MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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

June 28, 2020

Sunday, June 28, 2020

Sunday, June 28, 2020

Tonight's picture was taken in August of 2007. We were staying at a hotel in San Diego and I am quite sure I snapped this photo because this was a rare sight! Mattie was in his pajamas and sitting still. It took a lot to wear Mattie out, and my joke was he had two modes.... on and off. Nothing in between. 









Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,548,143
  • number of people who died from the virus: 125,793

It was another day in paradise. I am being facetious, if you can't tell. The caregiver assigned to work with my dad yesterday returned today. Yesterday, she seemed refreshing and today she was grating, bordering on inappropriate. Why? Besides the fact that she thinks she knows better and wants to correct us on how we do things in our own home, she is non-stop chatter. Chatter that focuses on herself. You know the kind of talk that can give you an overwhelming headache? This is her. I could potentially put up with all of that, but then she is working hard to recruit us away from the caregiving agency we signed a contract with in order to work with her independently. Naturally, she would get more money if we paid her privately. But there are many problems with her suggestion! First of which is we signed a caregiving agency contract and hiring a caregiver privately who we found through the agency, would result in a $25,000 fine. Putting the fine aside, it makes no sense to put all your eggs in one basket. As people get sick, things happen, and what would happen to the continuity of care for my dad if we worked with ONE caregiver privately?

Of course my main objective is she is SO BUSY promoting herself, that she isn't diligently doing her job. She started laundry for my dad. But never put it in the dryer and folded it. What good is it if you just throw it into the washer and leave it there? The consequence is MORE WORK for my mom. I told her it was important to through out the garbage, she did not do that either, and I landed up adding that task to my already full day. Needless to say, I wasn't happy with her today and this translates directly to the caregiving agency. I tried to reach out to them today, with no avail. They were great at responding to all my messages before we signed a contract. They are not as attentive now! 

Meanwhile, a new caregiver shows up at our door at 8am tomorrow. There is NO cross training! So guess who has to start from ground zero? Correct, that is us! Frankly, I am not sure what is worse.... doing all the work yourself or having strangers come into your home and have to endure all those complexities? Prior to seeing long term care insurance (LTC) in motion, I was a big LTC fan. Now I feel like there are ways adults can save for their aging needs without the impersonal regulation of an insurance company. I don't do well with big brother standing over my shoulder telling me who and how long I can hire someone to help me. Any time government or businesses get involved in regulating our health care, problems arise. 

Any case, tonight I can say we are chronically tired, frustrated and stressed out. We would love my dad to bounce back to the way he was prior to hospitalization, but unfortunately this isn't the case. How we long for the days when he was more independent and more like himself. It is very hard seeing this transformation as my dad is pervasively tired, at times confused and disoriented, and has difficulty with every day activities. Aging is not for the meek. Case in point, the caregiver today was having a side bar conversation with Peter, while my mom was standing in the room. As if she did not exist or couldn't make decisions. Both of which are false. Naturally my mom found this offensive and it leaves me wondering why our society makes such false assumptions about older adults. 

Tired, disillusioned, and no end of work in sight. Leaves you feeling rather depressed about every aspect of life. 

No comments: