And totally irrelevant here. My mother had dangerous, intensive brain surgery on December 17th, 2015. Before she went in she asked me to tell my sister-in-law "Happy Birthday" the next day for her, because she wasn't sure if she'd remember. She went into surgery at about 2pm, and we sat in the corner of the waiting room. We had all her stuff from the room upstairs, even her tree, on a large grey cart next to us.
Her tree; I don't think we've talked about her tree yet. While she was still staying at home, before the diagnosis of December 14th, she was weak enough to be mostly bedridden. I'd come out from Texas to take care of her after her biopsy. Saying "biopsy" is somewhat misleading- it makes people think of long needles inserted into organs and tiny tissue samples being removed. While it was true there was a long needle and there were many tiny samples removed, "biopsy" in this instance fails to convey two vital pieces of information. One, that to get to the tissue to be biopsied the surgeon needed to drill a hole through her skull. Two, that to drill the hole and insert the needle, her head needed to be completely motionless because they were inserting a needle so deeply in her brain it was almost to the center line.
The recovery from this kind of biopsy is more intense than any other type, and it was after the biopsy that she started having the weakness and numbness in her left hand and left leg. So mostly she stayed up in her room in bed. This was a very hard time for her- for all of us, sure, but especially for her. If you've never had something seriously wrong with you physically but not known what it is, I can't think of a way to help you understand.
Try to imagine that you're walking down a long hallway by yourself, and you suddenly hear footsteps behind you where there shouldn't be any. You look behind you, but nothing is there. So you keep walking. You can still hear the footsteps following you. You start to run until you're out of breath, but when you pause to rest, the footsteps are still there. Not any faster or slower than before, just there. But maybe a little closer than before. Who's behind you? You can't see anybody; you just hear the footsteps. It could be someone walking, just like you are. But it could be someone dangerous, someone hunting you. But you don't know.
So you keep walking. You look back once in a while, but you don't see anything. Sometimes the footsteps; sometimes they seem closer. Sometimes further away. You wish that whoever, whatever it was would just show up already so you could see them, but at the same time, you know if they're close enough for you to see they're close enough to see you and that could go very, very badly. You may wonder if you're going crazy, if the footsteps are even real or if you're imagining them. But slowly, so slowly it's hard to notice, the footsteps are getting louder.
That's kind of what it feels like, when you're body is falling apart and you don't know why. When you know the answers are coming and you both want them and are afraid to hear them. And you wonder if you're being ridiculous and weak and it's nothing but all in your head.
Which, as an aside, is a pretty accurate phrase. Glioblastoma multiforme, brain cancer, is all in your head. It doesn't go anywhere but your brain. But things that affect your brain affect your whole body. There's no where more dangerous, more pernicious to have something go wrong than all in your head.
This was where my mom was, emotionally and physically, the second week in December that I spent with her. I knew something of how she felt because I'd gone through two years of trying to figure out what my problem was medically before I found answers that made sense. It's incredibly depressing. It occurred to me one day that my mom loves Christmas, but all the decorations were downstairs where she couldn't see them. Being a person of more action than thought I went immediately to Walmart and bought her a fake 3 foot tall pre-lit fake pine tree and brought it home to set up in her room. When I came in with it, she looked startled. "Oh," she said, "I'd almost forgotten it was Christmas."
My heart fractured more at this than any other single thing thus far. She'd almost FORGOTTEN it was CHRISTMAS?!? This woman, my mother, who played Christmas music nonstop from Thanksgiving through New Year's Day every year of my life so far, who started shopping for next Christmas from after-Christmas sales, who started planning and coordinating all of our Christmas vacation plans when school let out for the summer, was having such a difficult and stressful time that from where she was, she couldn't even see Christmas right now.
Here was something up with which I would not put. My mother was NOT going to be denied Christmas. I set up the tree on her window box seat where she would see it every time she woke up, and last thing before falling asleep. But it was just a tree; I needed decorations. I called a wonderful and dear friend (not coincidentally the same friend who directed the making of the surgery survival care package) for help. I will love her forever, because she drove from Eagle Mountain to my parents' house in Payson with a box of homemade decorations. She came upstairs to my mom's room and decorated that little tree. Then she drove back home. For reference, that's over an hour drive each way just to spend fifteen minutes helping give my mom some Christmas normalcy.
That tree has followed my mom everywhere since. When she got the diagnosis and was admitted to the hospital, we set it up in her hospital room. After surgery and since it was a fake tree, it followed her into the ICU. It was the only Christmas tree and nearly the only Christmas decoration in the entire Intensive Care Unit, and so the staff asked if they could put it up in her room near the front window so everyone walking by could see it. It followed her out of the ICU and back onto the 4th floor neurosurgery unit, where we stood in a circle around my mom on Christmas Day and sang Christmas carols. It went with her to rehab, and home with her, even though Christmas had passed. No matter what, my siblings and my father and I have made sure she did not forget Christmas again. Even though the meaning of the tree has changed somewhat now.
The "M for Sara's Miracle" movement that my aunt created began after she'd had surgery but before Christmas. There are thousands of people praying for my mom, and my aunt wanted a way for her to feel their love and support. That started in a text on Wednesday, December 23rd. The text message read: "I am getting the word out for family, friends... or anyone who desires and we have has to pray for Sara to go to Hobby Lobby or Michaels or somewhere else and buy a letter "M" for miracle. Have them sign the back and we flood her room with M's because she can't have flowers or fruit in her room. Miracles have already happened but this a reminder we need the big healing miracle which is Sara's request."
Within days my mom's room was flooded with "M"s signed with supportive notes and messages. Some of them were even "M" garlands and ornaments, so we decorated the tree with those, too. Now it isn't only a small Christmas tree, it's a miracle tree, which I think is a little redundant because Christmas is already about miracles. But a little redundancy can be good for emphasis.
Even though she was supposed to be in the ICU for up to 10 days, her surgeon had her transferred to the 4th floor on the morning of December 25th. There were some visiting restrictions for the hospital in general, but the ICU only allows 2 people at a time, and when he had her transferred he told the nursing staff, "You let her have anyone and anything in her room that she wants. No exceptions."
So on Christmas Day, in the evening, we ALL went to see my mom. My whole family, my brother and his wife, my dad, and my sister, her family, their tiny mop dog and their new puppy. Yep. We brought her a puppy to play with on Christmas. We stood in a lopsided circle with her at the head and sang Christmas songs; some were even the nice ones. We all gave her hugs and talked and laughed and just enjoyed all being together. We were pretty loud and a little obnoxious and very welcoming, just like my mom's surgeon had expected so he'd had the nursing staff put us at the very end of a mostly patient-free hallway so we wouldn't disturb anyone else, and made sure the nursing staff knew to tell us that up front.
I like her surgeon.
My mom had her Christmas tree, and presents, and her whole family plus some extra furry ones on Christmas Day. I know this post is a month or so late, but in my defense we finally got our last Christmas present in the mail yesterday so I feel like we're right on schedule.
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