A Christmas Story

Brady loved holidays, so it’s no surprise that he absolutely adored Christmas. When he was little, he could barely sleep on Christmas Eve. His excitement was electric. I always felt like he had literal visions of sugarplums dancing in his head, covers tucked up to his chin waiting for Santa. In those early years, we tied a red ribbon to the foot of each child’s bed after they were asleep on Christmas Eve. In the morning, they would wake up squealing and follow the long satin trail downstairs to the tree, straight to what Santa had brought. It was magical.

Our early Christmases were full of familiar traditions: leaving cookies for Santa, cutting down a tree at the farm, Christmas Eve church, elf mischief, attempts to catch Santa in action, wrapping paper flung everywhere. My camera was always ready. We have the typical photos with pajamaed little faces, messy living rooms, the whole house aglow.

Santa wasn’t a big deal in our house at first. But when Brady was four, he suddenly became intensely invested in Santa, so we leaned into the North Pole a bit more. We were living in a Chicago suburb at the time, and at his request we went to the mall to meet Santa. Brady could barely contain himself.

After hours in line, he sat on Santa’s lap and froze solid, just like Ralphie in A Christmas Story. He didn’t say a single word. He just stared in disbelief. Meanwhile, Eden was horrified and went completely limp, slid off Santa’s lap, and made a run for it. As a result, our photo that year does not include Eden. No crying, no fear, just willful toddler boneless collapse. Sloane, meanwhile, was unmoved. She thought his name was Santuck and knew him primarily from a cameo in Wonder Pets.

Santa yelled, “Help! I can’t hold this baby!” as Eden beelined back to me. You can’t tell from his expression, but Brady was thrilled with the experience.

A few years later, in first grade, Brady heard rumors that Santa wasn’t real. In typical Brady fashion, he launched a full investigation. Every day he asked the same question, and every day I gave him the same answer: once you hear the truth, you can’t unhear it. Are you sure you want to know? He thought about it for weeks. Finally, on a walk with our Saint Bernard, he announced he was ready. So I told him. He stopped walking, stared at me wide-eyed, jaw open, and said, “I did NOT see that coming. I thought you were going to explain how the magic works.” He genuinely thought I was going to take him to the North Pole. I was crushed that I had miscalculated the root of his questioning.

Despite his shock and my misjudgment, he kept the secret faithfully for his sisters. He even helped me manage the ever-expanding Elf on the Shelf population, complete with spouses, children, in-laws, pets, and wildly elaborate backstories. I have always regretted telling him so early. When your children are small, you cannot possibly know how fleeting that window is, the season when Christmas feels impossibly magical. I would give anything to stand inside those red-ribboned mornings again.

As Brady’s symptoms progressed over the next few years, Christmas became increasingly complicated. His symptoms waxed and waned in severity and were always unpredictable. His body changed daily. Some mornings were better. Some evenings were better. Sometimes the entire day disappeared into symptoms that rolled in like storms and refused to leave. Spasms were the worst. They could last for hours, and debilitating dyskinesia always followed, with Brady thrashing uncontrollably until that wore off. This would result in another long stretch of time where he couldn’t move at all. Then, usually, mercifully, there would be a window following all of this where Brady would emerge and feel good for about an hour. We just never knew when that window would come, so we had to be ready to seize it.

Imagine trying to plan a holiday around that while preserving any sense of magic. But we did. Year after year.

In December of 2015, everything unraveled. Brady was in the hospital in the days leading up to Christmas, enduring test after test. We found a doctor we believed might be a game changer, and he saw us on Christmas Eve. Survival took precedence over everything else. I remember leaving his office on the other side of the state, arriving home late that night and rushing to Target, grabbing some last minute gifts in a daze after tucking my kids in. I don’t remember what we bought. We were just trying to stay afloat.

December, 2015. We learned nothing from these tests.

Another year, after a long hospital stay, we set all the gifts up in piles in the basement and waited for the exact moment Brady could enjoy them. When the window finally came, we told the kids Santa had called with exciting news: our house had been chosen as the first delivery of the year! Gifts were in the basement, ready to open.

Later, when Brady was off Sinemet and things were slightly more predictable, Christmas seemed easier again, and allowed for a bit more advance planning. But then presents became more complicated. Now Brady could not speak, or move, or sit up. How do you buy gifts someone will enjoy and use that don’t require being used with hands, or movement, or taste? We figured it out the best we could.

Brady loved giving gifts, and was thoughtful and generous. Sometimes he gave things he personally loved. One of my favorite gifts ever was a red Texas Rangers hat he bought for both of us. No explanation. He liked it. He wanted me to have it too. I still love that hat.

Last Christmas, I barely took photos. Brady couldn’t open his own gifts so I was helping him. He was thankful and delighted. There was a full size arcade game, Pac-Man, for his room. A PlayStation-shaped light for the desk in his bedroom. An Xbox pillow shaped like a controller. A massive Lord of the Rings Lego set and several smaller BrickHeadz sets, one was Lord of the Rings and the other was Star Wars. We had one of these left unfinished when Brady died: Legolas. We had laughed about it together, the idea of a Lego Legolas. He is still in pieces on Brady’s desk. The others are finished and lined up. We built them together, piece by piece, his fingers under mine. I would pinch his fingers over the pieces to snap them into place. He was really proud of those legos because they took a long time to assemble together. Our two person lego team made for an unusually slow process.

I didn’t know it was the last Christmas. I don’t have a photo of him opening those gifts. I don’t remember everything we gave him. I wish we had finished Lego Legolas.

I was looking through old photos and realized how few Christmas pictures I have from those later years. Before 2014, they are plentiful: sparkling eyes, bedhead pajamas, crumb-covered plates, tree farm memories, Santa magic. A whole archive of joy. After that, the photos thin out. Near the end of Brady’s life, I was busy helping him participate, holding his gifts with him, guiding his hands as he opened them. We would sit together afterward, admiring each gift, talking about where it should go or how he might use it. The girls would run off with their things while Brady and I figured out how to enjoy his together. Often he just wanted to sit and look at them. Sometimes he picked one and simply held it.

Those moments were precious. They were also complicated. And because we had to be so physically involved with Brady’s day, they weren’t always photographed. I didn’t know what was coming. I didn’t know these would be my last chances to capture Christmas with my son.

As I consider all of these things and as Christmas approaches, I find myself wrestling again with the extent of Brady’s suffering. While it has taken intention to get here, I will say I absolutely do see purpose in suffering. I see what it shaped him into: a warrior and a gentle soul with more wisdom than most people could gain in an entire lifetime. And still, I would never have chosen this path. Would anyone? My precious boy suffered and suffered and suffered. He wanted to move and could not. He wanted to speak and could not. He wanted to go to school, and have a sleepover with his friends. He wanted to eat food and run and jump and cannonball into a pool. His desires were simple and pure. Sometimes I see carefree children sprinting through a grocery store, unaware of the miracle of their own legs working, and I cannot help but wonder why Brady didn’t get that.

And then, just as quickly, another truth rises: Heaven balances the scales. What was taken from Brady here has already been returned in full, and multiplied. I will see that redemption with my own eyes one day. In the book of Job, everything lost was restored many times over. I think of that so often now when I am missing Brady. Abundance replacing sorrow, eternity replacing loss. Brady doesn’t have to wait for it. He is there. My loss is his gain, which is what any mother would choose.

This Christmas feels so strange in ways I never imagined. It was strange not to buy gifts for him. I saw an Atari console he would have loved because he adored vintage video games. I saw a funky Carolina Panthers light we could have hung above his bed. It was weird to find these gifts and walk away instead of buying them. We did stockings early this year for the girls, hoping to soften the first Christmas without Brady. I pulled two stockings off the mantel and left his hanging there, empty. Walking back to the tree with just two felt wrong. There was no good solution and everything felt stupid; no one enjoyed it. I’m not sure Brady would approve of our despair, but this first year without him was inescapable. I hope next year is a bit more smooth. Brady died at an impossible time of year, not that there is ever a good time to lose someone you love. But we were thrust into Halloween, Thanksgiving, Christmas and New Year’s. His eighteenth birthday is coming this Spring. I thought traveling might help for Thanksgiving, but it didn’t. Grief travels light and fast and follows you everywhere. So for Christmas, I decided to just stay home.

Brady has now been gone for three months. For 94 days. Sometimes it feels like I could look up and see him dozing in his chair. Other times it feels like he has been gone forever. Time behaves strangely without him, and now it has carried me here. Tomorrow is Christmas Eve. When I was a child, it was my favorite day of the year: parties with both sides of my family, cousins everywhere, food, decorations, and so much joy. Now it is time to begin figuring out what Christmas looks like in this new life.

Christmas has always asked something daring of us. It asks us to believe what we cannot see, to believe that light shines in the darkness, and the darkness does not overcome it. That is the story I have told my children every year for seventeen years: Christ stepping down into a weary world, choosing nearness over distance, hope over despair. The great Light of the world, our path to salvation.

Every Christmas Eve, our street glows with luminaries, small candles in paper bags lighting the dark. I’ve always loved this tradition. I usually sneak outside for just a moment to admire them, because they are so quietly beautiful. I’ve never been able to help set them out.

This year, the luminaries will remind me of Brady. Not because he is gone, but because he was light. Joyful, funny, kind, steady light. I miss him with my whole soul, and I don’t want that to change. When the pain of separation feels unbearable, I remember that we are not our bodies. I watched his soul leave. His light didn’t go out; it just went ahead.

So on Christmas Eve, I will stand outside and look at our beautiful luminaries and thank God for the boy who lit up our home, who lit up our lives, and who will light my path until I see him again.

Merry Christmas, everyone.