I have always loved the Holidays and in particular Christmas. I always say Christmas is the only good thing about winter, after that it’s all down hill until spring. I’ve always spent Thanksgiving at my family’s house. Thanksgiving has been my mom’s big holiday since I can remember. The same family come in from out of town every year to her house for Thanksgiving. Christmas is the Holiday I enjoy going all out for in my own home. I’ve always loved the decorations and excitement of the season. Growing up my siblings and I would be the ones the unpack and setup all the Christmas decorations.
Holiday traditions I grew up with I still hold to today. Listening to beach boys Christmas album while decorating, hanging Holiday cards on my back door, driving through neighborhoods looking at lights, champagne on Christmas morning, and opening gifts in a circle one at a time. These are things that I have continued on in my own traditions and hope to pass down. While I love the holidays there are a lot of things that look different for my family now. Some traditions are enjoyed all the more with Will like listening to and playing Christmas music. We have a piano in our home and own a violin. I’ve taken to reteaching myself how to play those instruments. While I’m far from a musician I can plunk out classics like Jingle Bells.
While many of these traditions are enjoyed with Will some are just not the same. As with most holidays there is certainly a visual component but so much more with Christmas. The light and wonder of it all just isn’t quite the same. Christmas is mentally difficult for me and can come with many lows. Just thinking about how he can’t see and enjoy the lights on the tree and house like I can. Or the presents under the tree, or his stocking filling up. There are other traditions we won’t be inclined to take on either like elf on the shelf, or pretending like Santa was here with flour foot prints on the floor. While we still have a lot to enjoy these little sadness’s creep in more than much more than I'd like.
We recently got family photos done for Christmas cards. The photos are beautiful and I was looking at my picture wall and how I could rearrange it to fit new photos but this thought came with a sadness. Growing up in my mom’s house she had a long hallway with a wall of photos incorporating both sides of our family. I used to love looking at the wall and learning who everyone on it was. When we bought our home I started my own photo wall headed up my staircase. My plan was for one side of the staircase to be our extended family and the other to be just our little family. It is these little things that I find myself thinking "what for." These photos aren’t something Will can enjoy. He will never know the joy of seeing the lights on the tree or in our neighbor. I find myself marveling at them and then immediately my heart fills with sadness. This time of year you can’t go online or turn on the tv without seeing some child looking into Christmas lights with a look of marvel.
His Therapy team talked to us this week about how important it is to enjoy these moments in our own home when we can. Holidays can be overwhelming with an the sounds and people around, being in our home certainly helps him and as a result me.
While there is a bit of a darkened cloud over what normally is my favorite time of year we have started finding new ways to enjoy the holiday. Most nights close to bedtime Will becomes more tired and fussy. We take this time to sit down at the piano together and play Christmas songs. While Jingle Bells is a clear favorite we are slowly learning others. Will has even memorized the tune and can copy the rhythm of Jingle Bells when he’s in the mood.
Our tree is right in the living room by the piano and Will’s toys. I tried to put ornaments I thought he’d like to touch towards the bottom but for whatever reason he does not seem to be interested. His favorite decoration is a through pillow I have with a fuzzy white dog on it. I catch him all the time climbing onto the armchair and rolling around with it. Yesterday I found the pillow in the dining room.
We are tying our hand at more crafts. Since photos won’t hold memories for him I am trying to create more textured memories. This year we’ve made a hand print ornament using modeling clay. My goal is to make one every year so that he can feel how his hand has grown and changed every Christmas. I also took some inspiration from pinterest and created little Mistle Toes. Using washable finger paints we made little footprints decorated for Christmas. If you close your eyes and feel the painting you can feel the outline of the foot prints.
Time is ever ticking and making memories with my little man around these special times is extremely important to me. I keep trying my best to ensure he has things that make not only this Christmas special but future Christmas’ as well. There will always be a piece of me grieving for Will’s sight, some times it hits harder than others. Christmas is certainly one of those times for me. I hope as Will grows and learns to appreciate the holiday in his own way the grief will lessen. But for now like all things with his disease there is certainly times of darkness.
Next month we will be headed to Cleveland for a recheck with our specialist. Will’s cataracts have worsened and the shape of his pupils are changing. Stay tuned for our next chapter in this journey.