Merry Christmas, Whatever That Looks Like

We all love a good Christmas tradition.

Decembers filled with sweets and icing and candy; trips to special places with lots of fun and noise and colors; driving around and looking at the pretty lights; Christmas parties and gift exchanges; and a million other special little moments.

All of us who are parents went into this imagining certain sweet holiday moments we would have with our little families. We had beautiful expectations, and we all know that our actual realities are often quite different! I know that’s not unique to parents who have children with special needs. But I do think special needs families often experience this gap between expectation and reality at a different level.

It’s not just missing the party because a child got sick. It’s knowing the party was never an option because the child, who craves friendship, is also overstimulated by crowds. It’s not just running out of time for gingerbread houses. It’s realizing the much-anticipated activity actually became a trauma trigger when a child ended up with a meltdown instead of a frosted gingerbread house. It’s not just a crying child when we thought they’d love Santa’s lap. It’s experiencing a prolonged mental health spiral because the Santa story convinced the child that the house is not safe from strangers, thus making them wonder if they can even trust their parents at all.

There’s an additional gap between our hopes and realities - not just the distance from what we expected to what we experienced; but the distance from what we expected to what we could even hope to say “yes” to.

I give mostly trauma examples because it’s my world, but it’s not just families like mine that experience this. Families come in many, many shapes and sizes, and any of us who don’t fit a “typical” mold find ourselves experiencing some form of this.

Watching the rest of my bubble experience this loss through Covid has been an intense and interesting experience. This grief for all of us, even if temporary, is very real and deep. For families, these Christmases at these ages won’t come back again. The loss is real and felt and difficult. And in that way, I feel that more people can relate to the special needs experience than ever before. Yet, at the end of it, “typical” families have a “someday back to normal” to look forward to; whereas normal for many of us still holds that gap between our desires and our possibilities.

I don’t think it helps to draw a map and label where each of us is allowed to stand in our loss or grief. Loss and grief are real, period. There’s no harder, really; all hard is the aching difference between our hopes and our realities.

But I do think it helps to breathe deep and look at the people around us as we go about our days and our holidays. If the pain of having to deal with additional health, safety and mental health concerns during Covid Christmases is fresh for you, then try to hold a snapshot of that feeling so you can continue thinking through that lens.

Most of us will go on to have normal Christmases again. Of course, life keeps happening and each year brings its own challenges. But there will still, I hope, be a sense of returning to normal.

When that happens, I long to see us all with a new set of tools in our toolbelt. We can understand grief in a different way. We can understand accessibility needs. We can understand missing what you longed for. We can understand the fear of losing control. We can understand the trauma of loss.

Maybe we can understand special needs families better going forward. Invite, invite, invite! But not just to your house. If someone can’t go, if it’s not accessible for their family, don’t forget them. Ask what their family CAN do. Can you drop off a care package? Can you have hot cocoa together over Zoom? Can you pick up one or more kids while the caregivers find a way to help the children with different needs also have a special moment? Can you keep sending Christmas cards even if you didn’t get one back? Or just text “I’m thinking of you” to someone you haven’t seen in a while? Is there something even bigger - even more special - even more personal?

Don’t worry about whether it’s been too long since last time. Don’t worry about small talk first. Just jump in. Just let them know you’re there, and you remember what it was like to be on the outside wondering when and if you’d get back in.

And while you’re taking snapshots for your toolbelt - please also remember the joys. Remember the moments you felt good and whole in the little things, even more than you would have if the big things had all been available to you. There’s joy in hunting out novel and creative ways to have special moments. It’s not all pain and sadness! There’s great hope and great celebrations and great successes in the gap between expectation and experience. Please remember that, too. Ask what the family is celebrating! Help them to see that their important things are important to you, too.

You can do a lot to help others not to feel alone when they can’t access those Christmas-bucket-list things that we all hold so dear.

And if you’re the one at home - I just love you so much. You’re doing a great job. All the things you miss or wish for are good and sweet things, and you are right to grieve them. That doesn’t mean you aren’t thankful. That doesn’t mean you don’t see the beauty. Hold it in balance - the grief and the gratitude for the sweetness of the moments you do get. The beautiful victories, so hard won, that lead to the biggest and best celebrations that no one else would understand. All the moments you miss here - may they catch up to you in the other places. You’re treading a beautiful and difficult path. It’s intense in both its difficulty and its beauty.

You are not alone.