It is football season in Texas. Every Friday night, half the population of our tiny town crowds into the bleachers and cheers for our high school team. My husband and I are not exactly sports fans but every year we make an appearance at the homecoming game. (For my non-Texas readers, that is the biggest home game of the year and we celebrate it with a week of dressing up at school, giant bonfires, parades and monstrous mums.) This year, with Alyssa in 2nd grade, I decided it was time for her to have her first mum.
Lots of moms make their daughter’s mums but I was running short on time and creativity. I went to the little shop off the square in our hometown to order Alyssa’s piece. I spoke with the shop owner about color and her preference for anything that sparkles. I guestimated the size we needed (and accidentally went much bigger than intended.) As we were finishing up, I noticed several colored ribbons and asked the designer if she could add a purple one for epilepsy awareness.
When designing a mum, the goal is to show school spirit and individuality. Most kids use school colors or add the high school mascot. Then trinkets and ribbons are added to personalize it. Some kids add ballet slippers or pompoms. Others add musical instruments or sports equipment. Alyssa hasn’t been able to do any extracurricular activities but we added a crown for her love of princes and every sparkly thing they had.
When I saw a few solid pink mums for breast cancer awareness, I briefly considered ordering Alyssa one filled with purple ribbons. I quickly rejected that though because I don’t want Alyssa to grow up believing that epilepsy is the defining factor in her life. Her diagnosis is a part of her; it is literally in her DNA. That doesn’t mean it has to be all of her though.
Alyssa is a rough and tumble princess. She loves playing with her dog and wearing makeup. She is fiery and stubborn but also sweet. She needs extra help and she struggles in many ways. She doesn’t need an entire mum of purple because her diagnosis is only one aspect of my daughter.
November is Epilepsy Awareness Month and this is also a busy time of year with doctor’s appointments. It can be easy to get so busy dealing with PCDH19 that I miss the little girl behind the disorder. I have to remind myself she is so much more than those labels. One purple ribbon is plenty for her.
Note: I know other families who might have chosen an entire mum worth of purple and I certainly don’t judge them for that. We all make meaning in our own ways.