When Holiday Excitement Gets To Be Too Much
By: Amy Daniels
Tags: Chronic Illness, Special Needs, Family, Holidays, Parenting

The season feels longer and longer with each passing year

Emily, thoroughly enjoying a Christmas gift

I grew up in New England with a tradition of putting up a real tree for Christmas a few weeks into December. Then, for two weeks I eagerly awaited Santa’s arrival on Christmas morning. The first half of my “adulting years” was spent in Colorado where my husband worried the arid environment wasn’t conducive to a live tree. Instead, we got a fake tree that we put up the first week in December, signaling three weeks until the big day. Then we moved to the south where it seemed more and more people were putting up their Christmas trees the week of Thanksgiving.

I don’t know if it was a geographic phenomenon or a sign of the times, but the start of the holiday season was beginning earlier and earlier.

And it was a nightmare for me and my husband.

We didn’t feel as heavily the typical holiday stress other parents seemed to feel. Sure, I panicked when my son sat on Santa’s lap just a few days before Christmas and asked for a toy that wasn’t on his list. I wondered how we were going to pay for it all. I felt the exhaustion that comes with trying to get everything done. But in addition to those regular stressors, we had something that was bigger and more potent. It stemmed from my beautiful daughter, a perpetual child that kept the spirit and magic of the holiday alive in our house for decades.

The anticipation of the holidays was almost too much to bear for Emily. She was dazzled by the lights, family get-togethers and traditions, chocolates, cookies, and, of course, the thought of Santa delivering a sack of presents under our tree on Christmas morning.

She wrote meticulous lists for Santa after scrutinizing the toy catalogue that came in the mail every winter. Yet, the lists rarely changed from year to year:

· Markers

· Paint

· Baby Doll

· Whatever was advertised on the As Seen on TV ads that season.

Emily had a brain tumor and the effects of the treatment she received throughout the years resulted in a cognitive delay and memory impairment, along with a diagnosis of epilepsy. She was happily trucking along at the age of 7 years, even though she was technically an adult.

And the thought of a special occasion put her excitement level at high. Which put my alert level on high.

Changes in routine, sleep, and excitability seemed to result in more frequent seizures for Em. This, coupled with her daily, incessant questions of How many days? and Do you think I’ve been good? would result in even more disruption of routine, sleep, and excitability. It also resulted in my patience running thin listening to endless questions, and stress level increasing, worried about her health. It was a vicious cycle.

We loved to see Emily excited. We hated to witness her having a seizure and then endure the after effects of that seizure. We hated to hear the countless questions of when Christmas was — Em unable to remember due to her memory impairment. We faced this conundrum every year. Do we downplay the holiday? But it brings her so much joy. What about our younger son? Shouldn’t we do all we can to encourage him to be a part of the magic of the season?

We decided on waiting until December to put the tree up. We ignored the neighbor’s lights which were up before then by not drawing any attention to them. The first talk of “Christmas” in our house was on December 1st when the kids dove into their Advent calendar filled with chocolates. It seemed to be as late as we could wait considering all the commercials on TV and holiday music playing in the background no matter where we went.

Once the Christmas tree lights were on that first night, the excitement officially began. We would field her multiple times a day question of how many days until… ? as patiently as we could, and sometimes that wasn’t so patiently. Every night in December leading up to Christmas her nightly tuck in included a simple statement of Christmas is not tomorrow. Meaning, tonight is not the night to go to sleep with visions of sugar plums dancing in your head (you will be sorely disappointed with the sight under the tree tomorrow morning if you do).

We continued doing all the seasonal things to be done — baking cookies, delivering goodies to friends and neighbors, shopping, wrapping presents, and visiting with family. And each event included multiple talks about Christmas Day not being the next day as well as a seizure endured by Emily.

We downplayed it as much as we could while also reveling in her excited, good mood. She, of all people, deserved the happiness she was experiencing.

Finally, Christmas would arrive, and she would patiently sit on the couch starting at 5am staring at the abundance of gifts Santa magically delivered in the night, waiting for the rest of us to show up. Her stocking would be laid out on the couch beside her and candy wrappers would litter the end table. As soon as I appeared in the family room, she would announce with a chocolate rimmed smile, “Santa came!”

The rest of the family would come into the room at a somewhat more respectable hour and we would spend the morning opening gifts, drinking coffee, and laughing. Emily would have a seizure or two, nod off, then continue with the playing of new gifts.

By Christmas afternoon she would gleefully announce, “Christmas is over. It’s almost my birthday!”

Here we go again, the countdown to her birthday which was one month after Christmas.