Tonight's picture was taken in May of 2003. Mattie was a year old. I took him to a petting zoo that day, and what I love about this picture was Mattie's obvious fascinating with the ponies. Well it may not be obvious to you, but it was to me. The telltale sign of Mattie's fascinating was illustrated in his hands. His fingers were like antennas. If they were up and moving around, almost like seaweed in the ocean (swaying back and forth), then I knew Mattie was intrigued and engaged. In fact, if I let go of Mattie, he most likely would have jumped right in the pen with the ponies. I learned early on that Mattie was the kind of kid that did better in the fresh air, in open spaces without crowds, and amongst nature. I am not sure I had a great appreciation for being outdoors prior to having Mattie in my life. However, because I had a steep learning curve as Mattie's mom, to deal with his sensory issues, I quickly and almost scientifically studied what environments worked for him and what environments needed to be limited or avoided, until he was ready.
Quote of the day: If you should hear a song, out in the meadow loud and clear, have no fear - he is there. The melody heard is that of love, and those who listen hear it true. ~ Unknown
Sunday, December 12, is the 14th Worldwide Candle Lighting sponsored by Compassionate Friends (a self-help bereavement organization offers friendship, understanding, and hope to families following the death of a child). I realize with the holiday season upon us, asking you to stop and pause (and even light a candle) at 7pm on Sunday, may be an impossibility. But this moment of reflection would mean a great deal to Peter and I, as well as ALL the parents out there who have lost a child. I included some information about this Worldwide Candle Lighting below.
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Light a Candle For ALL children who have died
Excitement has been building as the fourteenth Worldwide Candle Lighting (December 12, 2010) approaches. The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor the memory of children in a way that transcends all ethnic, cultural, religious, and political boundaries.
Now believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightnings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.
http://www.compassionatefriends.org/News_Events/Worldwide_Candle_Lighting.aspx
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The event was two hours long, and the museum supplies you with precut pieces of gingerbread, royal icing, and candy. Your job is to put the pieces together and to decorate your house. We sat next to a family who has clearly been coming to this event for years. They arrived with bags of their own candy and a strategy of how to decorate their house. You would think two hours is a lot of time for such a project, but in all reality it takes time to think about how you want to design and decorate your house.
Tamra gave us these wonderful holiday aprons and for two hours we were engaged, covered in royal icing, and observing the different creations around us. The children in attendance were so energized in the room. I observed them buzzing around me and the tables trying to "steal" ideas to take back to use on their own houses. They used the word "steal," which was a riot. As if they were up to some top secret work, as they were checking out the different designs and layouts around them. They were very cute and I would say for the most part this activity captured the minds and hands of ALL ages!
Tamra then made a comment that stuck with me. As many of my readers know, I refer to Mattie as "Mattie Moon." A name he received in preschool. Tamra thought it was quite appropriate that our Moon should now be aligning with Mercury. Mattie is our Moon, and Brett is our Mercury. It seems too coincidental that these two bodies that exist in our solar system, should also play such a significant role in our lives. I never made the connection until Tamra spoke about it today.
This evening I spent time with Mary, Ann's mom. Ann and her children are visiting family today, so when I can, if I know Mary is going to be alone, I try to visit. I sat with Mary while she had her dinner tonight, and in the midst of that also helped Mary's roommate. Mary's roommate, though cognitively impaired, has become a friend of mine. I care about her well being, and I could see she was upset tonight. So I helped her with her dinner and with her bathroom routine. I am not sure how many people would take on such an endeavor, but frankly after living in a hospital for over a year, there is very little at this point that you can show me that will gross me out. Once I have gloves, I can do just about anything. Any case, I will spare you the details, but what I do want to share with you is that after helping this lady, she grabbed a hold of me, and gave me a big hug and a kiss. I was deeply touched by her expression of emotion and appreciation. Which brings me to the bottom line. Even people with severe cognitive impairments have feelings. When you treat them nicely, they CAN feel it, and they do know the difference.
I would like to end tonight's posting with a song entitled, One Last Christmas. I found this song on Keaton's website. As many of you know, Keaton was a young boy who lost his life to osteosarcoma about a month after Mattie. Keaton's mom writes on her son's site regularly, and tonight she posted this song. I must warn you, it is very touching and could be hard to watch. The song was written to tell the story of a little boy named, Dax, who lost his life to cancer. This boy died only after his whole community gave him one last Christmas in OCTOBER. I very much relate to this unity of community, and though Dax was not my son, I understand all too well the sentiments being conveyed in the song.
One Last Christmas
http://www.youtube.com/watch?v=Ye39mgcHC3E
1 comment:
I loved your creation.
We are doing OK. I took Jeremy to his first soccer practice of the year and the lady asked me how many children I had, so I told her about Emma and mentioned she had passed away from bone cancer. She quickly replied, Did your daughter have osteosarcoma? It turns out that her daughter had it too. She never had mets, has been NED for years and has a baby of her own, so she is doing well. This is the third person I have met in the normal course of my day who had a child with this disease.
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