BY GUEST BLOGGER, KATIE VESCELUS

My family celebrates the Christmas Season like the Sugarplum Fairy pirouetted holiday spirit all over our collective souls. Our younger son, Matthias (age 11), leads the celebratory charge with all of the enthusiasm of Buddy from the movie Elf. We do not permit anything “Christmas” until the Thanksgiving meal is complete, but once the last sweet and salty morsel of pie is consumed anything goes. Our home glitters with decorations and lights (even the bathroom looks festive), and Christmas music plays from all corners of the house, mostly because Matthias sings it all day every day….seriously…if someone could make him please stop I will give you one of the 37 strategically placed candy canes in our living room.

Our family has tons of annual Christmas traditions to keep us busy. Every year we go out for a nice dinner followed by a holiday themed show. One of our favorites is the Indianapolis Symphony Orchestra Yuletide Celebration because nothing says holiday spirit like a stage full of tap dancing Santas. We bake cookies and have family movie nights. We go to a local farm to pick out a tree.  One of those infernal moving elves creates daily shenanigans with a t-rex sidekick. We eat all kinds of treats and drown ourselves in good old family holiday cheer until New Year’s Day.

You’d never know by looking at us in our Christmas onesies, recreating the finest moves from The Nutcracker, that this is also the most painful time of year for my family. I cry more in December than I do the entire rest of the year, and sometimes it hurts so much I can’t breathe. Matthias is a cancer survivor, and the cancer left him completely blind. He was diagnosed with bilateral retinoblastoma (cancer of both eyes) at about 3 ½ months old. He fought cancer almost the entire first year of his life, and he ultimately had his eyes surgically removed in the summer of 2009. He remains cancer free today, but he is at risk for (and has experienced) long-term side effects from the treatments he endured. He is also at risk for more cancer and goes through regular exams and testing to make sure he remains cancer-free.

Matthias was diagnosed on December 10, 2008, and that anniversary hits me like an icicle to the heart every year. I won’t dwell on it the entire day, but at some point I will remember that moment when the army of doctors, social workers, and nurses piled into a hospital room and told us our baby had cancer and was permanently and severely visually impaired. For a moment, I will feel every single emotion I experienced that night as I learned our lives had changed forever.

Everyday I will notice the beauty of the season surrounding me, and I will hurt knowing my son cannot see it. Beauty is everywhere during the Christmas season, from the twinkling lights to the soul soothing peace of gently falling snow. There’s magic everywhere that I will genuinely enjoy with our 13-year-old son, Magnus, while my heart silently aches for the younger one who cannot join us. The complex onslaught of emotions is exhausting and nonstop. I am constantly filled with the deep love, magic, and wonder of family holiday traditions while I breathe through the losses we continue to endure 11 years after the cancer diagnosis.

When Matthias was younger, I ignored the hurt throughout the holidays, choosing to focus on the good. It sounded smart at the time, and it was what everyone encouraged me to do. Over the years I learned that doesn’t work for me. Ignoring the negative emotions doesn’t erase them; it stacks them like sticks of dynamite. Eventually they explode altogether, likely in an unpleasant, embarrassing, and destructive moment. These days I curl up in bed and have a good, solid ugly cry when I need it. I talk to my husband, close friends, and family about the hurt. Sometimes I silently acknowledge an upsetting moment and take deep breaths. I let it out on my terms, bits at a time. I allow myself to feel all of the sadness, loss, and pain of the moment, and then I release it.

I love raising a blind son, and I am grateful for the myriad of ways he has changed the way we experience the world, including Christmas. Because of him, our lives are filled with sounds, scents, and experiences that enhance everything we do. We wander the rows of Christmas trees seeking out the best smelling one, not necessarily the prettiest. We bake constantly to fill our home with the aroma of holiday spices. We walk in the snow and feel the fat flakes gently melting on our cheeks, and then we share the moment that first sip of creamy hot chocolate warms our bellies. We snuggle on the couch in a giant pile under fluffy blankets and watch Christmas movies with audio description for the blind. I feel immense gratitude for a healthy, happy family, and I hurt for our losses. I allow room for both. By making space for the hurt, I can more fully embrace and appreciate the true beauty of each moment we have together as a family throughout the holiday season. Now, if you’ll excuse me, I need to go decorate my son’s long white cane with snowman lights.