Mattie Miracle Walk 2023 was a $131,249 success!

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 28, 2020

Friday, August 28, 2020

Friday, August 28, 2020

Tonight's picture was taken on August 8, 2009. Meet "Speedy Red." The name Mattie gave to his ride-on vehicle. Peter assembled this car and Mattie couldn't wait to try it out. Doesn't he look happy and proud! At that point I did not know if Mattie understood the mechanics of driving, so I squeezed into the passenger seat to make sure Mattie would be safe. However, Mattie took to driving like a duck to water. Our "little engineer," instinctively understood the difference between the gas pedal and brake, and he was a natural at steering. 


Quote of the day: Today's coronavirus update from Johns Hopkins

  • Number of people diagnosed with the virus: 5,913,527
  • Number of people who died from the virus: 181,762

Just when I think I will have a slower day, forget it. From the moment I get up at 6:15am, until I go to bed, I am working on something. Every morning after breakfast, I do thirty to forty minutes of cognitive exercises with my dad. He hates it and finds it very taxing. That doesn't stop me from doing them however. Since Wednesday, my dad has been reporting intense exhaustion. One of his caregivers pointed this out to me and she did not feel comfortable exercising with him, if he felt this way. So literally we gave him a "holiday" from his in-home exercises on Wednesday. We also lightened up his routine on Thursday and Friday. Nonetheless he is still exhausted. 

So today, I discussed this with my dad's occupational therapist. I personally feel the LESS you do the more tired you feel. Having an exercise routine, actually perks one up, and I noticed after exercising my dad seems more alert. The occupational therapist agreed with me. Therefore we have to find a happy medium. My dad still has to exercise every day, but perhaps not do as many repetitions of each exercise. 

I think we now have irritable bowel syndrome issues under control. It is a fine balance to prevent both constipation and diarrhea. It has taken me a month to figure out his diet and how much fiber he needs daily. But wow, what a month of experimentation it has been. 

Today was laundering of bed linens! That alone is a task of grand proportion, when you consider my dad uses 16 pillows. You read that correctly! When my dad's occupational therapist came to visit it for the first time in July, he looked at my parent's bed and said, my dad is like "princess and the pea." So true! 

On top of that, we had a call with a new attorney today, to update wills and power of attorney. As my biggest fear is that my mom gets sick and my dad serves as her power of attorney. I feel like the law firm we chose specializes in elder law and understood that the intention for the changes is to find ways to best support my parents, their wishes, and their estate. 

What I am not describing however is the day to day angst and agitation that my dad experiences. To an outsider, it can appear that my dad is super self focused and selfish. As he wants his needs and demands fulfilled immediately. It takes great patience and understanding to know that this is his disease and he is no longer able to tell time and have insight into his behavior. 

No comments: