Friday, September 11, 2009Mattie loved going to fall festivals and pumpkin picking. I can remember this day and taking this picture like it were yesterday.
Poem of the day (Thank you Kristi, my Nevada Osteo mom friend!):
Ask My Mom How She Is
My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie because she can't describe the pain.
Ask my Mom how she is,
She'll say"I'm alright.
"If that's the truth,
then tell me,why does she cry each night?
Ask my Mom how she is
She seems to cope so well,
She didn't have a choice you see,
Nor the strength to yell.
Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For God's sake Mom,
just tell the truth,
Just say your heart is broken
She'll love me all her life
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.
I am here in Heaven
I cannot hug from here.
If she lies to you don't listen
Hug her and hold her near.
On the day we meet again,
We'll smile and I'll be bold.
I'll say, "You're lucky to get in here, Mom,
With all the lies you told!"
As our Nation pauses today to acknowledge the tragedy that occurred on September 11, 2001, I find that great sadness fills my mind and heart. On September 11, 2001, I was two months pregnant with Mattie. It was a day that frightened me because it directly illustrated to me that there are evil forces alive and well in our world, and though we usually live with a false sense of security, we should not take those freedoms for granted. Now eight years later to the day, I no longer have Mattie by my side. Something I would never have imagined would happen, and to add insult to injury Mattie was cremated today. So September 11, now has various connotations for me, a day of sadness and loss for our Country but also a great personal loss to my family. We went to the funeral home today and met with Mark, our representative. He showed us Mattie's obituary proof for the Washington Post and he also gave us a box filled with all of Mattie's metal parts that remained after the cremation. These parts included the prostheses from Dr. Bob's limb salvaging surgeries as well as the wires that were placed in Mattie's chest during Dr. Chahine's sternotomy. Peter took all these parts out to examine them, and I quickly felt deep sadness come over me because this is all of the physical remains I have left of Mattie. These parts remind me of the great physical suffering Mattie endured this year. Mark told us that he personally drove Mattie's body to the crematorium in Virginia (the District of Columbia has NO crematorium facilities), and then told the person performing the task that Mattie was his "friend" and that he should be treated with kindness and respect. I was very touched to hear Mark say this, and I am beginning to see that a child's death stirs up feelings in almost everyone I meet. I asked Mark today how often his funeral home handles the death of a child. He said that the home performs one to two services a month for infants (infants who die in birth), but that a case like Mattie's is rare.
Mark also gave us copies of Mattie's death certificate today. On the certificate it says the cause of death is "Natural causes." I immediately questioned that, because to me NOTHING was natural about this. Cancer took Mattie away from me, and therefore, cancer is the culprit.
This morning, Peter, my parents, and I drove to the Visitation Preparatory School and met Olivia. Olivia is a SSSAS mom, and sits on the board at Visitation. The school is only about two blocks away from the Holy Trinity church and is the site that our reception following the funeral will be hosted. Olivia was kind enough to walk us through the site, explained to us the meaningful history of the beautiful campus, and discussed different ways to configure and set up the rooms for the reception. One thing rings true to me, Mattie connected me to people and his communities in profound ways. I am SO grateful that Olivia wants to help us, that Ann and Alison steadfastly remain in their roles, and that we have the support of both RCC and SSSAS families as we move forward and plan these events.
It is our intention to have two different ceremonies to acknowledge Mattie's incredible life and spirit. One will be a Catholic mass and reception, and the other a Celebration of Life ceremony. The Celebration of Life event is intended to be more active and lively in which the opportunity to share Mattieisms, reflections on Mattie's life, and Mattie stories will be possible. We are fully aware of the sorrow and the pain caused by Mattie's death on our entire community, and though we want to acknowledge this and try to come to peace with this (if that is even possible!), we also feel it is vital to provide the setting for all of us to share in what made Mattie so special. Peter always said that "once Mattie hooks you, you are hooked, and it is only a matter of time until you love him."
My parents, Peter, and I went out to lunch together today. We talked about funeral readings, music, and a whole bunch of other subjects. My mom and I reflected on the incredible suffering that Mattie endured this year. Please remember that Mattie started taking oral Morphine back in July 2008, because the pain from his tumors was so intense. Peter and I saw Mattie live through the nausea, fatigue, and neutropenia associated with chemotherapy, the INTENSE pain from limb salvaging surgery (of which I have gained great respect for this procedure, and really believe from witnessing the pain, that there is nothing else comparable to it!), pain from his sternotomy, and let's not forget the pain associated with trying to move his body and learn to use his arms and legs again. In a snapshot, Mattie lived a great deal of this past year in pain, and if it weren't for his friends, the amazing HEM/ONC and PICU nurses, the HEM/ONC doctors, and special people like Ann, Alison, Linda, Jenny, Jessie, Jey, Debbi, Brandon, Jocelyn, Bob W., Mary R., and his childlife interns, he would have had a torturous year in which I would be wondering whether this was all worth it. Was it worth it? MOST DEFINITELY! We had to live our lives this year with the thought that Mattie was going to beat the odds, that someone has to survive multifocal osteosarcoma, so why not Mattie? In addition, through Mattie, my eyes were opened to the true compassion and love that are within people. Through Mattie's suffering, he gave us many gifts. The gift of his love, his AMAZING and non-stop trust in us, and his passion for life. Mattie's life was a gift, and if we allowed this gift to be present on this earth 13 extra months, then to me we did the RIGHT thing.
On our way home today, we noticed that a local school was letting out for the day. We saw kids streaming out of the building and into the streets. All of us had the same reaction, that we will never see Mattie doing this ever again. That he will not be able to grow up, that we will not be able to share in his life, and that at the core, our lives are isolated and without purpose. Amazing what you can think of just by seeing children exit a school building.
We said good-bye to my parents tonight as they are headed back to Los Angeles tomorrow, and they will return in a few weeks for the ceremonies. Their presence helped a great deal, and eased the loneliness we feel. On Saturday, Peter's brother is coming into town for the weekend to spend time with Peter. To get ready for Chris' arrival, I decided to change the sheets in Mattie's bedroom. I did not realize how challenging a task that was going to be. Needless to say I removed Mattie's sheets, but I refuse to wash them because they smell like Mattie. I cling right now to things that remind me of Mattie, and in fact when my mom talked with me about reorganize things, I had no response. How do I give away Mattie's toys and things? I have no idea! Maybe in time I will have the courage to do this, but right now, nothing is MOVING! Right now it takes every ounce of energy I have to get up in the morning and get dressed.We would to thank Dawnee today for a lovely lunch, which we will enjoy tomorrow, and we would like to thank Tamra for a very generous dinner. We thank both families for their constant love and support!
I would like to share five messages with you today and a song that means a lot to Mattie and I. The first message if from Jey, Mattie's "big brother" and favorite CT tech. Jey wrote, "I want to apologize for not writing sooner but I haven't been able to get my mind around the reality that my little brother is no longer, in fact as I write this I am in tears It hurts and I am so deeply sorry for the heartache that you have been forced to deal with. I pray that you find a sense of peace and comfort in knowing that Mattie is watching over the family and helping to guide the steps that we take in life from this day forward. I cannot imagine how it has been for you guys living without Mattie being in your physical presence but I do have an idea only because of who I became to the family. Mattie has changed my outlook on how children should be treated who have been forced to deal with this HORRIBLE DISEASE. It should be a written law that we who are in the health care field should do everything we can to make sure that they have no suffering and that the family be taken care of and not have to do anything as they face this ordeal. I truly hope and pray that in the days to come that both you and Peter are able to continue to grow with each other, comfort each other, and know that Mattie was given the best parents a child could have asked for and considering he liked to design everything he could imagine not even he could have designed better parents. I LOVE YOU GUYS and If I can do anything to make things a little easier in days to come just let me know and I will see what I can do. Mattie is forever my little brother as you are forever my friends."
The third message is from Debbi, our Sedation nurse angel. Debbi wrote, "Vicki and Peter, I can't get you and Mattie out of my head and heart today. The deep ache I feel in my heart just reminds me how exponentially more it is for you. I must thank you for letting me into your lives and sharing with me the joy that was Mattie. If I helped you get through this torture in any small way, I am grateful. The time at his bedside yesterday and today showed me even more the bonds of love and trust between you all; bonds that will never be broken. You as parents shouldered the pain and did everything to ease your child's passage.
I have been thinking about a quote from the book "Little Women" this evening. When the daughter in the story died, the family looked upon their child's
" face upon the pillow, a face so full of painless peace that those who loved it best smiled through their tears, and thanked God that Beth was well at last."
This was Mattie's face today. As hard as this day was, to see the peace in his face after death was an affirmation to me that all you did was right and true for him. Please know that my thoughts and love are with you."
The fourth message is from one of Mattie's outstanding HEM/ONC nurses. Miki wrote, "I know that whatever I say, whatever I do, can not fill your loss. I really wish I could come up with some magic words that can make you feel better right away... But you've got hundreds of people who love you, care about you and think of you all the time... and I am one of them. You are not alone... Thinking of you..."
The final message is from Meg. One of Mattie's favorite childlife interns and physical therapy racing buddy. Meg wrote, "Vicki and Peter, I am at an absolute loss of words for your loss. Words cannot begin to express my deepest sympathy. I have spent all day thinking about Mattie and how much he loved you both. I am so grateful to have met your son and have so many wonderful, funny and fond memories of Mattie. Mattie will be a constant reminder of true love and happiness for me. I don't think I have ever been happier than I was when I was able to make him smile. OH that smile. It could make everything problem disappear. I know there isn't anything I can say to make this better for you. Just know that I love your family and the both of you mean the world to me. I wanted to end this email with some song lyrics that will always make me think of Mattie and his strong, beautiful spirit."
Ive been cheated by you since I don't know when
So I made up my mind, it must come to an end
Look at me now, will I ever learn?
I don't know how but I suddenly lose control
There's a fire within my soul
Just one look and I can hear a bell ring
One more look and I forget everything,
o-o-o-ohMamma mia,
here I go again My my,
how can I resist you?
Mamma mia, does it show again?
My my, just how much Ive missed you
Yes, Ive been brokenhearted
Blue since the day we parted
Why, why did I ever let you go?
Mamma mia, now I really know,
My my, I could never let you go.
Ive been angry and sad about the things that you do
I cant count all the times that Ive told you were through
And when you go, when you slam the door
I think you know that you wont be away too long
You know that I'm not that strong.
Just one look and I can hear a bell ring
One more look and I forget everything,
o-o-o-oh Mamma mia, here I go again
My my, how can I resist you?
Mamma mia, does it show again?
My my, just how much Ive missed you
Yes, Ive been brokenhearted
Blue since the day we parted
Why, why did I ever let you go?
Mamma mia, even if I say
Bye bye, leave me now or never
Mamma mia, its a game we play
Bye bye doesn't mean forever
Mamma mia, here I go again
My my, how can I resist you?
Mamma mia, does it show again?
My my, just how much Ive missed you
Yes, Ive been brokenhearted
Blue since the day we parted
Why, why did I ever let you go
Mamma mia, now I really know
My my, I could never let you go
I end tonight's posting with a song called "Baby Mine" and it is featured in the Disney movie, Dumbo. Mattie and I loved this tender scene in the movie between Mrs. Jumbo (the mother elephant) and her son, Dumbo. In fact, when Mattie was a baby I would hum this song to him as a lullaby.
http://www.youtube.com/watch?v=2oSdgIDyl6Q&feature=related
No comments:
Post a Comment