• bridget snell

Dandelion crowns over capes anyway

Updated: Aug 13

Mother’s day is my second favorite day devoted to my best accomplishment in life. My first fave day--my countdown each year--is when Matt sends me away for 3 days and 2 nights.


Alone.


I don’t speak, I don’t really move around. I just read a lot and sit and do nothing. With wine. This has become a celebration of my work as a Mom. It sometimes acts as my annual goal setting . It’s always a reward for not calling in sick for the 362 previous days. 


But I do revel in the 10th of May. 


I enjoy beautifully-written poems and oversized cards. I tuck these away (and other scribbled love notes I find around the house) inside a styrofoam robot they made me 4 years ago for Mother's Day. The robot was intended to assist me in household chores, but now holds love notes from them. It's my treasure robot.


This day in our house is much like many other celebrations and holidays. It’s all about the morning. This is the chosen time to make loud, celebratory noises, search for already-rotting eggs, eat cake, throw candy wrappers on the floor, or throw your sister across the room to get to the chocolate. Then be done with it. All by 8:45 a.m. and can I play on my tablet now?


Okay, actually, total honesty: My girls like to sleep in until about 9:30/10:00. I know you hate me, I feel it. This year, though, it approached noon before we were done eating doughnuts.


I was thinking about this day throughout the years, and thought I should get an opinion on my work performance pre-HSCT vs post-HSCT. I asked my youngest, first, what she thought of my skills since I finished treatment 2 years-ish ago.

“You definitely have been doing more yardwork. Definitely doing more. Like, that’s really…your brain, I feel like it’s been working a lot more, because you’ve… do you get what I’m saying?” The exasperation is growing as she tries to answer my question while also navigating her device she picked up and began playing.


“Are you trying to say before treatment my brain wasn’t working as well?”


“Like, you were very tired always.”


“OK, but was I more snuggly, less snuggly or as snuggly?”


“Yes.” 


She is playing some sort of online game that lets one create new cities and hatch or magically build creatures. So, you know, I can’t figure out if she’s answering me or expressing satisfaction with her virtual spawn. 


She elaborates. “You weren’t as active, so fun was playing something calm."


“You’ve never been calm,” I countered. 


“Not, like, calm calm. But before treatment you didn’t do the same stuff. Now we’re doing more active stuff with you. Usually daddy was the more active one and you were the one saying ‘calm down’.” 


“Really?”


“Sometimes.” She’s done talking now. The humming has begun. And her sister found her in their made up world. They’re playing together now. Outside in their fake world (but they're playing together). 


In my heart, I’m happy because she says I’m more active and that’s something not measured in my neuro’s office or on a disability scale. That counts. Ask a doctor. This is goals.


On the other hand, this was big news about pre-treatment days. I had imagined myself a power-through-er. This fantasy apparently wasn’t shared. The MS Mom who used the power of numbness to make it through another snowball fight. Who used her super confusion to create a learning moment for her kids (“No, you tell ME how many more miles Kevin ran than Sally”). That MS Mom who danced on pins and needles in the kitchen to Kidz Bop while preparing dinner. She wasn’t real. Turns out, it wasn’t a cape flowing behind her, it was just me standing in front of clothes line on a windy day in just the right spot.


Oh well. I'll grab a device and join them "outside."

Note: This is my personal story with information about my own experience with HSCT for MS. 

The information on this site is not intended to replace advice from your doctors. I do not give medical advice.