Birthdays and Christmas

My birthday is coming up in early November. Getting older has never bothered me as I always believed that with age comes wisdom. Since the diagnosis, birthdays are a reminder of another year closer to the end. Tougher. Not something to celebrate any longer.

But Christmas’ have become dearer to me. I love everything about Christmas and try to drink in every moment with the entire family; the music, smell of winter, Christmas lights, the tree, the spirit of the season that creeps into my soul about the first of December. I love the house full of family on Christmas morning. I take snap shots in my mind all day long. Some years, especially the first few after the diagnosis, I often fought back tears all day. Tears for the Christmas’ I would miss.

And I always wonder if this will be my last Christmas.

My disease is not one with a slow decline but it is one of flares and crashes. Fine today, dead next week. In the beginning, I was finding that a bit difficult to deal with. A wonderful man in rehab named Roy had IPF – also a Restrictive Lung Disease. In 2005, I asked him how he dealt with death hovering at all times. He said that he doesn’t think about it. If it happens, it happens. No sense worrying about it. He told me to take care, wash my hands and live the rest of my life well. He died two months ago at 85-years old. I miss him. He was a classy, intelligent, and a very kind man. I learned so much from him.

Our son is very aware of my doctor appointments and lawsuit processes and will phone to find out how it is all going. He is an adult who lives 800 miles away and is running his own busy life. But, I don’t think he really understand how important some things are to me since I have been sick. Like Christmas. It is a marker of time. Proof that I fought to live one more year and hoping to be able to see the next one.

He didn’t come home for Christmas two years ago. It was an extremely sad one for me. I never told him. I wonder if he really comprehends that I am dying but just doesn’t want to deal with it or does he not really understand?

Hmmm. I really need to work on this. I would love to know how other adult children talk with a parent with a bad diagnosis. Do they avoid the ill person? Begin to separate? Do they not want to talk about it? Do they want to talk about it but are afraid to do so? Any advice would be appreciated.

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