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

February 19, 2021

Friday, February 19, 2021

Friday, February 19, 2021

Tonight's picture was taken in February of 2009. Pictured with me and Mattie was Jenny, one of Mattie's art therapists. That day we were headed to the outpatient clinic. To do that we had to go down a ramp. Mattie literally wanted us to push him down the ramp and let go. Makes sense since Mattie LOVED roller coasters. To make him happy we ran down the ramp holding the wheelchair! In the background you can see a healthcare professional watching the fun!


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

  • Number of people diagnosed with the virus: 27,950,547
  • Number of people who died from the virus: 495,015


Did you know that today is National Caregivers Day? National Caregiver’s Day started in 2015 by the Provider’s Association for Home Health and Hospice Agencies to recognize professional caregivers, but in the years since, it has expanded to include all those who provide care for others.


Caregiving applies and impacts all of us at some point in our lives! I recall when I wrote my dissertation on family caregivers, I began the introduction of my Chapter 1 with Rosalynn Carter's quote:

"There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." 

TO ALL THE CAREGIVERS OUT THERE, OUR SOCIETY THANKS YOU!  CAREGIVERS ARE SPECIAL, SELF-LESS PEOPLE, WHO DEVOTE THEIR TIME, RESOURCES, ENERGY, and LOVE TO CARING FOR FAMILY MEMBERS AND FRIENDS!


Here are some caregiving facts:

  1. More than 1 in 5 Americans (21.3%) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. 
  2. It is estimated that there are 53 million family caregivers in the United States, up from the estimated 43.5 million in 2015.
  3. Most caregivers of adults care for a relative (89%), typically a parent or parent-in-law (50%), spouse or partner (12%), grandparent or grandparent-in-law (8%), or adult child (6%), though 10% provide care to a friend or neighbor.
  4. Many caregivers live together with their recipient (40%), a proportion that has grown since 2015 (34%). 
  5. As in 2015, older caregivers tend to take care of similar-aged recipients, with 74% of caregivers ages 75 and older caring for a recipient age 75 or older.
  6. Compared to 2015, caregivers are more likely to report their loved one needs care because of long-term physical conditions (63% up from 59% in 2015), emotional or mental health issues (27%, up from 21%), and memory problems (32%, up from 26%), including Alzheimer’s or dementia (26%, up from 22% in 2015).
  7. The support and complex care tasks the nation’s caregivers provide are largely unchanged since 2015, with today’s caregivers providing about 24 hours of care each week. Nearly all caregivers help with Instrumental Activities of Daily Living (bill paying, housekeeping, grocery shopping; 99%), 6 in 10 help with Activities of Daily Living (dressing, bathing, feeding, toileting; 60%), and nearly 6 in 10 help with medical/nursing tasks (58%).
  8. While many caregivers feel their role has given them a sense of purpose or meaning (51%), these positive emotions often coexist with feelings of stress or strain. Caregivers report physical, emotional, and financial strain, with 2 in 10 reporting they feel alone (21%).
  9. One in 4 caregiver find it difficult to take care of their own health (23%) and a similar proportion report caregiving has made their own health worse (23%).
  10. One in 5 caregivers report high financial strain as a result of caregiving (18%). Four in 10 have experienced at least one financial impact as a result of their caregiving (45%).
To read a full report on caregiving in the US by the National Alliance for Caregiving, go to: https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf

I remember when I was conducting my dissertation, I did a mixed methodology design. As my dissertation chair believed it was crucial to collect direct information from a portion of my sample of 100 caregivers. I literally did hour long interviews with several caregivers. When I was doing this, I had just given birth to Mattie. So I was sleep deprived and stressed out. Nonetheless, despite how I was feeling, I was touched by each caregiver I interviewed. Their stories were haunting and frankly after each interview all I could say to myself is WOW! How are these individuals managing day to day? It just seemed like they were facing the impossible. Yet when you talk to caregivers they don't discuss the burden. Most will say they aren't burdened at all. In fact, discussing care as a burden produces more stress, guilt, and in some cases anger. Nonetheless, what family caregivers do each and every day does take its toll and it does have long-term medical and mental health ramifications.

Then I parented Mattie with cancer, and it gave me further insight into what the  caregivers said to me in those interviews many years before! Keep in mind that I am not a caregiving novice, as my maternal grandmother suffered a stroke when I was in college. This transformed our home and my mom's life, as she became my grandmother's primary caregiver. When my mom got sick from caregiving and landed up in the hospital, then she needed support. So I have seen the ramifications of caregiving, but somehow caring for a child with cancer added another layer to the mix. Mattie's journey gave me an even greater understanding for the tasks of caregiving and the constant uncertainty and perhaps hopelessness one can develop in the process. 

But at the end of the day, for the majority of caregivers, we take on the role because we love the person who needs help. We feel it is our responsibility and we also believe that no one is going to do a better job than us! Not to mention that the health care system and the health care insurance industry are NOT set up to meet the needs of those who need day to day care. Specialized professional care yes, custodial... day to day care, forget it! Which is why family caregivers step in because if we don't there are really no good alternatives.  

No comments: