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

January 29, 2023

Sunday, January 29, 2023

Sunday, January 29, 2023

Tonight's picture was taken in February of 2004. Mattie was almost two years old. That weekend we took Mattie to the Natural History Museum in Washington, DC. The Museum had this wonderful room with interactive displays on the floor. Peter was showing Mattie each of the screens and Mattie had no idea what to make out of it. He clearly was intrigued and was absorbing everything around him. Peter and I worked hard at trying to stimulate and engage Mattie's mind, and fortunately we did not wait for the right time to do things. Because in our case we had to pack a lifetime into seven short years. 


Quote of the day: Hard times don't create heroes. It is during the hard times when the hero within us is revealed. ~ Bob Riley


I somehow hit one of my ribs yesterday while helping my dad out of the booth he was sitting in at the restaurant. I made note of it while it happened, but today the pain is a throbbing and a non-stop ache. Lovely on top of everything else. 

As is typical, after breakfast, I worked with my dad on his daily journal. We started this book in July of 2022, when he was working with a speech therapist at the hospital. Each day, he fills out the same sort of log. 

As you can see, the log is very specific and provides him guidance on what I am looking for him to record and reflect upon. This morning, he recorded his total walk count for Saturday. It was over 2,000. 

I had my dad go back to Saturday's log, and my question was.... what did you do to get such a high walk count? He looked at the log and then started reading me everything written on the paper!! I stopped him and told him to talk about only the activities that involved walking. A simple question leads to absolute confusion. 

Therefore, I modeled for him how he should answer the question. I referred to the logbook and said... 'you walked 15 minutes in the morning. Then you went to a restaurant. There you had to get out of the car and walk inside, then walk to the table, then later walk to the restroom, and then finally back to the car. All of the restaurant activities add to your step count.' I repeated this multiple times. 

My dad will say he gets it, but then if I ask the same question again, he has NO IDEA how to answer how he got a walk count of over 2,000 steps yesterday. Again, I try to go over the steps with him, but he expects these logical steps which we take for granted (get out of parked car, walk inside restaurant, walk to table, to restroom, and back to car) to be written in his log book. If it isn't written down, he can't seem to think about these steps for himself. It is this form of thinking that cognitive assessments do not seem to assess. But this thinking is what helps us live independently. 

I admit that after trying to get my dad to answer this question for 15 minutes, I got frustrated. My dad is naturally lazy and would prefer NOT to think and use his brain. I do support him but I also push him, and remind him if he doesn't work on these things, his brain will not function at all. I know my dad's therapists felt he should be pushed more and have more responsibilities. So when I have a moment of guilt about my behavior, I am reminded about what his therapists have said. 

By 11:30am, this was the state of affairs in my house. If I don't push my dad and create a daily schedule for him, this is how he would spend his entire day. 
I got my mom on the treadmill this morning for ten minutes (as this is part of her physical therapy exercise program). I think I wore her out!
Peter maybe in Boston, but wherever he is, a cat is typically by his side. This is Inky! She is a rescue and I hear that she is a real love. 


No comments: