Nathan, one of Madison's BFFs, came over on Thursday and spent a couple of days and nights. It was a very nice visit. They hung out in the living room one evening and watched the feel-good movie "Love Actually". Since Madison typically needs to sleep in, Nathan took the opportunity on Friday morning to have his car serviced and get a smog check, fun stuff. Madison wanted to hang out in her room, so they hung out, fiddled on their laptops, and later watched the "The Holiday" in there Friday evening. Unfortunately church wasn't in the cards for Madison on Saturday. She didn't feel particularly rotten... she just simply didn't have the energy to get up early.
Madison's Aunt Sara mailed Madi a stuffed elephant, perfect for opening the door to discuss the elephant that's in the room or under the tree. We know all y'all love and worry about Madison and recognize how silly the question might sound... "how's Madi?" (people mostly tap dance around it). One of the things we've learned whether over the phone or in person, is to give people permission to ask questions about Madison by just bringing it up first.
We'd read and I'd posted about re-evaluating Christmas rituals (from David Kessler, a grief specialist: we'd seen him speak at the Cancer Support Community last year and attended his holiday grief Webinar last week). He wrote that there is imprinted pressure on our psyche to celebrate holidays... we've all had that since we were kids. He added that in a scenario like this our worlds lose the celebratory qualities, there's no need to fake it, and that it's actually okay to cancel Christmas. Later today Madi's Grandmother, aunt, uncle and cousins are coming over for a bit. It's not to celebrate Christmas, just happened to be the most convenient day to gather for family to gather that just happened to be Christmas eve. We talked about making a nice dinner, but then that would feel like Christmas. Given we have given permission to dismiss the gift-giving/receiving and other holiday rituals, we decided to keep it simple and will have and un-Christmas meal together.
On December 6th, Madi made the call to decorate the tree but there he was... the elephant in the room showed up. Madi was losing strength in her legs and becoming increasingly wobbly. Adding insult to injury, the song "All I Want For Christmas Is You" played out of the blue on the Amazon music channel. Ouch, each of us swallowing our tears. We didn't talk about it then and there, but did later. That was the point we decided (and had permission) to skip the holiday rituals this year. I think Madi did the tree for us, but that was the last ritual. When we see something Madi might want or use, we buy it and give it then and there... why wait until Christmas.
So we're going to get what we all wanted... "all I want for Christmas is you (Madi). We're at the acceptance part of this journey and we're at where we're at. No sugar-coating it, this is not okay... it just is. Each day we have with Madison is a gift and Madi seems to have a solid grasp of reality joining Him, while maintaining a sense of humor while she's still here. Colleen (mama bear) spent the night last night and will again tonight. Last Sunday her husband Michael brought over and cooked a great breakfast. (Psssst... Michael: what's for breakfast tomorrow : )
Wishing everyone peace and love.
Love,
The Jones/Johnson's
Madison's Aunt Sara mailed Madi a stuffed elephant, perfect for opening the door to discuss the elephant that's in the room or under the tree. We know all y'all love and worry about Madison and recognize how silly the question might sound... "how's Madi?" (people mostly tap dance around it). One of the things we've learned whether over the phone or in person, is to give people permission to ask questions about Madison by just bringing it up first.
We'd read and I'd posted about re-evaluating Christmas rituals (from David Kessler, a grief specialist: we'd seen him speak at the Cancer Support Community last year and attended his holiday grief Webinar last week). He wrote that there is imprinted pressure on our psyche to celebrate holidays... we've all had that since we were kids. He added that in a scenario like this our worlds lose the celebratory qualities, there's no need to fake it, and that it's actually okay to cancel Christmas. Later today Madi's Grandmother, aunt, uncle and cousins are coming over for a bit. It's not to celebrate Christmas, just happened to be the most convenient day to gather for family to gather that just happened to be Christmas eve. We talked about making a nice dinner, but then that would feel like Christmas. Given we have given permission to dismiss the gift-giving/receiving and other holiday rituals, we decided to keep it simple and will have and un-Christmas meal together.
On December 6th, Madi made the call to decorate the tree but there he was... the elephant in the room showed up. Madi was losing strength in her legs and becoming increasingly wobbly. Adding insult to injury, the song "All I Want For Christmas Is You" played out of the blue on the Amazon music channel. Ouch, each of us swallowing our tears. We didn't talk about it then and there, but did later. That was the point we decided (and had permission) to skip the holiday rituals this year. I think Madi did the tree for us, but that was the last ritual. When we see something Madi might want or use, we buy it and give it then and there... why wait until Christmas.
So we're going to get what we all wanted... "all I want for Christmas is you (Madi). We're at the acceptance part of this journey and we're at where we're at. No sugar-coating it, this is not okay... it just is. Each day we have with Madison is a gift and Madi seems to have a solid grasp of reality joining Him, while maintaining a sense of humor while she's still here. Colleen (mama bear) spent the night last night and will again tonight. Last Sunday her husband Michael brought over and cooked a great breakfast. (Psssst... Michael: what's for breakfast tomorrow : )
Wishing everyone peace and love.
Love,
The Jones/Johnson's
