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 8, 2011

Thursday, December 8, 2011

Thursday, December 8, 2011

Tonight's picture was taken in July of 2008. About two days after Mattie was diagnosed with cancer. I recall how it felt those initial days, and perhaps I felt the need to post this picture tonight, because how I felt back then is how I am feeling today. Back then I experienced clinical anxiety for the first time. I was so agitated, I couldn't sleep, eat, or really concentrate on anything. There were times I thought my heart was going to jump right out of my body! The challenging part back then however, was not to worry Mattie with my feelings and emotions. So though I felt all these things, I plugged along and did not address my own issues, because Mattie's were our priority. Also I am sure some of you are asking why there were Christmas lights behind us when it was July? That is because Mattie wanted to decorate our deck for Christmas. I am not sure why, but he wanted to see lights and frankly it was a great idea since we all needed a distraction. So we set up some of our lights and Peter snapped a picture of us. July 2008 is a time that will always be etched in my mind.


Quote of the day: Your Compass ~ Robert Longley
The stations of the the compass
We know them all by name
Each of them is different
But also much the same
Together there's direction
Or four as the case may be
Where will each one journey
I guess we'll wait and see
North is cool and focused
South is warm and bright
East welcomes the morning
And West does chase the night
Possibilities are endless
The journey now does start
The compass that you carry
Is the one within your heart


It is interesting that the quote/poem I posted tonight relates to listening to your heart, because your heart is your true compass in life. It is an interesting notion. For the past two weeks, though I haven't written about this, I haven't been feeling well. Initially I attributed my feelings to stress or nervousness. But as the symptoms persisted and became more pronounced throughout this past week, I decided to see my doctor today. I felt as if my heart was aching, and so finally I had to listen to my heart and do something about it.

Naturally I am two years out from Mattie's cancer battle, but like I indicated in tonight's picture description, I continue with my own battle. Many of my issues associated with grief do come out for me in physical symptoms, most likely because I channel a great deal of emotion inside. After a while, that emotion has to go somewhere. In addition, I honestly believe that living under INTENSE stress and anxiety while Mattie battled cancer has wrecked havoc on my life. What a normal individual would look at as a nuance, my brain and body interprets that same nuance in a much more dramatic way. It is as if a hyper alert button has been stitched on in my body from 2008 and I no longer react in a typical format.

Like in July of 2008, I have been dealing with sleepless nights, heaviness in my chest, and sometimes shortness of breath. I have been balancing many different things lately and with Christmas coming, I assumed I was just feeling anxious. I also assumed that once some of the pressures lightened up, so would these feelings. But they haven't, they have gotten worse. Since I am scheduled to go out of town next weekend, I felt as if I couldn't do this without seeing the doctor and determining there wasn't a medical issue associated with these symptoms.

This morning I got up early so I could be the first one calling into the doctor's office for an appointment. After advocating for Mattie, I learned all the tricks about phone systems and getting access to an actual doctor. When I called the office this morning, the gatekeeper (or receptionist) told me there was no way I could see my doctor today because she was booked solid. She then made me an appointment with the nurse practitioner. I naturally love nurses, but to me this issue required the attention of a doctor and also someone who understands my recent history. So I told the receptionist that my doctor told me that if I should ever want to see her, that I should come in at lunch time. The receptionist said NO to that. With each "no" I received, I became more persistent. I told the receptionist I wanted her to send an electronic message to my doctor. She actually typed in the message while I was on the phone with her. Needless to say, within 30 minutes my doctor called back and made time to see me this afternoon. One of the many things I learned while caring for Mattie is that doctors need gatekeepers. They need gatekeepers because if left unchecked they would most likely self destruct. So many doctors really do want to help and they want to interact with their patients. But naturally due to time constraints and insurance and billing issues, this isn't possible. I have found that if you can get access to a doctor's ear and plead your case, most doctors won't turn you down for an appointment. It is a matter of working through and passed the gatekeeper to get access to the physician.

I can safely say that I made the right decision to advocate to see my physician today. Because the beauty of her is she knows my health history. It is by knowing my history she is able to make a solid diagnosis. One the of reasons I love my internist is she is thorough, listens well, and takes an aggressive stance on issues presented to her. A part of me wondered whether all my symptoms were in my head and that I had a full blown case of clinical anxiety. However, as a clinician, I knew my symptoms made no sense. I had the feelings constantly, they weren't short lived throughout the day or triggered by anything in particular. I learned today that my assessment was correct, I instead have restrictive airway disease, or in other words asthma. By not being fully able to breathe, this was taxing my body and made me feel as if my heart was racing. In essence my body was developing an anxiety response to the lack of oxygen. She ran several tests on me, all of which I was familiar with from Mattie's battle...... breathing tests, EKGs, and nebulizer treatments. It was from the in-office nebulizer treatment that I finally could feel the tightness and constriction in my chest dissipate. So hopefully this will be the start to me feeling better soon.  

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