How was Halloween?
“How was Halloween?” My response, “Hard.” Just when you least expect it, Duchenne hits you in the face. My kids have had their Halloween costumes for a month and been wearing them almost every day. They chose costumes from their favorite cartoon, PJ Masks. Caleb was Owlette and Dunky was Catboy. They have been so excited for October 31st to come, but then it came. It was different than what I expected, and I think different than what they expected or remembered from previous years.
Our neighborhood is the best. We are surrounded by wonderful neighbors that we love dearly that happen to have kids all between the ages of 2 and 5. It’s cold this night in Minnesota, but that won’t stop us. We all meet in our front yards to take on Halloween and collect candy until they can’t anymore. They first collect special Halloween gifts from the neighbor kids and then move on to the rest of the ‘hood. The first few houses are okay, but then Caleb and Dunky quickly realize that they can’t keep up. “It’s not fair mommy, they are so fast. I’ll never be able to get as much as they get.”
My eyes swell with tears, but I hold them back and remind them that I’m with them, will not leave them and we will have fun no matter what. There is no fault or blame, these other kids have been dreaming about this same night running from house to house to collect as much candy as possible. I would expect nothing less, no different than what I did as a kid.
We visit a few houses and it’s going okay. But it deteriorates quickly. It goes something like this:
1) Caleb starts getting frustrated that he can’t see the candy well enough to pick what he wants through his Owlette mask.
2) They both start to complain that they can’t pick up the candy with their PJ Masks gloves on, but refuse to take them off because without the gloves no one will know who they are.
3) Owlette and Catboy start getting cold. They aren’t running like many of the other kids to keep them warm.
4) The cold starts to stiffen their muscles and the whining starts.
5) Mom swoops in with the double stroller to help save the day. No need for those kiddos to walk! We WILL still get more candy, I can promise you that Owlette and Catboy!
6) Every front door we encounter thereafter brings me closer to a complete meltdown.
You see the double stroller is practically part of our family. We use it often, maybe even more than we use our cars. Our boys are compact, so they fit in this double jogger just perfectly, even at ages 4 and 6. It’s an apparatus we bring with us everywhere we go. Not because the boys can’t walk, but because if they don’t have another option, they could push themselves too far. And with Duchenne, a progressive neuromuscular disease, pushing too far can be damaging to the bit of muscle that still remains.
But on Halloween, this double stroller being with us meant something different. It meant Caleb and Dunky were sitting in the stroller, at the bottom of the stairs of the front doors, while I climbed the stairs to ring the doorbell and say “Trick or Treat” on behalf of my boys. And upon the homeowner answering I found myself saying “My boys have a muscle disease and they can’t climb the stairs, can I take your bowl of candy and bring it to them to pick a piece?” It looked like this
But do you know how many times you can repeat that phrase before having a meltdown? I know now and it isn’t many. Three, maybe four.
So the boys and I agree that it’s time to head home. They are freezing and I’m about to burst into tears. All the sudden that stroller is to thank, we get home swiftly. Dan greets us at the door with a smile. It’s that smile that kept me from bursting into tears. The boys are so happy to see daddy and show him all their candy. I continue to survey the room. Caleb and Dunky’s faces are lit with joy and their daddy is happy to embrace them bring them warmth, like only daddy’ can do. I smile and excuse myself to the fire outside at the neighbor’s house that is keeping the adults warm. We warm ourselves with the fire, cocktails and good conversation while Dan puts Owlette and Catboy to bed.
It feels like I’m torn inside out by Duchenne when I least expect it. I did not expect Halloween to be a time that would remind me of the beast that Duchenne is. It’s times like these that test my faith, test my perseverance, test my strength. I will not let Duchenne win. I come out stronger and pushing harder and faster for a cure so that one day they may be able to hand out Halloween candy to kids at their own front door.
Thank you to my husband, my kids and my beloved neighbors that lifted me up on Halloween night. It truly takes a village.