wrote, nor did I know if I had any energy to do this. But as always, if it involved something with Mattie, I found the energy and strength. I couldn't let his first anniversary pass without documenting the day.

So basically I wrote last night's blog twice, and I never find that my second editions are as powerful as my first editions. None the less, when my dad and my friend Mary wrote to me today, to let me know how powerful and beautiful last night's blog were, I smiled. I so appreciated that feedback especially after my ordeal which left me up writing at 1:30am!

I wasn't sure how I was going to feel today. However, I appreciate my lifetime friend, Karen, checking in on me periodically, sending me an interesting article about the students attending her school this year, and encouraging me to watch a cooking show with her tonight. She of course lives in NY and I live in DC, but we email back and forth about our reactions to what we are watching. We did this as kids (watching Julia Child), of course back then there was NO internet, and we used the phone to critique Julia's humorous style!

My friend, Alison emailed me today to find out how I was. As many of my loyal readers know, Alison was our communications coordinator for Team Mattie as well as oversaw the Team Mattie funds. Though I wasn't sure I wanted to leave our home today, I did meet up with Alison and we chatted. I told Alison that I am always in amazement how someone like herself, who did not know us well at the time Mattie got sick, could sign up to become such a vital part of Team Mattie. Frankly, I am not sure I would have done the same, because this role was daunting and down right depressing at times. I do not know where Alison got the strength to rise to the occasion, but it does show me the beauty of the human spirit and the importance of human connections. As I was talking to Alison, I realized one of my passions is not only helping children with cancer, but specifically helping those who are dying from cancer. In fact, maybe because Mattie's battle is so fresh in my mind and heart, I have trouble at times accepting that many do survive from cancer (thankfully of course!). But I wouldn't be Mattie's mother if I did not have a pain in my heart knowing that others survive and Mattie did not. I understand the pain of living with cancer and dying from cancer, and I know what that looks like, feels like, and I also know there is NO right or wrong way to handle this. In that respect having the personal insight into this, I feel, can only help families through this lifetime grieving process. Needless to say, I appreciated this opportunity to share how I was feeling, and as we move passed Mattie's first anniversary, I am sure my numbed state will subside, and of course when that happens, this is when I will feel things the most.

While talking to Alison, I also started thinking about the blog and what it means to me. The blog means so many things, but I think as its purpose has evolved from its original goal (as a form of communication about Mattie's condition), it now serves as an important symbol to me. The blog has become my daily journal of memories and feelings about Mattie and the impact of his loss on our life. Grieving is about REMEMBERING, never forgetting, and for me writing each day enables me to keep Mattie's memory alive. I am not sure what missing a day of writing would be like, and right now that thought would feel disrespectful to Mattie. Certainly whether I write the blog, Mattie's memory will always be alive and well in my mind, I get that cognitively. But emotionally, keeping Mattie's memory alive by writing each day gives me purpose, and I feel it is important for others to know just how special our seven year old was and what we can learn from this horrible process.

This afternoon, I spent some time in Ann's garden. While trimming flowers, this green cutie came out to say hello to me (like the one in this picture). A praying mantis! I have never seen one in Ann's garden before, and he was sitting there in his prayer position waiting to find a bug or worse yet a butterfly to eat, I couldn't help but stare at him. Mattie would have been down right fascinated! Most likely he would have run into Ann's house for a jar to capture it and take it home! I always have a butterfly to two come and greet me in Ann's garden, but this fellow was a first for me!

This evening, Peter and I went out to dinner together and had the opportunity to talk about our day and also about Mattie's Foundation. Somehow removing ourselves from home, enables me to focus better and brainstorm next steps.

When I got home, Karen reminded me to turn on the TV, and we watched "Come Dine with Me." It is on BBC America, and these folks make Julia Child look tame. Though it is about friends cooking meals for each other and getting evaluated on each dish, I can't help but comment more on the cast of characters eating the food than the food itself. Each of these folks is filled with personality and you just can't help but want to make a comment or two about them. Certainly a humorous diversion!

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I read about all the lovely things that people did in memory of Mattie. I was especially moved by the beautiful cranes in the tree and I remembered how Junko made cranes when we were all still hoping Mattie would beat the cancer. I know that I never see a butterfly or hear a wind chime without thinking of Mattie; clearly from the messages on the blog, others have their own reminders of that special little boy. It was a shock to read that his classmates were starting 3rd grade; one tends to forget how quickly time passes. As you start this next year without your beloved son and continue on your path, I hope there are more good days than bad. I hold you gently in my thoughts."


The second message is from my friend and colleague, Nancy. Nancy wrote, "Yesterday, was the beginning of our High Holidays and I took a break from my cooking to spend a moment with all of you. It was 4 o'clock and I remembered that all of you would be at Mattie's Tree. In so many ways, if something can be perfect, this tree is. A tree develops strong roots and can grow for many years. Mattie couldn't do this in life, yet, he will with this tree.The cranes are beautiful. Along with the feeder and wind chimes, this will be a much loved and visited place on the school campus. Your table looked great and another tribute to Mattie ( cupcakes). Margaret really captured the afternoon. I just finished reading the blog. So many voices all echoing the same message: Your generosity, strength, love, humor, tenacity, sense of commitment and advocacy all were infused in Mattie. You were the 'Wind beneath his wings" and he is the rock for all of us to stop and rest on. With love always and in all ways."

The third message is from my friend and colleague, Denise. Denise wrote, "Tonight I came across this message in my "Drafts" folder from 12/27/09. I have no idea why it was never sent, so even though it's 8+ months late, I thought it might be a nice way to remember Mattie on this day. It continues to amaze me the "power" of Mattie's persona (even after his passing). I was never blessed with the opportunity to meet him face-to-face, and yet I feel like I know him. He brought you and I together after 12 years of separation. And without ever meeting him, I am still reminded of him on a regular basis through my various day-to-day activities. As such, I've been thinking about you and Mattie a lot these last few days. On Christmas Eve, we attended the Children's Mass where the kids did a processional of Mary and Joseph, as well as all the animals where were present for Jesus' birth. There was also a " shining star" as part of the processional, and my 4-year-old leaned over to me asked, "Where's the moon?" after I had pointed out the star to him. My immediate thought was, "He's no longer here." And I had to hold back my tears. (I associate the moon with Mattie because of what he called you...Una Moon.) Shortly after that point I realized I was wearing the same outfit that I wore to Mattie's Celebration of Life service, (not that big of a shock, seeing as I don't really have many nice clothes as a stay-at-home mom like I once did for the office;-). But it still led me to reflect on you and what a Herculean feat you and Peter were left to deal with. The last 24 hours in my house have been filled with people assembling LEGOS -- both my boys, my husband, and even my dad got in on the act. I can't help but think of Mattie each and every time I walk past one of these building sets. I finally sat down today to catch up on the last couple of days of your blog, and my husband stuck his head in my office to see what I was doing, and immediately knew. "Oh, Mattie Bear?" is all he said to me. So, you see, we are all remembering Mattie this weekend -- even those of us with the most distant connection. That further speaks to Mattie's "power." I am so deeply sorry that your sun (and moon) have been ripped away from you."