Mattie Miracle 15th Anniversary Video

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

August 24, 2010

Tuesday, August 24, 2010

Tuesday, August 24, 2010 -- Mattie died 49 weeks ago today.

Tonight's picture was taken in August of 2009 in the Georgetown Lombardi Clinic. This photo seems to be saying so many things. As you can see Mattie needed oxygen, and yet despite that was sitting at the art table ready for an activity. You can also see he has two cups to his ears. Most likely he was giving those around him a subtle message that we were being TOO loud. He wanted to shut us all out. As I observe what I am doing in the picture, I see that I was flushing out Mattie's central lines. I had to struggle to remember why I would be doing this, since in the hospital, the staff was required to do this, and really wouldn't allow me to take on these responsibilities. Ironic, since Peter and I were the ones doing this at home. However, the only thing I can conclude was that Mattie was hooked up to an in-home pain pump in clinic, and therefore, this was the reason I was allowed to take on this task in the hospital. I always travelled around with syringes, alcohol pads, and heparin. It was just standard issue for me back then.


Poem of the day: The Illness of Grief by Charlie Brown


Why does grief cause illness
I think the body catches it
From the heart.
There is a reason for the term
"Heartsick" and I,
Have that and more.
There are scientific explanations
About immune systems and
Lowered resistance to disease.
What I know is that,
While the heart weeps,
The body cannot heal.
The antidote to this is joy.
A medicine my heart cannot yet accept
And use except in measured doses.
I will be well
When my heart hears your name
And I laugh for the sheer joy of having known you.


As Mattie died 49 weeks ago today, I find myself being very reflective. I read the blog from August 24, 2009 today, and it brought back so many memories of the pain Mattie suffered toward the end of his life. In fact, last year on this day, Mattie had a rough time filled with crying and screaming from pain. Until Peter and I replaced his fentanyl pain patch, Mattie's day was simply torturous. You have to wonder how he made it from day to day, and in turn I have to wonder how Peter and I made it as well. Frankly when I look back at what we lived through, and now survived, it is absolutely no wonder that my body is so exhausted and depleted. Cancer has affected me physically and psychologically, not unlike Mattie.

True to form, Patches (our cat) made sleep impossible last night. But I was so tired and not feeling well, that I was able to wake up, deal with her, and go right back to sleep. Patches has been with us for 12 years now, and what you need to understand is that she was an abandoned cat. Her previous owners threw her out on the streets of DC. Patches was in bad shape when she came to us, literally walking to our doorstep. She was shot by a bb gun, and was quite ill. So we have a long history together.

My mom saw the doctor today, and continues to improve with each day. We spent part of the day together, and then literally we all rested midday because we are suffering from different types of exhaustion. I rarely nap, but I shut down for an hour.

Pictured from left to right: Ziad, my mom, Vicki, Amany, and my dad

This evening, we met my friend, Amany, and her husband for dinner. Amany and I went to graduate school together, and have been friends and colleagues for over 15 years. We had a nice time chatting about a host of things, and we talked about clinical issues and the evolution of one's career. Amany reminded me of some advice I gave her years ago, and as she was talking, I remember saying the words that came out of her mouth. It was actually touching to hear that she remembered what I said and reflects upon it. I suppose we all want to know that we have a purpose and what we say matters and helps others. So I appreciated her acknowledgement of my professional contributions. A life I no longer live, and in fact, it seems like another lifetime ago. Amany and I also spoke about how I was doing, and some of my fears around the first anniversary of Mattie's death. I am not sure what I should do on this day, and like I told my friend, Nancy, I am hesitant to do anything very public oriented. To me this day is a personal day, and I agree with Amany, it is about getting through the day. I do think anniversaries are hard, but frankly I think every day is hard, not just one particular day in general.

I do know internally that on this anniversary I need to do something related to nature. I am not sure what that means yet, but I do know that I want to visit Mattie's tree and add a gift to the tree. I have already contacted the Magic Man, aka Bob Weiman (Mattie's lower head of school) to alert him to my desire to attach something to the tree. Bob graciously said YES, so stay tuned as I work on these details.

The gardening ideas for the fall and winter keep coming in! My lifetime friend, Karen, sent me a link to winter plants last night. Frankly I had no idea that anything other than evergreen-like things grew in the winter! So I am being introduced to a whole new plant world. Though as Karen points out, gardening in the cold may not be up my alley.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Your parents are very special people. I had the privilege of meeting them during the course of Mattie's illness and I can say that talent, caring and love "run true" in your line from your parents right down to Mattie. It is no wonder that Lorraine, the waitress at the restaurant was so taken with your parents, it would be hard not to connect with them. It was especially nice of the staff to extend their special caring to you as well and provide a dessert that would appeal. I am glad that others have taken up the issue of the bulbs/gardening with you. I think that you will enjoy designing and planting a special garden to bloom in the spring. I know it will do your heart good when you see the garden in its glory after all your planning and work. One of the things I most enjoy is that it tends to invite the early butterflies and bees to arrive in great numbers, another reminder that life comes full circle. On this, a Tuesday, I send you my strength to help you get well and make use of your day. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "It does amaze me how much you get accomplished, in a day, especially when you aren't feeling well. I, too, am glad that Mom and Dad, along with Patches, are with you while Peter is on his trip. It was so good to connect with him yesterday (even if it was just email). I know that we will get to see each other during one of his trips to NJ. Maybe I can get him to our Roosevelt Island or you might come with him and spend the day with me. As you know, it is common for our sleep patterns to be erratic when in turmoil. It is just a few short weeks until the 1st anniversary of Mattie's death. You have so much on your plate and want it all to be done well, A DAUNTING TASK! My computer put the last sentence in caps, not me or maybe Mattie was just speaking to us both. Another thought regarding your not feeling well. Do you know Louise Hay's work? One book that I go to often is You Can Heal Your Life. Here she talks about positive and negative self talk and how it effects the body. I just looked up Colds. It signifies: Too much going on at once. Mental confusion, disorder. Small hurts ( and from me, Big Hurts). She redirects this with the following affirmation: I allow my mind to relax and be at peace. Clarity and harmony are within me and around me. I know that clarity and harmony are distant thoughts with Mattie gone. The grief you have will take forever to heal, yet, I hunch Mattie doesn't want his Mommy to suffer more than she is. He would not want you to be sick. He would want you to take good care of yourself as you did him, even though the results were devastating. You know what they say in AA: One Day At A Time! And then there are tears! I believe that colds keep us from letting our body naturally heal because we block up our passages, with the cold, so there is no place for the tears to get out."

FEAR AND SADNESS by Nancy Heller Moskowitz

When fear meets sadness, they often say:
I wonder which one of us will rule the day.
It's my turn, no, it's mine!
A battle that I do find,
Causes my mind to feel no rest.
For fear, wants me to be afraid,
That I shall forget you.
SOMETHING I WILL NEVER DO!
And sadness, says the hurt's too deep,
That I cannot bear,
The pain and loss of not having you.
Now anger shouts; DON'T FORGET ME!
I need to have my say.
I will keep the battle going, each and every day.
However, another waits patiently in the wings,
Joy.
Allowed to come and go sparingly.
Is there shame in seeking joy?
It doesn't change the meaning,
Of my life, my loss.
It wants me to remember,
To live each day with thought and care,
To share myself with those who dare,
To stand up and say, I MISS YOU!

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