Thursday, December 17, 2009

Thursday, December 17 2009

Tonight's picture was taken in December 2007. One of our family traditions, was to take Mattie to the US Botanical Gardens (which is an indoor garden, that houses amazing plants and foliage from around the world) around Christmas time. The US Botanical gardens are decorated each holiday season in a very remarkable manner, particularly memorable is the use of plant pieces that are put together to create miniature sized buildings and even a town with a working train. If you look closely behind Mattie, you can see a miniature building in front of a Christmas tree. This structure is made completely of plant and tree parts, and Mattie and I would always examine the pieces and try to figure out what type of plant or tree these parts actually came from.

Poem of the day: My Little Man by Donna Rausch

Please forgive me for not speaking,
but I know you'll understand,
God came into my life and took "My Little Man"
The smiling face that greets me when he comes
home each day from school,
The one who gives me great big hugs and says
"Mom, I love you"
The one who I depend on to get me through the day,
When things get rough and sometimes,
blue skies seem so grey.
He was just a little tot,
so happy and carefree,
I find myself keep asking God
"Why did you take my son from me?"
He was my special little angel,
you couldn't possibly need more,
Now I sit here just waiting for him to walk through the door.
The house is "oh, so quiet" for he gave it so much joy,
God please send "My (son)" back to me,
he was just a little boy.
They say he's in a better place and surely is at rest,
The only comfort that I have is I know you only pick "the best"
So please take care of "My (son)" and love him like I do,
because if he can't be with me,
then I'm thankful he's with you.



Tonight's poem resonates with me because I always called Mattie, "my little man." It may be true that God picks "the best" to take back with him to heaven at an early age, however, I must admit I am not thankful Mattie is with God. To me he belongs with me. It is my constant daily struggle with God, to understand something that is absolutely incomprehensible!

Though I am certainly sleeping better than I have been since September 2009, I still have nights where sleeping is challenging. Last night was one of those nights. I was able to get to sleep, but I was unable to stay asleep. I felt as if I was up for most of the night, and therefore, this impacted my mood throughout the day.

I met up with Ann and we went to the mall together. It is ironic, I am surrounded by all sorts of holiday displays at the mall, yet to me, I am almost oblivious to all of this around me. Yes Christmas is a holiday of great importance in Christianity, yet to me, Christmas is also a state of mind. Though I appreciate the religious significance of Christmas, after all, how could I not? A couple gave birth to a very special baby boy, who would eventually be taken from them because his mission was to die, return to God, and teach us all a lesson about love, redemption, and eternal life. I deeply understand, in a very profound way, this amazing sacrifice Mary made to give up her only son. All my life I have heard this story each Christmas, but for some reason, this story pierces my heart like it never did before.

This evening Peter and I went to the first support group offered at Georgetown University Hospital for parents who lost a child to cancer. Three other families signed up for this group, but one family was unable to attend tonight. One family we already knew, and we had the opportunity to meet the other family tonight. The group was co-facilitated by Mary, the lead social worker of the Lombardi Pediatric Cancer Center, and Sharon, the Chaplain who works with all Lombardi Cancer families. In fact, Sharon was the chaplain who was in Mattie's PICU room with us for hours on the day Mattie died. Peter and I entered the group with no expectations. Each of us got to go around and tell our story, and of course we had a chance to dialogue with one another after sharing stories. One couple lost their son over two years ago. What startled me about this is that their grief is still very fresh, real, and raw even today. Which confirms my thoughts about the cliche, time heals all wounds. In fact, I believe some wounds will never heal, we may learn to live with them, but the loss of a child is not something you get over and I don't care how much time lapses by.

I had many emotions going through my mind while sitting at the meeting. Everyone around me was crying, yet I did not cry. Naturally that made me take notice, but then I quickly realized we are in different places. While they were crying, I was simply angry and hostile. I explained to the group that on any given day I am either angry or depressed. I realize that both of these families are further along in their grieving process than I am, and I imagine with time, perhaps I will be crying intensely. I certainly have my moments now, but for the most part, I am very aware of my anger and depression.

The group talked about the difference between how husbands and wives process the loss of a child. I was beginning to see that there were value statements being placed on things, such as this way to grieve is "good" and this way is "bad." I understand the sentiments behind that feeling, but I felt the need to speak up and say that there isn't a right or wrong way to grieve. We all do it in different ways, and we have to respect that. What works for me, I know doesn't work for Peter and vice verse. I also said that for the first time in our lives as a couple we just can't help and support each other. It doesn't speak to the quality of our marriage, but to the depths of losing a child. All the members of the group agreed with me, because it is impossible to support your spouse when you are immersed and drowning in the same issue.

Nonetheless, as the group continued on, I could feel I was becoming more angry by the minute. I tried to understand what was making me angry. Initially I was angry that I had to hear their stories. I know that sounds ridiculous, because that is what happens in a support group, but I am dealing with so much pain over Mattie's death, that I really did not want to invest in hearing about someone else's story or pain. I was taken aback by my feelings, because I perceived them as selfish, but then I realized I am not being selfish, I am protecting myself. I can hardly deal with my story, much less take on two more. Would I attend another meeting in the New Year? Probably, I don't think I can dismiss the group this quickly, without truly giving it a chance.

Peter and I continue to be amazed my how many "fans" the Mattie Miracle Cancer Foundation has on Facebook. Tonight, I was honored that Tricia's (one of our favorite HEM/ONC nurses) daughter became a fan. Tricia's daughter has some wonderful pictures from Mattie's March in May 2009 on her facebook page. Peter printed out one of the pictures for me tonight. It is a picture of Tricia and Mattie together at the walk. Mattie had a big smile on his face, and seemed so happy. Looking at the picture, it is hard to accept that only four months later, Mattie died.



I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Grief is a full time emotional job. I think you are doing well at honoring your feelings and your needs. It is good that you and Peter are getting out and reinforcing your connections to friends and those you care about; that is what makes life worth living. The pins sound perfect for the foundation; maybe you can post a picture and let people know if they can purchase one to honor Mattie and donate to the foundation. Tonight is the seventh night of Hanukkah and as always you will be in my heart and prayers as I light the candles tonight."


The second message is from my friend and colleague, Nancy. Nancy wrote, "When I woke this morning, the following words were running through my head:

Although it's been some time since I have written
I carry Mattie, Peter, and you in my heart.
Your week is measured briefly,
From Tuesday, it does start.
You're right, in that this day,
Will never be the same.
Yet, as I read your entries
One theme that does remain,
Is Mattie will never be far away from you
In spirit and in love.
His wind chimes, his song.
His many gifts clearly
Shown in many ways.
His body is at peace
But his memory will never fade.