Thursday, December 24, 2009

Thursday, December 24, 2009

Tonight's picture features Mattie in front of our tree in December 2007. Though we celebrated Christmas in Florida that year, we still decorated, and Mattie set up his Christmas train around the tree. The train was an important holiday decorating tradition for Mattie.

Poem of day: Don't Tell Me by Judi Walker

Please don't tell me you know how I feel,

Unless you have lost your child too,

Please don't tell me my broken heart will heal,

Because that is just not true,

Please don't tell me my son is in a better place,

Though it is true, I want him here with me,

Don't tell me someday I'll hear his voice, see his face,

Beyond today I cannot see,

Don't tell me it is time to move on,

Because I cannot,

Don't tell me to face the fact he is gone,

Because denial is something I can't stop,

Don't tell me to be thankful for the time I had,

Because I wanted more,

Don't tell me when I am my old self you will be glad,

I'll never be as I was before,

What you can tell me is you will be here for me,

That you will listen when I talk of my child,

You can share with me my precious memories,

You can even cry with me for a while,

And please don't hesitate to say his name,

Because it is something I long to hear everyday,

Friend please realize that I can never be the same,

But if you stand by me,

you may like the new person I become someday.

I spent the entire day at Ann's house. She had a Christmas Eve brunch this morning, in which she invited many neighbors and friends. Mary, Ann's mom, was also at the brunch, and Ann's cousins, Helen and Ed, from Massachusetts were also visiting. In fact, I met Ann's cousins a year ago today. They came to visit Mattie at our home, and Ed was dressed as Santa Claus. Mattie was surprised, and very willing to accept a gift from Santa. I will never forget how Ed and Helen tried to make Christmas Eve special for Mattie last year. In addition, after Santa gave Mattie a present, Dr. Bob gave Mattie a present of his own. Bob removed Mattie's leg cast that he wore post surgery for over a month. So there was a great effort last year to try to make Christmas memorable for Mattie.

Unfortunately for the three of us last year, Christmas was a very challenging holiday. Mattie was recovering from surgery, was still in pain, dealing with PTSD symptoms, and naturally with all of these things was very moody and depressed. It was a Christmas that I look back on now with great pain. I can safely say that Mattie had NO joy last Christmas, and it was painful for Peter and I to watch the ravages of cancer on Mattie's body, mind, and spirit.

I think I was able to get through Ann's party today because I stayed with Mary and focused on helping her eat and chatting with her. I think if my mind really did stray to the tone of the day and the holiday, it may have been too overwhelming for me.

Ann's cousin Ed, dressed up as Santa for the kids at the brunch. Ed has been entertaining kids at Ann's house for 11 years now, and he does make a jolly and happy Santa, who seems to catch the interest of kids of all ages. Bob snapped a picture of me sitting on Santa's lap today. Naturally, I couldn't help but feel that Mattie should have been at this party today. I know he would have laughed to see me sitting on Santa's lap!

Later today, Alison (our Team Mattie Fund and Communications Director) came by Ann's house and brought Christmas gifts for us. I unwrapped my gift, and Alison got me a gift that Mattie would have approved of. It is a plastic sheep candy dispenser, wearing a Santa hat. The catch is this is a "pooping" sheep, who delivers brown jelly beans. Mattie had a collection of "pooping" plastic animals, and he got a kick out of them. In fact, Alison, Mattie, and I played for about two hours one day, acting out all sorts of play scenarios with these "pooping" animals he had. So it was very fitting to receive the pooping sheep today, Mattie would have been thrilled to add it to his collection.

I went to Christmas Eve mass today with Ann and her family. As many of my readers know, I do struggle with my feelings about God. I just have so much anger about Mattie's illness and death. At church I sat between Mary and Ann. Somehow this was the support I needed to make it through the mass. Peter and I had dinner at Ann's house, and after dinner, we played a Christmas Trivia game in teams. Some of the questions were down right hysterical. For example, how many pounds of turkey does the average American consume between Thanksgiving and Christmas? These questions, and how we were brainstorming answers, made me laugh. I haven't laughed like this in a long time. Of course, laughing is good medicine, but then I always have a tinge of guilt after this, because I feel that maybe I shouldn't be laughing or having a good time so soon after Mattie's death. Naturally this may not make sense, and I know I deserve to laugh and Mattie would want this, but I still can't help how I feel.

Between the trivia game, and trying to help Ann clean up tonight, I landed up laughing quite a bit. Something as simple as changing a garbage bag, became a comedy show. Helen and I were holding the trash bin, and Ann was tugging at a very full garbage bag to try to remove it from the bin. It was so difficult, I was on the floor holding the bin from the bottom and Helen was holding it from the top, and Ann was tugging away. We kept telling her to pull or push, and at one point Ann and I realized it sounded like we were talking about childbirth rather than removing a garbage bag. My description may not sound funny, but all three of us were laughing hysterically.

I would like to share an article that Charlie shared with me today. I related to the sentiments expressed by the mother in this article, especially when she says that after her son died, she in many cases had to learn to allow other people to give her the reason or meaning to get out of bed in the morning.

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Still nurturing the inspiration In the 'heartsongs' that Mattie Stepanek left behind, his mother finds a reason to live By Kim Lawton Saturday, December 5, 2009

It's standing room only at the Borders bookstore in Bethesda, where Jeni Stepanek is talking about her new book, "Messenger." The book is about her son Mattie, the inspirational poet who died five years ago at 13 after battling a rare form of muscular dystrophy.
Because of the same disease, Jeni Stepanek now uses a wheelchair.

In his short life, Mattie wrote six books of poetry and a collection of essays that he collaborated on with Jimmy Carter. The Rockville youth made it to the New York Times bestseller list. He became a friend to the rich and famous. He touched millions of people around the world with his message of hope and peace.

"Since he died, I've hit some very, very low points," his mother told the PBS show "Religion & Ethics NewsWeekly," taking frequent draws on an attached breathing tube. "I have had mornings where I'm not quite sure what the sane reason is to bother getting out of bed." But she added, "I always find one, and if I can't find one, what I've learned is to allow other people to give me a sane reason to get out of bed."

One of Stepanek's biggest reasons for making it through the day is her effort to keep her son's legacy alive. Before he died, Mattie said: "God has given me a very special opportunity that I should not let go to waste. I use the gift he has given me." From the time he was a little boy, Mattie told his mother that God was putting messages in his heart. He gave voice to the messages through his poems, which he called his "heartsongs."

His mother said there were several basic themes. "Hope is real. Peace is possible. And life is worthy," she said. "The best I can understand it is that it really is the universal truth. It's what Jesus Christ taught us. It's what Gandhi teaches us. It's what Martin Luther King teaches us. . . . In giving, we shall receive; in doing good, good happens."

Since Mattie died, Stepanek has received thousands of letters and e-mails from people who say he continues to inspire them. There is even a grass-roots movement that is trying to open an official investigation into whether Mattie should be recognized as a Catholic saint.

People "have contacted me to say they believe Mattie has interceded in their lives," she said. "They believe that Mattie has healed their child or touched their spirit or turned them back to God or prevented them from committing suicide." As the person who knew her son better than anyone, she finds it humbling -- and a bit overwhelming.

"I feel the responsibility to share with people the truth of my son's life," Stepanek said. "What I don't want people doing is . . . putting him up on a pedestal -- that he's a little guru; he was perfect; he never got angry; he never got sad; he only spoke bits of wisdom. That's not who Mattie was."

Stepanek chairs a foundation named for Mattie that tries to make his message as accessible as possible, including school curriculum projects based on his writings.
As her health deteriorates, Stepanek, 50, has also become an inspiration to many. Mattie was her fourth child to die of the disease she didn't know she was carrying. Her condition was diagnosed when Mattie was nearly 2, after her two eldest children had died and her third child was dying of the disease.

"When Mattie died, that's when the grief became so overwhelming, because where do you put your mommy role?" She said her faith has helped her cope and has grown dramatically, although she has questioned God at times.

"I'm very good at, through prayer, giving God a to-do list: 'Dear God, this is where I need you, and this is how you can meet my needs.' . . . I think I began to realize toward the end of Mattie's life, prayer is not just giving God your wishes. It's asking to bring God into whatever the moments are in my day," she said.

Although people tell her that they have felt Mattie's spirit after his death, she never has.
"What I would give to have my son come and stand and just say 'hi' or 'yo,' just say anything, just touch me," she said. "But I know that would be wrong. And I think my son is wiser than that. Because if my son came and spoke to me or touched me . . . I'm afraid I'd never emotionally or physically be able to move from that spot."

She said Mattie has given her the hope and faith to move forward. "He said, 'When I'm gone, promise me you will choose to inhale, not breathe merely to exist.' And that means finding some worthy reason to move into each next moment," Stepanek said. "And that's the most difficult choice I face every single day." But, she said, "it's the most worthy choice."
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I believe when there has been no crisis in your life, you tend to overreact to the small things. So it may be with some of these moms whose lives so far are pretty untouched by the tragedies that life can and does bring. Some people go a long time before that happens while others suffer early in their lives.You can see and hear the difference when you talk to them; I can often tell which student counselors have suffered personal losses in an initial conversation that never even touches that subject. A lot of people still believe that avoiding the subject of our deceased loved ones will keep us from grieving but that's wrong; we think about them a lot and all that the avoidance does, is convince the griever that you don't care or that you don't want to connect at the real level. I am sorry that yesterday was such a difficult day and that you are still suffering from those headaches. I think it is wonderful that both Peter and Ann take the time to get to the real feelings that you have and help you express them; this is a painful but necessary thing to do so that your heart can eventually "heal" although it will always have a big scar upon it and it will never look as it did before Mattie died. I wish you an oasis of peace in the midst of the grief today; may you have a space in which to catch your breath. I hold you gently in my thoughts."

Charlie sent me the link to the Rascal Flatts' song entitled, Here Comes Goodbye. I have heard this song numerous times, but never saw the video until today. I always thought the song was about a woman who was breaking up with her boyfriend. I was VERY wrong. It is about a woman who lost her father and her son. I have attached the link if you want to see if for yourself.

http://www.youtube.com/watch?v=1Uq3nI11w4g