I had this online chat on the wonderful site Caregiving.com which led me continue my reflections on holiday preparations yesterday:
I sent this video chat to another caregiver friend to begin a personal conversation about how we prepare for the holidays. My friend is the mother of two adult children with severe disabilities. Sadly, one of her boys passed away a few years ago and she misses him still. Her surviving son requires 24/7 nursing care, so holidays are very different for her family than they are for most.
Here's what she said:
In the old days, every single room in our home was decorated to the maximum. It looked like the Christmas Store exploded in our house. I made numerous fresh floral arrangements (as I was into that for a few years as therapy). I baked. I made candles, pouring wax into assorted forms and decorating them when finished to give as gifts. I hosted parties for our close friends for gift exchange, and made huge meals for the occasion. All of this, I did as a single parent. In our graduate student days, when we were poor, I baked pecan pies, and drove in the freezing snow on icy roads to deliver them in person to our friends. My pies were famous, so I was usually greeted at the door with fork-wielding friends!
My Uncle and Aunt had the largest home, so my Aunt insisted that she hold both Thanksgiving and Christmas. That meant that I got to haul my boys and their chairs, their meds, diapers, changes of clothes, books, toys, and whatever else, along with my pot luck contribution of veggies, and at Christmas ~ all of our Christmas gifts to the family. Then I drove an hour to their house ~ Load, unload, load, unload, arrive home after midnight, put the kids to bed and collapse.
When I insisted that I wanted to host Christmas, my Aunt said, "We're just trying to make it easier for you." I explained that it was far easier for me to cook dinner in my home than it was to haul everything down to their home and back again.
So what happened on Christmas Eve night the first time I hosted? One son had pneumonia, and at 3 a.m., he, my other son, and I were driving to ER in the fog. Got home at 6 a.m. Put the turkey in. Got the boys settled, tended to them, and when the family arrived on Christmas afternoon, I was ready. I pulled it off.
Not anymore. Now, I decorate a bit, with maybe a touch here or there in the living/dining room/kitchen. I don't have the strength or energy to decorate ~ unbox, put out, take down, rebox, put away. It's a lot of work. The Christmas decorations are on the top shelf in the garage, a precarious reach on the ladder for my husband. A broken hip isn't worth the festive ambiance!
Just the little decorating we do for the boys is tiring enough for us. As long as we honor them and bring beauty and sparkling, meaningful surroundings to them, we have celebrated Christmas exactly as we should.
We are just so grateful to spend Christmas at home, as we've spent a few in the hospital; Christmas 2004/New Year 2005. In 2010, our young man was released on Christmas Eve from ICU, but he was not ready to be home, and was sick that weekend, while we waited for a nurse. He was back in ICU by January 24 2011 for 40 days (we watched the Super Bowl in ICU).
Choose any holiday, and we've been in the hospital with one of our boys. Easter, Valentine's Day, Fourth of July, all of them ... When that happens, I bring the holiday to them. I wear Christmas sweaters, or I bring in a stuffed bunny from the gift shop, or balloons, or some appropriate decoration for that holiday.
As you said in the podcast, we're different. Even after 45 years, my remaining family members don't quite grasp how different we are. That's because I spent so many years trying to be Super Woman, attempting to make everything as normal as I possibly could.
And, as situations changed, we changed with them. We adapted. Because every day here is like the other for us, I have to work a little harder to make sure we acknowledge any holiday. I want to continue to be as normal as we possibly can, regardless of our situation.
In addition to our challenges as caregivers, my husband and I are grieving parents. The holidays are exceptionally difficult for us, because we miss our son. To help us through the holidays, we incorporate our angel son into everything we do. His room holds our tree and family ornaments and presents.
I guess I've always felt our difference, but it is never more profound than during the Thanksgiving-Christmas holidays. It is such an effort to try to be normal, while also cherishing our difference. It's been an unusual life. To say the very least.
My friend's holiday home experience made me think, "Every year, our celebrations shrink a little. Soon, we celebrate in one room with just our small family. But that's OK. There is love in that room and we know that everyone is comfortable with what we cannot and cannot do. And we are grateful."
My book, The Four Walls of My Freedom: Lessons I've Learned From a Lifetime of Caregiving (House of Anansi Press) is available now from all major booksellers in the USA and Canada.
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