December 22, 2022
Jessica Curran is a DMD mother to her son Conner, CRD board member as well as a DMD patient advocate.
Let Heaven and Nature Sing…
Take the pictures, and the trips, make the call and build the memories. They will create footprints in your heart that may just lead you back to joy one day.
I have to say I have always loved this holiday season and all the excitement that precedes it. The Christmas music, lights around town, decorating the tree, watching the boys make their Christmas lists and gathering with family, just to name a few. My parents return home from down south right before the holidays and so when this finally happens, it really feels like Christmas.
Christmas is a season, not just a day. I love that we can prepare for an entire month- as exhausting as that sounds, and we do pass on some events, I like that there is more opportunity to do fun things as a family. When we build the happy memories together, I believe they will comfort us during the difficult moments in life. Many times, joy takes a back seat, living with Duchenne and somehow, the memories of enjoyable pastimes, allows me to pull strength through reminiscing.
As much as I enjoy this season, I have a pretty solid rule in my mind that it has to be at least December 1st before the Christmas music comes on. Like some, I don’t want to brush past Thanksgiving, and how about Halloween? It’s too much when I am in the middle of enjoying one holiday, and the stores are already on to the next.
You all know what I mean. A diagnosis like Duchenne is a continual reminder to stay in the moment, really be present and linger there a little longer. For some reason the Christmas holiday season seems to detain time a little longer, sort of like a pause button. This means something.
We try not to let Duchenne define our life or the places we like to go. Conner started to use a scooter this past Spring for long distances. I can remember so clearly early during the diagnosis days, I would see other Duchenne boys scoot around in their wheelchairs. I saw how happy they were, but I couldn’t help but feel sad for them.
I get it now; I see things differently. It’s funny how your experiences altar your lens. Conner’s scooter allows him the independence he needs to join the family in activities outside our home. We usually bring it wherever we go. We are an on-the-go family. We have always been this way so Conner’s used to being out and about.
His scooter is like a companion at this point. This was not an easy transition for him at first, but we folded it into our lifestyle pretty quickly which makes going out more enjoyable for all, especially Conner.
We like to take walks through town looking at all the Christmas lights. Conner scoots beside us as we walk. I try to think of the big picture, being together which is most important. I learned that when we roll with it, our kids do too. I can see now what Conner’s teachers mean when they tell me that Conner rides down the hallway in his scooter, his friends walking next to him, acting like any other Middle School kids. I know it may not always be this way, but it is now, and I am grateful.
At home, one of my favorite things to do is decorate the tree. We all wear a Santa hat and the Christmas music plays loud from the kitchen. “Hit the Christmas Music, Ky! And everyone grab a hat.”
Conner rolls his eyes at me, but I know he loves it too and he looks forward to it just as much as I do. The boys sip on hot chocolate and eat candy canes. They all want to put the star on, but they secretly love that Chris has this job. I don’t get to decorate as much, as I am snapping away with my camera, trying to capture these sweet moments.
My heart thumps away as I am hoping to get the best shots. I love hearing the stories that come out of their mouths. As they rummage through the boxes of ornaments, memories of making things with teachers, and hearing Chris talk about Grandma Peggy’s handmade ornaments fill the room.
“Mommy who made you this?” Holding up one of my past student’s gifts. An afterthought I always seem to get is, maybe I should have put the camera down, but I never regret viewing the pictures year after year. Not ever!
Among the laughter and lightheartedness, I can’t help but notice Conner’s decline this year.
I see how he struggles bending down just to pick up an ornament in the box. It’s these simple things that pinch my heart the most. Taking my mental notes as usual, I stop in my tracks to watch him walk over to the tree. The gratitude I feel takes my breath away. He’s walking and I can’t help but think that next year will look different. For now, I’ll enjoy this sight, I take my own advice to stay present.
As much as we like to do all the things, I find myself in some sense slowing down. This is the silver lining I never thought I’d have or even say out loud. I was given this gift after Conner’s diagnosis, but it comes with a price.
As they say, not much in life comes without a cost. Slowing down and relishing in the little things that I call the big things. It’s really the simple details this holiday season brings that get etched in my memory bank.
Talk about simple, I stop whatever I am doing just to listen to the three boys decide what day it is, as they open their advent calendars. They act like the chocolate is the best they ever had, even though they had the same sort of piece yesterday. I love this and get a good chuckle every time.
They usually start talking about football, asking Conner all the deets and stats on last night’s game… knowing he caught up with the highlights already and arguing about who’s MVP of last night’s game. The normalcy I hear brings a smile to my face. I honestly don’t think I would have thought a moment like this would be marked as special had I not been on this journey.
The most memorable experience we made this holiday season was going back to Make A Wish where Conner was granted his number one wish to go to the Superbowl just last year. Just a few weeks ago they put on a special Christmas event for all the wish kids.
I never in a million years thought that this would be a place I looked forward to visiting. How painful that first phone call was, but it truly changed our lives. I saw the joy in Conner’s face scooting around the property, observing the lights, enjoying a visit from Santa and relishing in a horse and carriage ride. All while reminiscing the dream wish he received and all the amazing experiences he had on that trip. I’m so glad I made that call.
The holiday season helps me notice all that I have to be grateful for. Although my hope holds me up and becomes my footing most days, I can still find so much joy in this life. I believe I will always cling to the memories we continue to create as a family, and I will enjoy the little “big” things I’m blessed enough to be a part of.
Joy to the world.
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