Message of the day: Happy NEW YEAR!!!! May 2009 be a better year for Mattie!
At midnight tonight, Peter, Mattie, and I will be up and saying a New Year's cheer and blessing for all of you in our lives. Robert Burns said it best....Auld Lang Syne or to the good old days (or the ways things used to be for us!).
Auld Lang Syne
Should auld acquaintance be forgot,
and never brought to mind?
Should auld acquaintance be forgot
and days of auld lang syne?
For auld lang syne, my dear,
For auld lang syne,
We'll take a cup o' kindness yet
For auld lang syne.
Mattie was looking forward to his playdate today! Ellen, Charlotte's mom, invited our family and the Cooper family to a luncheon to celebrate Charlotte's 7th birthday. Charlotte, Campbell, and Mattie were like the three amigos when they were in kindergarten together last year, and I think all three of them miss this camaraderie this year. Normally I would be concerned about Mattie meeting up with his friends, because lately he has been on the nasty and gloomy side when interacting with them. But something about his mood today, gave me the inkling that he was set to have a good time. I am still not feeling well, and since it is cold and blustery out, I stayed home. But Peter took Mattie to the celebration. I really wanted to be there today, to see Mattie with his friends, and having a good time. In fact, I practically took every over the counter cold remedy to try to feel better. I got Mattie ready for the party today, and he was very cooperative and practically jumped in his wheelchair and was waiting by the door for Peter to take him.
Charlotte's family celebration started at a Japanese restaurant in Alexandria. The kids sat in front of a hibachi table. This was very exciting for Mattie, since he never had experienced this before. He absolutely loved it. Peter caught some great pictures of the kids, watching in awe as the chef was cooking. In fact, when I asked what Mattie loved about the restaurant the best, he said he loved the volcano made out of an onion. In fact, you can see the flaming onion in the right side of the picture.
From left to right: Campbell, Charlotte, Mattie, and Livi (Campbell's sister)
I also love this picture of Charlotte blowing out the candles on her cake. Look who is also blowing out the candles (and I don't mean Charlotte's mom)!!
It meant a lot to us that Charlotte's family included us in their family birthday tradition. The family celebrates Charlotte's birthday each year by having lunch and then seeing a family movie together. Charlotte loves this because her siblings are usually home from school during the holidays, so this is a special reunion for her. I am just so honored and happy that Mattie was included in this wonderful tradition this year. After lunch, they all went to see the movie, "The Tale of Despereaux." Mattie enjoyed that too, but I think he simply loved the fact that he got out of the house and did something with his friends. For today Mattie was simply a kid. Though I wasn't there to see any of this, when Mattie got home, he was energized and talking. He had a good time and shared part of his afternoon with me! Today was a real gift, the gift was that we got a glimpse of the old Mattie. The Mattie who loves life, his friends, and having a good time. It was important to see this side of him, because it is a side Peter and I rarely see much of anymore.
We want to thank Margaret for a wonderful dinner tonight. Margaret was headed out of town today, but she made sure before she left that she brought us a lovely dinner. In addition, Margaret is a baker and holiday cookies are a tradition in her house. We thank Margaret for all the wonderful cookies, the gingerbread house kit, the mandala coloring book, and my "thinking of you" angel. You can never have enough angels around! Peter loves the eggnog, and that made his night! I appreciate you starting off 2009 on a good note for us.
I received a special gift in the mail today from my friend Catherine (a RCC mom). The book is entitled, "Heartsongs" and it was written by a young boy by the name of Mattie Stepanek. Mattie wrote these poems when he was just a child. In fact, he was a child who had a rare form of muscular dystrophy and he lost his three siblings to this disease as well. Mattie wrote this about himself:
"I am Mattie J.T. Stepanek.
My body has light skin.
Red blood, blue eyes, and blond hair.
Since I have mitochondrial myopathy.
I even had a trach, a ventilator, and oxygen.
Very poetic, I am, and very smart, too.
I am always brainstorming ideas and stories.
I am a survivor, but some day, I will see
My two brothers and one sister in Heaven.
When I grow up, I plan to become
a daddy, a writer, a public speaker,
And most of all, a peacemaker.
Whoever I am, and whatever happens,
I will always love my body and mind,
Even if it has different abilities
Than other peoples' bodies and minds.
I will always be happy, because
I will always be me."
As I was reading the book today, I was inspired by Mattie's writings. So I decided to google him. His website is maintained by his mom, since Mattie died before his 14th birthday. I was so saddened to read this, because this was a boy with a lot of potential, passion, spirit, and joy for living. I want to share two poems he wrote that caught my attention. To learn more about Mattie, you can go to his website: http://www.mattieonline.com/
"Circle of Happiness"
I am a little kid
For you to love.
I am a little kid
For you to hug and kiss.
I am a little kid
For you to say,
"You are so special,
Yes you are" too.
I am a little kid
For all of those things
And more.
And when you
Feel and say and do
All of those things,
I will be a little kid
Who will love you.
I will be a little kid
Who will hug and kiss you.
I will be a little kid
who will say to you,
"You are so special, too,
Yes you are."
I will be a little kid
Who will do all of those things
And more.
And that is what
Happiness
Is all about.
"Important Things"
When I grow up,
I think maybe
I will be a snowman,
Because when it
snows outside,
I'll already be cold
And like it.
And children will
Play with me,
And laugh
And sing
And dance
All around me.
And those are important
Things to have happen
When you grow up.
As I sign off for the last time in 2008, I want to wish you and your families a very happy, healthy, and meaningful 2009. We are honored that you read our blog, that you have the courage and strength to walk this journey with us, and that you are a part of our lives. Through Mattie's illness, Peter and I have come to understand, appreciate, and value the true power, love, and support of our caring community.
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