Tonight's picture was taken in January of 2008. This was literally seven months before Mattie was diagnosed with cancer. Who would have ever known from this photo that anything was wrong with Mattie, doesn't he look like the picture of health? That weekend we took Mattie for a walk, as he loved outdoor time and nature walks. As you can see he found a stick along his journey. Mattie had an extensive stick collection in our commons area. With each walk, Mattie usually found something from nature that he wanted to take home as a reminder of his adventures. Where Mattie would pile these sticks near our home is now our Mattie memorial garden.
Quote of the day: Work is love made visible. ~ Kahlil Gibran
There is a great deal of truth in tonight's quote. When I wonder why I work around the clock, it isn't because I love to work! It is what the work symbolizes and is about. My work for the Foundation is a labor of love, and a tribute to my connection, love, and memory of Mattie. So indeed Gibran is correct, work is love! However, I have to say I am ready for the Roundtable to be over. The planning is an absolute killer, but I do not like Foundation events to look poorly, because I feel they are a reflection of Mattie. So I spend a lot of time working through details.
I took Sunny out for a walk today and I was thrilled to get back inside. I just felt a combination of desolation (because of street closures, blockades, etc) and also uneasiness in the city. There is a ton of security and also a fair amount of protesters that make me uncomfortable in my own neighborhood. So in essence we are in a lock down status at home until Sunday.
It is hard to imagine that 23 years ago today my maternal grandmother died. In a way it doesn't seem that long ago. She was a special lady and we had a very close relationship, as I also called her "mom." My grandmother lived with my parents ever since I was born, so I never knew anything but an inter-generational family. I learned a lot from my grandmother and it is a shame she never met Mattie.
My grandmother suffered a massive stroke when I was in graduate school. She was left paralyzed on one side, unable to swallow, to read, to concentrate, and had an altered personality. She lived with this condition for three years and my mom was her primary caregiver, first at home and then in a facility. The only reason my mom moved my grandmother into a facility, was because she became deathly ill from caregiving after one intense year of support. I recall speaking to an ICU nurse caring for me, who told me my mom had pneumonia which turned into sepsis and she was dying. Frightening news to receive when across the Country. Thankfully my mom was treated aggressively and did recover but her recovery took over a year. In any case, my grandmother's illness was so devastating for our family that when I entered my counseling doctoral program I decided my area of research interest would be caregivers of older adult family members. Who knew years later that I would have another experience with caregiving..... caring for Mattie battling cancer. Though caring for an older adult is different than a child with cancer, there are enormous similarities and I would say the impact on one's physical and emotional health have great overlaps.
1 comment:
Vicki, When I miss a night of reading a blog, I always read from the latest one to the rest. Tonight it was just two, tonight's and yesterday.
Little did I know that last night, you mentioned and used a quote to reference that all your work is a labor of love for Mattie.
I looked at the picture of Mattie from last night with his giant Scooby Doo & then at the picture of Mattie, months before his diagnosis. In the picture with Peter, there is no sign that anything was going on in Mattie's body that would lead to his horrific diagnosis. Cancer is sneaky in such a deceptive way. Through the years of working, I would say good bye, see you tomorrow, to a child in treatment, that yes was very sick but in no way did I think I would never see them again. Yet on several occasions, a Dr. would be waiting until I came that next morning, take me into an office to tell me, the child had died in the night. It was always a shock . With each death, I made a promise to myself that I would work harder to make a difference for the kids still in treatment & to honor the memory of the child who had just died.
Mattie Miracle will do great things for other children in treatment for Cancer to honor forever, Mattie's memory!
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