Tonight's picture was taken in October of 2006. Mattie was four and a half years old and doing what we loved doing in the fall..... attending fall festivals. This particular festival had an incredible display of pumpkins. I loved the big one behind us and I suggested to Mattie that we should take a photo by it. Peter snapped it and it happens to be one of my favorite photos. Mainly because Mattie was giving us a naturally big smile and truly was loving the moment.
Quote of the day: Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built of a pair of shoes made. Or a garden planted. Something your hand touches some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there. ~ Ray Bradbury
There were two highlights to my day today. The first was talking to a couple who also lost an only child to osteosarcoma. They are based out to Boston and they were connected to us by one of the authors of our Psychosocial Standards of Care. I admire this couple, as they are focused on supporting families through the cancer process and are planning to do this in an unique way with the Foundation they are working on establishing in their son's memory. There are many noteworthy thoughts that came into my mind when chatting with this couple, but the first was something they said mid-call. They were discussing with us the fact that not everyone deals with child loss in the same way, and while we all are set on running a foundation to help others, not every bereaved person/family can or wants to do this. This couple is only one year into their grieving process and yet this comment is very astute, because they are right. Running a foundation and reliving our issues are NOT for everyone. Of course there is no right or wrong answer to dealing with child loss, but like this couple, Peter and I had to create and run Mattie's Foundation, because it is like our compass and lifeboat in our terrible life-long storm.
The second highlight is later in the day, I suggested to Peter that we take Sunny for a walk. Sunny loved it and while outside and not caring for anyone, I can vent, walk, get fresh air, and take in the greenery. Because it was a lovely evening, we bumped into neighbors and had several nice chats. I can't do this with my parents. In fact, I can't have any sort of social life with them because at the end of the day the only way I can describe caregiving for aging parents it is a lot like caring for a toddler. The world is very "me" focused. No matter what the conversation, the topic in question always comes back to them. It is impossible to have a two way chat or meaningful dialogue. So in essence my parents are NO longer my parents and I am not sure I really blame age as much as I blame dementia.
This morning was a riot. I told my mom I had two conference calls back to back. After which I would take her to CVS and then out for tea. Don't you know that this did not register with her. At 10:45am, my mom approached me and said she was ready to go out! I then had to explain to her again that I couldn't go out now because I had calls. Once my calls were over, I did take her out. Taking my mom shopping is challenging at best. She gets disoriented easily and freezes and she also has trouble balancing and walking. So trying to manage her and a shopping cart is a comedy show. I can't tell you how many strangers have offered to help me along the way because any rational person can see I am on overload. Once shopping was over, I took my mom for tea and snacks. She loved it and chatted and reminisced for two hours straight. Very one way chatting. I remember when I was in graduate school, hearing about the importance of reminiscent therapy with older adults. I do think it is a lot easier to do this from a professional standpoint, and not from the lens of a caregiver who is with the person 24/7. The sad part is I tried to tell my mom about one of my calls today, and she changed the subject back to her. So in many ways, my life is very isolating and physically and emotionally demanding.
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