Merry and Bright, Maybe

It’s Christmas Eve day and it’s raining. Tonight it will turn to snow—lots of snow—and keep snowing into tomorrow.

A white Christmas is magical. But my expectations about this holiday are modest. Will Jack behave? Will he be overwhelmed at the family parties? Will he get cabin fever since he doesn’t go out in the snow? Will this weekend be harried or happy?

A positive attitude and planning only goes so far in the face of someone else’s behavior. I can’t change it, only accept it, cope with it, perhaps attempt to influence it, but with no guarantees.

We aren’t sure we will even make it to church on Christmas Day since we won’t have any sitters for Jack and our ward is combining with the neighboring ward for sacrament meeting. This means it will be crowded. There will be lots of singing, which I personally love, but which may simply provide Jack repeated opportunities either feel sensory overload or to applaud after musical numbers as he did last week when the Primary children sang.

In years past, my complex feelings about Christmas stemmed from my expectations. When I expected something sweet and magical, I was usually disappointed by something real and raw and frenetic—by something flawed. So I lowered my expectations, which surprisingly resulted in two outcomes. When I expected something less than ideal, I found myself a) less excited about the season and b) pleasantly, genuinely surprised by anything positive at Christmas. This is what I did: expect practically nothing, anticipate less, accept all of it, and sometimes enjoy the fleeting gifts and unexpected miracles. There was nothing else to do.

There were two Christmas Eves when Jeff had to stay home with Jack all evening because he was too violent and unpredictable. I took the other boys to my parents’ house and Grandma Snow’s house and felt like I had cleaved my heart in half with a butcher’s knife. We were divided as a family, not because of geography, but because of disabilities. It was disheartening.

For the past dozen years, Christmas has never not been complex and shifting. These were seasons where I felt sad, hopeless, depressed, uninspired.

Yet I can identify memories which broke through the difficulty, letting in pin pricks of light through the dark shell of Life with Severe Behavioral Disabilities.

There was the Sunday when two men at church sang “O Holy Night,” and I felt like my body was literally buzzing with joy and gratitude. There was the winter morning I sat on the floor by the fire and read A Christmas Carol in one sitting, and had renewed hope for the process of living.

There was the magical evening after Christmas five years ago when Truman was released from the NICU, and my whole family was together in one place. That was the year Jeff and I sat on the couch with our three big boys between us and watched an entire movie together (Fantastic Mr. Fox), without any behaviors, and I tasted heaven.

A backward look makes me wonder if the best Christmases aren’t the ones when things flow with precision and perfection.

My life seems to indicate that the truest moments of Christmas hope burst through the hard scales of ugly times and offer a ray of light in the gloom.

  8 comments for “Merry and Bright, Maybe

  1. Genevre
    December 24, 2016 at 11:30 am

    I wanted to follow Jack’s lead and clap too, I don’t understand fully why we can’t show gratitude in the form of clapping. We understand sensory overload and will be coming equipped with ear plugs 🙂 I hope you have a great Christmas.

  2. Kerri
    December 24, 2016 at 11:31 am

    I wish you moments of joy this weekend. You certainly have brought me plenty of them.

  3. Terry
    December 24, 2016 at 12:46 pm

    Merry Christmas Megan! Thanks for your lovely words this year – they have helped me remember to keep my expectations low and my acceptance high. Love to you and your family. ❤️️

  4. December 24, 2016 at 2:56 pm

    I dunno about Christmases that fall on Sundays.

  5. Catherine Ethington
    December 24, 2016 at 3:04 pm

    Wishing you a glorious moment of hope and love to hold onto. Thank you for being a light for me and many others.

  6. Nicole Kalkowski
    December 24, 2016 at 3:47 pm

    I plan on sharing this blog with friends and family. Thank you for sharing. I’ve found it’s difficult for families who don’t have special needs children to grasp why the holidays can be so difficult. We had to change just about everything regarding the holidays after my son Ryan was diagnosed. I no longer have expectations either, but my heart hopes for really big gifts like Ryan not having a screaming meltdown during moments that where intended to be magical, our family doing anything where we can be together with all children being healthy, and a day without seizures. Wishing you and your beautiful family a Christmas filled with surprising gifts of happy uncomplicated moments.

  7. Nicole Kalkowski
    December 24, 2016 at 3:48 pm

    Thank you for being a light to me and many others! ❤️

  8. December 25, 2016 at 5:21 am

    Merry Christmas, sweet Megan! There are times I wish I didn’t understand things like this post so well. I hope some sweet and magical moments are sprinkled in throughout your day. Thankfully the chaos might just help us recognize and appreciate those moments a little more.

Leave a Reply

Your email address will not be published. Required fields are marked *