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 30, 2008

Tuesday, December 30, 2008

Tuesday, December 30, 2008

Quote of the day:

"When your child is sick, you have tunnel vision." ~ Nick Cassavetes



There is something SO true about this quote. Peter and I live with this tunnel vision every day. We do have other obligations to fulfull in our lives and we do it, but the weight of Mattie's illness falls heavily upon us. It is amazing that Peter and I haven't become very ill ourselves from this superhuman stress. The irony is prior to Mattie's illness my area of research interest was caregivers. Particularly people caring for sick older family members. Not only do I know the caregiver literature inside and outside (thanks to my dissertation chair!) but I learned about caregiving and how to be a caregiver from the best caregivers out there, my mom and dad. My mom selflessly cared for my grandmother who suffered from a stroke for three straight years. The stroke left my grandmother very impaired physically (paralyzed) and psychologically, but my mom did not want to place my grandmother into a nursing home, so instead our home was transformed into a hospital and my mom became her nurse/caregiver. A major undertaking since my grandmother was very heavy to lift and she became a profoundly different person than the woman we knew and loved prior to the stroke. Seeing my mom work so hard as a caregiver day in and day out inspired me while I was in college. So much so, that by the time I got to graduate school, I knew what I wanted to research. Caregivers, and the impact such stress places on their bodies and minds. The ironic part is I always thought this first hand knowledge was imperative to the work I do in the field, but I never in my right mind thought I was going to have my own caregiving experience this young in my lifetime. For my family, seeing my grandmother so altered day by day was heartbreaking enough. But I am learning, you can't control what life throws at you, only how you deal with it.

There is a lot of caregiving research that was done in the 1990's that clearly illustrated that the immunity and health defenses of caregivers can be severely impaired because of the work they do each and every day. I saw this finding come to life when my own mother became hospitalized and gravely ill from her caregiving role. I know this is something she is trying to prevent from happening to me. As I am sick now and going on day three of bedrest, I can see that a simple bug that would usually wipe me out for a day or so prior to Mattie's illness is taking much longer for me to deal with. I am not a wallow in pitty sort of person, in fact, if you bumped into many of my students, they would tell you I have taught many a night while coughing and even with fevers. You think you are invincible sometimes, or that other things are so much more important than your health. Well how absolutely ridiculous is that? But what a way to learn such a powerful lesson. None of us are invincible, none of us are that important that we can't take a sick day, and I could go on, but you get the picture.

With me being ill, Mattie and is also having a slower day, because Peter needs to be around to take care of both of us. This morning Kathie, Mattie's occupational therapist, and really a family friend now, came over and worked with Mattie for over an hour. Mattie took to Kathie like a duck to water, there was no attitude, and he did not give her a hard time. Kathie came over with some therapeutic presents for Mattie. He continues to use his hands today to stack the jenga wooden blocks, and I can't wait to see what he does with the rubber pig! Thanks Kathie for the work you are doing with Mattie, and thank you for giving Peter the time to go out to the pharmacy for medications for me.

We want to thank Liza today from bringing over homemade chicken soup, homemade pumpkin bread, and pineapple for us today. The chicken soup was a real treat. Liza was our point person this afternoon, and despite having other obligations in the afternoon, she found the time to come and help us. It was greatly appreciated! Liza also dropped off a huge surprise to us. A framed photo of Mattie with the SSSAS football team. I took this photo back in the fall, but I have never seen it enlarged or signed by every player. We took a photo of this impressive poster sized photo, front and back. Thank you for this special treat. As all our readers know by now, I am extremely fond of the coaches of the team, and I can't thank Coach Dave enough for all his love and support for our family. Though I do not know the players themselves, I will always be impressed with how kind and gentle they were with Mattie when they met him several months back. This photo will be finding a special place in Mattie's room.

















We want to thank the Giammittorio Family for a wonderful dinner. Dawnee you out did yourself. Mattie even ate carrots, mushrooms, and potatoes tonight. It was amazing. Everything was delicious, and I forgot how much we love baked potatoes. Thank you for that tonight, not to mention the cheesecake. Mattie hasn't opened up his gift yet, but I peeked in and I know the helicopter will be a hit with him. Your dinner motivated me to get out of bed, and I joined the boys downstairs and we all ate together. Then Mattie introduced me to a discovery channel show where you track tornadoes, which he finds fascinating! So we all watched it together.
The excitement for the evening was Mattie finally agreed to take a bath. Now that may not sound like such a big deal, but it truly is! Mattie has refused to go into the bathtub since his first surgery back on October 20. I was so thrilled that Peter convinced him it was safe to take a bath. Mattie was a mess, and there is so much a sponge bath can remove, especially after surgery when your body is covered in an iodine colored solution. The bath went fairly well tonight and after which Mattie sat still for a dressing change. So it was a full night for all of us. Though I am getting used to it, it is still somewhat disconcerting to see these HUGE scars on Mattie's arms and leg. I know they will get lighter in time, and I know in the grand scheme of things I shouldn't even be concerned by them, but we live in a world where we are first judged by what we look like physically. As a parent with such a sick child, you wonder how will the world receive and treat Mattie. Yes I realize I am putting the cart before the horse, but as a parent your mind can't help but go there at times. I also see Mattie struggling to walk, with his knee turned in and his foot seeming to go in the opposite direction of the knee. It is an awkward position and I try to correct it when I see it.
Mattie has a special playdate that he is headed to tomorrow (wednesday). Stay tuned for the update tomorrow, but I know he is motivated to go, and I am trying to get myself well enough to attend with him. If I can't Peter will definitely go with Mattie. But at the moment, Mattie is holding his own. He looks good, is now clean, and is ready for a change of pace tomorrow.

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