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

December 7, 2017

Thursday, December 7, 2017

Thursday, December 7, 2017

Tonight's picture was taken in December of 2008. Mattie was sent home for Christmas. I suppose the thinking was that children wanted to be home for the holidays rather than in the hospital. Unfortunately the holidays for us were beyond miserable. Mattie was in terrible pain, exhibiting PTSD symptoms, and was truly depressed. Our days at home did not look like photo, but given that friends had dropped off these holiday items (reindeer antlers, a red Rudolph nose, etc) for Mattie, Peter decided to dress up and try to liven the spirit in our home. It worked but only for a few minutes.... long enough to take this photo. 



Quote of the day: Selfishness must always be forgiven you know, because there is no hope of a cure. ~ Jane Austen


I am in week two of dealing with an enormous cluster headache. This makes doing any activity MUCH harder. In addition to the work that we do for the Foundation, which is a full time job, Peter and I have been doing intense caregiving for our older neighbor for the last three weeks. Our neighbor fell and needed surgery on her arm and leg. Both of which are immobilized, making it impossible to do even the most basic of activities. She can't cook, cut food, lift anything, do her laundry, leave her home without supervision, and the list goes on. However, these last three weeks have been an eye opener, because our neighbor lacks the support of family or close friends. 

One should be asking.... how was she discharged from a hospital? It is a good question, because I would hope despite a patient insisting on wanting to go home, that a hospital would have some responsibility to ensure that proper care can be provided at home. Taking a patient's word for it, SHOULD NOT count. If Peter and I did not step in over the last three weeks, I am quite certain this situation would have gone dire ASAP. As it is, it is still hanging on by a thread. 

What I am physically aware of however, is that between round the clock Foundation work and caregiving, this is a very bad combination. What does caregiving for her entail..... laundry twice a week, grocery shopping twice a week, ALL dinner preparation, clean up of dishes, changing of her bed linens, washing her hair, picking up her mail, getting her prescriptions, throwing out her trash, etc. It is a significant responsibility and effort on our part, of which we are doing it all without compensation for our time or the items we are purchasing. When I wonder why I am tired at the end of the day, I don't have to think about it for long. 

But then I reflect on our care community when Mattie was ill. Some of the people who helped we did not even know, yet this group of people were totally committed for over 14 months. Given what I am experiencing now with my neighbor, it makes me pause and reflect on how deeply grateful I am and that I am in awe of the community that Mattie built. Not that I wasn't aware of this before now, I always was and will always be grateful to Team Mattie, but now I have an even greater appreciation for just how stellar our friends are. 

1 comment:

Margy Jost said...

Vicki, a special post drawing a parallel to the Team Mattie Community helpers & your current care of Your neighbor. It is eye opening how much time goes into caregiving when one is totally invested. I have the feeling Mattie's Team of helpers was larger than 2 people doing it all!

Overall care of people who injure themselves is inadequate if the hospital/clinic released her to home without knowledge of adequate care at home. When we are hurt or I'll, it does take a village to accomplish all that needs to be done for someone. Whoever & wherever decided it was ok for this person to come home made an enormous error in basically discharging a helpless person