Christmas 2021

Written in January, but published retroactively!

Christmas 2021 looked a lot different than Christmas 2020 when Thomas was in the hospital for 132 days, but also looked different than years prior to that--everything is now cast as Before or After Thomas Got Cancer--and different than the perfect hostess-with-the-mostess Christmas I'd hoped to put on.

We decorate the tree each year on Christmas Eve day, and then I put out stockings and gifts after the younger children go to sleep.

We don't have one of those gorgeous, posed photos of our family dressed in our Christmas finest because, at best, we split Masses on Christmas. Chris and the older kids attend Midnight Mass and I typically go with the littler kids early in the morning. However, this year I was wrapping up five weeks of respiratory illness, so I couldn't attend Mass anyway. I think my getting such little sleep leads to a weak immune system that just can't kick common colds the way that the rest of my family can do (or they don't even catch the bugs).

On Christmas morning, we open our stockings before pausing for breakfast . . .

. . . which were, this year, crepes made by John (15)!

Then we enjoy slowly opening gifts over the house before the Midnight Massers take naps.

In the afternoon, we visited a neighbor who was quarantining with COVID in order to serenade her with Christmas carols.

For dinner, I served a fairly simple meal of ham, fettucine Alfredo, green beans with almonds, cranberry sauce, and rolls.

Dear lovely friends had delivered us a gorgeous birthday cake for Jesus.

My heart felt tumultuous and mixed during this Christmas season: all the positive and challenging feelings were swirling about! I had wanted this Christmas to be the best Christmas of all Christmases: The most perfect! The most magical! The best gifts! The most social events! And for the first time ever, I hoped I would have purchased us coordinating Christmas outfits!

And yet, I couldn't make that happen. There is not enough of me. First, I was sick for a long time and part of that is a reflection of my being stretched so thin and getting so little sleep.

Second, I realized only in retrospect that this is my first Christmas as a mother of a disabled child, with all the extra care and coordination that requires. As an aside, apparently the adult disabled community rankles at the term "special needs child" or "special needs parent" (meaning, parent of a child with disability). Their argument, which seems valid to me, is that none of these human beings have SPECIAL needs. Their needs are normal and a defined part of the human condition, but must be met in creative ways. For example, Thomas needs to eat, just like all human beings need to eat, but the way he needs to eat requires a tremendous amount of effort, frequency, and medicine, and the consequences of his not eating "right" are serious. So, the disabled community seems generally to prefer being acknowledged as disabled: having a lack of ability in whatever area, which is an honest assessment. Also, they fought so hard for decades to achieve legal protection for the disabled, so the term has honor and meaning, whereas there is no legal protection for those with "special needs."

All that said, it's really hard to drop saying the popular phrase, "I'm a special needs mom," and to say the much more emotionally challenging, "I'm a parent of a disabled child." Heavy. Permanent. Serious.

So, this was my first Christmas with all the extra work, care, and fatigue of caring for a disabled child and it turns out that I really cannot do it all, including putting on the Bestest Christmas Ever. Not only am I stretched thin every day, but the week of Christmas, I took Thomas to the hospital three times for his 12-month cancer scans, so those were days I could not be preparing Christmas. I was late decorating; I couldn't make the fanciest meals; we lived on leftovers and frozen food most of the week around Christmas; I didn't bake like I wanted, then made cookies that tasted bad, and then never even got around to icing them; we never made gifts for neighbors; I couldn't decorate my house beyond the tree; and I was consistently late ordering gifts.

But Jesus was still born, God incarnated, 2022 years ago, regardless of any of my limitations today. Masses were celebrated around the world. Glory was given to God. Our family was united together.

This all gave me much meditation about what is important about Christmas. Unlike some voices who seem so certain and confident, I do not have conclusions or inspirational messages about what I've learned: I'm just sharing the process.